Hidden Recovery Environment Blog

2012-01-04T13:28:00.005-05:00

Excited to share here that an ebook version of my book is available on Amazon. Printed versions are only available through my website. Happy to start the new year this way!

Happy New Year!

In health and hope,

Ashley

Dr. Marra, Our Lyme Doc

2011-11-08T00:09:00.002-05:00

Dr. Marra has made it possible for both my kids to live normal lives. As I am typing this, my daughter is practicing her dance team choreography. She dances 7 hours a week, and is preparing for a competition. Just a couple years ago, she could not walk longer than one block without triggering a Lyme flare. For her, that meant sudden shin, sole, stomach, and head pain so bad, it stopped her in her tracks. She had to relearn how to ride a bike, run, and do typical gym activities.

Dr. Marra chose to take on her very complex case. Before Dr. Marra, my daughter was home for 2nd grade because she had 26 chronic pain areas, and we almost lost her to a flare-induced seizure when she was 7. It was New Years Eve, and we were in a hotel surrounded by noise makers and drunk people. I have been to hell, and it’s called Lyme, but we are back. The doc that mentored Dr. Marra for years saved her life, and we are forever grateful we have her in our lives to finish the job.

When my son began showing signs of Lyme disease, she put him on a protocol that, a year and a half later, has just one residual symptom of minor facial tics. Dr. Marra prevented the big decline that we didn’t know how to stop with our daughter.

What is it like to see Dr. Marra? First, she interviews me, the mom. It is an intensive interview, which I appreciate. Next, she interviews my child. After that, Dr. Marra performs a thorough Lyme exam, EVERY visit. I am not kidding! I have had docs that never even turn around to look at my daughter sitting on the exam table, and not even look up from note taking. That had left the burden of discovery on me, and I am not a doctor!

Every visit is different, and every visit I learn something new. I appreciate the frequent visits, as I know I am shortening our Lyme time by the personal monitoring we are getting from Dr. Marra. She is available in emergencies and even quick questions. I walk out being thankful I have scrounged up the money to pay for this expensive disease(s). I may be sweating as I write out that fat check, but I am thankful for the bag of gold (supplements/test resulfs) and knowledge I walk out with. I know I am one step closer to a full recovery.

I have never had more personal care from ANY doctor in my life. Amazingly, she KNOWS my kids! I don’t have to reiterate and do a life history each visit. She picks up where we left off, takes their cases, and tinkers sometimes in a minor way, or major way with their protocol. That is the nature of Lyme. These dynamic changes are the reason my kids are doing so well. She sees the big picture, and also the most minute detail, and factors that in to my bi-monthly master plan. Both my kids open up to her and tell her things that I cannot get out of them. They adore her, and find her office to be a very special sanctuary.

Better yet, I appreciate the fact I am not getting a boiler plate protocol. I have two sick kids, and their protocols continue to be extremely different (other than core nutritionals). They do have intensity and variety in common.

Dr. Marra is one of the brightest people I have ever met. Scary bright. She embraces her calling with enthusiasm and no B.S. I am sure there are plenty of other ways she could be using that science brain of hers. But, she has chosen one of the hardest specialties there are, a political/orphan disease with no cure. I mean hello, I would run as fast as I could and hide under a rock. She has chosen to help us, when western medicine has turned away from us.

I can see how some people can be turned off by her direct approach. She tells it like it is, and knows her stuff, which I prefer. I don’t care for the hand-holding/babysitting style, but hey that is me. I am busy dealing with 3 people with Chronic Lyme, I drive from 3 hours away, so I am in no mood for dancing around.

I know it’s not for everyone to be accountable for their wellness, and just wants a doc to take over and fix it. For those that get better, I have observed the following characteristic: It’s a team effort by everyone involved. Patient, doctor, family/community. After all, there is no cure for this disease.

And speaking of teaching, from what I have observed, she attends or speaks at all of the major seminars - Lyme, and other health related conferences.

She is extremely well connected because of her east coast roots. Given the type of disease this is, it is more important than ever to tap in to your doc community, just as it is for us parents to turn to other parents for support and advice.

I found Dr. Marra through word-of-mouth back in CT, ground zero for Chronic Lyme Disease. Two years ago, my family and I were fleeing the war zone for a safer life for my children. I knew that moving to the NW was possible - an east coast doc with a “pedigree” that no other doc could match.

My daughter had done very well with the cutting edge docs that are at the forefront of research and treatment guidelines back in the trenches. The top dogs. These guys trained Dr. Marra. She was mentored by them, and watched them work. I felt like I had won the lottery having access to the caliber of these east coast docs, but right here in the NW.

We look forward to walking the walk with Dr. Marra's guidance for as long as it takes.

Autism's Puzzle: Decoding An Epidemic

2011-09-23T10:37:00.003-05:00

A great article summarizing the latest thinking into the environmental causes of autism. I was lucky enough to be interviewed by Pam. She is an amazing person. She has saved her entire family from Lyme disease and their co-infections. She is a brilliant researcher and author. Her book, Cure Unknown, saved my daughter from Chronic Lyme Disease. It had all the information I needed to understand the disease, the politics, and where to look for help.

The magazine, Experience Life, is a really good one. I highly recommend taking a look.

Autism's Puzzle; Decoding an Epidemic, by Pamela Weintraub.

Autoimmunity: autism, pandas, vaccines

2011-09-14T14:40:00.003-05:00

Here is another fantastic article from the Age Of Autism.

Between my two children, we have dealt with food allergies, environmental allergies, asthma, pandas, chronic lyme disease and co-infections, and let's not forget - autism. And here I sit as one of the "lucky" ones. A parent that has had some success with treatments. For the majority out there, not the case.

So depressing, but had to post!

HFA: Advice From A Mom, From Diagnosis To Recovery Book

2011-05-21T22:57:00.044-05:00

The book price is $15. Shipping and handling is $5 inside the U.S.A. Order online with PayPal or Google Checkout. For checks sent by mail, email me at Busterfoofoo@gmail.com for address. For international orders, email me at Busterfoofoo@gmail.com for your country's shipping and payment link. Thanks!

Front and Back Cover

My New Book Coming Soon

2011-05-08T13:46:00.005-05:00

Hi everyone. I am beyond excited that I am close to finishing my book. It's been a journey. I started collecting answers to questions that parents have asked me over the years. I've worked on it now and then. When my daughter got sick I stopped everything. But, now that she is out of the woods I picked it up again and am almost done.

My hope is that our experience will helps others. Here is a peak at the Table Of Contents for your review. Feel free to tell me what you think. I will let you know when it's ready for purchase!

Ashley

Telling Leo About his Autism Label

2011-03-30T12:52:00.002-05:00

I have gone over in my mind a thousand times what I would say. What came out of my mouth was pretty close to that. It went really well! But first, here's the backstory.

My husband and I made the decision to wait until Leo asked if their was a name for his issues, or if it seemed he needed to know for some reason. I anticipated the topic would come up when he noticed a classmate with Down Syndrome looked like his cousin. Leo could relate to all the therapies and issues his cousin had. His cousin’s issues had a name, did his as well? But, he didn’t ask.

We wanted Leo to be in a good place and to be able to handle any reservations he may have once he learned of the label. He knew all about discrimination, comparing it to racial issues. He also witnessed classmates making fun of children with special needs. “Andrea only wants to play baby games. It’s so annoying!” they said one day. He associated himself with those children, but instinct told him to not share that he once had the same issues too.

In my mind, I wanted him to know by middle or high school. We didn’t anticipate any reservations -- he doesn’t read the media or hear discriminatory remarks using the word autism -- yet. Knowing beforehand and building upon that seemed ideal.

He has always been comfortable with the fact that he grew up as a “Help Needed” child, the term they used in elementary school. He remembers most of his therapists and some of his “special” interests and behaviors, like stimming on wheels and buses.

Like a child that is adopted, we knew this conversation would take place many times over the years, in layers that were age appropriate.

So here is what happened! The kids and I were invited to speak at a Lyme seminar. Leo was very excited about this -- he loves to talk in front of people. I thought about it, and realized that we couldn’t do it because our privacy would be at risk. The seminar was nearby. Not everyone is thrilled with the content of my blogs, which is one of the reasons why I have used an alias. So, I realized I needed to tell him why.

On our way pick up a few things at a convenience store. I park, and we sit and talk in the parking lot in front of the building.

Mom: “So Leo, I decided that we can’t do that Lyme seminar.”

Leo: “Why not?”

Mom: “Well, I realized that there is one thing you don’t know about yourself. Something about when you had all those problems as a little guy.”

Leo:”Okay, what?”

Mom: “Well, all of your problems actually have a name. You had an Autism Spectrum Disorder. It’s a category of behaviors, learning and health problems.” There are many different kinds, and you had the one called Pervasive Developmental Disorder (PDD). It is a mild version.

Leo: “So like how my Lyme is milder and different than Sydney’s?”

Mom: “Right. Your friends like Joey have Autism, and some of your other friends like Nate have the same kind like you, PDD.

Because of all your hard work, you were able to get better and not have it anymore. You are still the same person, just wired differently. Some things remain easier and harder for you. For example, drawing and visual/spacial stuff is challenging for you even though you have tested average for those. Sometimes it takes you a little longer to notice inferences. You have always known that about yourself, right? You remember your Helper at school, all the speech you had, and the Helpers that played with you at our old house?”

Leo: “Yeah, yeah. Of course I remember. But I was really smart, right?”

Mom: “Absolutely, and you still are. Your brain is unique and because of that you have incredible skills, like your memory and how good you are at math. That is why Yale asked you back, so they could learn from you. You are like a rock star to them. That’s what they do, they study these Autism Spectrum Disorders since it’s now an epidemic. Very few kids recover like you have.

Leo:”Wow. So cool!”

Mom: “So, because people discriminate, we only share the name with certain people we can trust.

Leo:”Like Harrison (our neighbor) doesn’t tell everyone about his ADHD and Dyslexia?”

Mom:”Right. For the same reasons. Autism is even harder to understand, so people have a bad stereotype of it in their minds. I’ve studied it over the years, so I have become an expert in a way. I help people on my website, and as you know I am writing a book about what happened with you. People have been inspired by your recovery and have learned from our experience.”

Leo: “So, the book is ONLY about me, and not Sydney? Awesome! So, am I like, famous?”

Mom: “Kind of, I guess. In a way, to a group of moms with kids that have an autism spectrum disorder. Don’t use the book against your sister, okay? She is in the book a little bit. I have learned a lot from her too. We both have.”

Leo:”Look! A cheese special (he points at a sign on the window for a sale).”

Mom:”Cool. So do you have any questions?”

Leo:”Mom, it’s just a word.”

Rage and Chronic Infections

2011-02-22T12:50:00.003-05:00

I can't help but think that this little boy I saw on Oprah has multiple chronic infections. His red ears and tics furthered my interest.

Rage and violence is commonly seen as a symptom of Lyme Disease and the co-infections, particularly Bartonella. Many undiagnosed people end up in mental institutions. Some end up on antibiotics that kill the infection, and the symptoms disappear. Any Google search will provide more info for those interested.

My heart goes out to this family and this little boy. He is amazing and tries so hard to just get through the interview. I can't imagine what a day is like for him. My hope is the family has looked into treating chronic infections as a way to return their little boy to them.

Oprah Interview

I recommend a Lyme-literate medical doctor for screening since the current testing available is tenuous. Lyme doctors address the big picture - strep, viruses, not just the Lyme bacteria and co-infections.

Getting Shingles More Than Once

2011-02-22T12:20:00.003-05:00

This kind of article should make me happy. All it does is remind me how far behind the medical community is in understanding chronic illness, and the cause and effect of modern living to the immune system. And most frustrating, how doctors do not believe their patients.

Or parents when they say vaccines triggered autism.

HEALTH JOURNAL
FEBRUARY 22, 2011

Painful Shingles Can Strike More Than Once

By MELINDA BECK

Having shingles can be a miserable experience. Now, to make matters worse, the long-held notion that people can only get shingles once in their lives appears to be false, according to a study in the journal Mayo Clinic Proceedings this month.

It's estimated that 1 in 3 Americans will get shingles at some point, with one million new cases reported a year in the U.S. It typically starts with itching, tingling or numbness, then develops into a painful rash that blisters. It often hits people who are elderly or already suffering from another illness or trauma, and the residual nerve pain can last for months.

The incidence rate has been rising around the world, in all age groups, though it isn't clear why, says Rafael Harpaz, a medical epidemiologist in the Centers for Disease Control and Prevention's division of viral diseases. More than half of cases occur in people over age 60, when the risk of complications also rises steeply. Women are slightly more likely to contract shingles than men.

View Full Image

Science Photo Library/Custom Medical Stock Photo

Shingles rash

Shingles 101

1 in 3 Americans will have it in their lifetimes.

There are one million new cases a year.

It only strikes people who have had chicken pox

Risks and complications rise with age.

Symptoms include blistery rash, nerve pain.

Can cause vision and hearing damage.

Vaccine cuts risk by about half.

Source: CDC

The CDC has urged all Americans age 60 and older to get the shingles vaccine—whether they've had shingles or not. But supplies of the vaccine are on back order in some areas. Merck & Co., the only company that makes it, has encountered frequent supply problems since the vaccine was approved in 2006.

Shingles is caused by the Varicella zoster virus, or VZV, the same virus that causes chicken pox, and it only strikes people who have had chicken pox in the past. Like other herpes viruses, VZV never fully leaves peoples' bodies. It can lie dormant for decades in the nerve roots in the spinal column, until it suddenly replicates and travels down the nerves to cause shingles. This frequently creates a striped rash that follows the pattern of nerves on the back or chest.

Exactly what prompts the virus to wake up is unknown, but it seems to occur when the immune system, which has kept it in check for years, becomes weakened due to age, illness or treatments such as chemotherapy. Emotional stress can cause recurrences of other herpes viruses, and the CDC is investigating whether it can spark shingles as well.

For the new study on shingles recurrence, researchers at the Olmsted Medical Center in Rochester, Minn., examined medical records of nearly 1,700 patients who had a documented case of shingles between 1996 and 2001. They found that more than 5% of them were treated for a second episode within an average of eight years—about the same rate as would typically experience a first case.

That a recurrence is so common is more of a surprise to virologists and other scientists than primary-care physicians, who have seen it in their practices, says Barbara Yawn, director of research at the Olmsted center and the study's lead author. "I've gotten calls and emails from some saying, 'Thank you. Now they will believe us.'"

The Olmsted researchers found the people most likely to have a recurrence were patients whose pain had lasted more than 30 days with their first shingles episode.

It's possible that some subgroups of the virus are more prone to recurrence, says Dr. Yawn. In their next study, her team is monitoring new episodes of shingles and the CDC will analyze samples of those that recur to look for genetic patterns. The earlier studies were funded in part by Merck and the National Institutes of Health, while the new study is funded by the CDC.

Some shingles cases are mild, causing only a minor rash. But some patients develop sharp, stabbing nerve pain that can make the affected area extremely sensitive. "Sometimes people say they can't stand to have anything touch the rash area, even clothes," Dr. Yawn says.

In some cases, the nerve pain is the only symptom for days. Patients have been hospitalized with what was thought to be heart disease or appendicitis until the telltale shingles rash appeared. "Sometimes the rash never develops—that really confuses doctors," says the CDC's Dr. Harpaz.

Nerve pain that lingers for more than a month is called postherpetic neuralgia, or PHN, and it can last for years in some patients. While antiviral medications can shorten the duration and severity of shingles episodes, PHN is harder to treat. Some patients get limited relief from opiates, antiseizure medications and antidepressants, but many elderly people can't tolerate the side effects.

In rare cases, shingles has other serious consequences. Blisters can become infected. A rash on the face can spread shingles into eyes, which can lead to loss of vision, sometimes permanent. A rash around the ear can cause a complication known as Ramsey Hunt syndrome, which can include deafness and weakness of the facial muscles.

A big unknown is whether people who got the chicken-pox vaccine as children will be susceptible to shingles in later years or protected from it—or even vulnerable to full-blown chicken pox if their immunity has weakened. Since the chicken-pox vaccine was only approved in 1996, it will be several decades before the first generation of Americans to be widely vaccinated reaches the typical shingles years.

"It's quite plausible that rates will come down dramatically as those kids become older adults," says Dr. Harpaz, though he notes that some people who got the chicken-pox vaccine may unknowingly harbor the actual virus because the vaccine doesn't prevent 100% of cases, and some people may have had a mild, unnoticeable case before they were vaccinated.

The shingles vaccine, known as Zostavax, doesn't eliminate all cases. Studies show that it cuts the risk of shingles by about half in people over age 60. The cases that do occur in vaccinated people tend to be milder.

If it's possible to get shingles more than once, why does a vaccine work at all? Eddy Bresnitz, Merck's medical director for adult vaccines, says that unlike most vaccines, which prime a person's immune system to ward off a virus the first time it invades, Zostavax boosts the immune system's ability to keep the preexisting herpes infection in check, even though it never fully disappears.

To date, less than 11% of Americans over age 60 have had the shingles vaccine, partly because the shortages have frustrated public-awareness efforts and partly because of cost. Zostavax, which ranges from $140 to $400, is one of the most expensive of adult vaccines, and only some Medicare Part D plans cover it.

Dr. Bresnitz says Merck is building a new plant in North Carolina and expects to have more Zostavax available in coming years. It uses the same raw materials as the chicken-pox vaccine for children, to which Merck gives first priority. People can check for local availability of the vaccine at www.Zostavax.com. Side effects are usually limited to mild irritation and tenderness around the injection site.

Public-health experts urge Americans over 60 not to wait until they are very old or ailing to get the vaccine. Once people have compromised immune systems, they are no longer eligible, due to the risk that the vaccine could cause shingles rather than prevent it.

9 Questions for Pro-Vaccine Advocates and Their Claims

2011-01-31T12:12:00.000-05:00

This article has been around for a while, think it's a good reminder of the hard decisions we make. Click here for the source of article from PreventDisease.com:

Since the flu pandemic was declared, there have been several so-called "vaccine experts" coming out of the wood work attempting to justify the effectiveness of vaccines. All of them parrot the same ridiculous historical and pseudoscientific perspectives of vaccinations which are easily squelched with the following 9 questions.

Claim: The study of vaccines, their historical record of achievements, effectiveness, safety and mechanism in humans are well understood and proven in scientific and medical circles.

Fact: The claim is completely false.

1. What to ask: Could you please provide one double-blind, placebo-controlled study that can prove the safety and effectiveness of vaccines?

2. What to ask: Could you please provide scientific evidence on ANY study which can confirm the long-term safety and effectiveness of vaccines?

3. What to ask: Could you please provide scientific evidence which can prove that disease reduction in any part of the world, at any point in history was attributable to inoculation of populations?

4. What to ask: Could you please explain how the safety and mechanism of vaccines in the human body are scientifically proven if their pharmacokinetics (the study of bodily absorption, distribution, metabolism and excretion of ingredients) are never examined
or analyzed in any vaccine study?

One of the most critical elements which defines the toxicity potential of any vaccine are its pharmacokinetic properties. Drug companies and health agencies refuse to consider the study, analysis or evaluation of the pharmacokinetic properties of any vaccine.

There is not one double-blind, placebo-controlled study in the history of vaccine development that has ever proven their safety, effectiveness or achievements (unless those achievements have underlined their damage to human health).

There are also no controlled studies completed in any country which have objectively proven that vaccines have had any direct or consequential effect on the reduction of any type of disease in any
part of the world.

Every single study that has ever attempted to validate the safety and effectiveness of vaccines has conclusively established carcinogenic, mutagenic, neurotoxic or fertility impairments, but they won't address those.

******************************************************************************

Claim: Preservatives and chemical additives used in the manufacture of vaccines are safe and no studies have been linked or proven them unsafe for use in humans.

Fact: The claim is completely false.

5. What to ask: Could you please provide scientific justification as to how injecting a human being with a confirmed neurotoxin is beneficial to human health and prevents disease?

6. What to ask: Can you provide a risk/benefit profile on how the benefits of injecting a known neurotoxin exceeds its risks to human health for the intended goal of preventing disease?

This issue is no longer even open to debate. It is a scientifically established fact in literally hundreds of studies that the preservatives and chemical additives in vaccines damage cells. Neurotoxicity, immune suppression, immune-mediated chronic inflammation and carcinogenic proliferation are just a few of several effects that have been observed on the human body. See a list of chemicals in vaccines

Fortunately, the drug companies still tell us the damage vaccines have on the human body. People just don't read them. All you have to do is look at the insert for any vaccine, and it will detail the exactingredients, alerts and potentially lethal effects.

See my latest analysis of the Arepanrix H1N1 vaccine for an example.

Any medical professional who believes that it is justified to inject any type of neurotoxin into any person to prevent any disease is completely misguided, misinformed, deluded and ignorant of any logic regarding human health.

******************************************************************************

Claim: Once an individual is injected with the foreign antigen in the vaccine, that individual becomes immune to future infections.

Fact: The claim is completely false.

7. What to ask: Could you please provide scientific justification on how bypassing the respiratory tract (or mucous membrane) is advantageous and how directly injecting viruses into the bloodstream enhances immune functioning and prevents future infections?

8. What to ask: Could you please provide scientific justification on how a vaccine would prevent viruses from mutating?

9. What to ask: Could you please provide scientific justification as to how a vaccination can target a virus in an infected individual who does not have the exact viral configuration or strain the vaccine was developed for?

All promoters of vaccination fail to realize that the respiratory tract of humans (actually all mammals) contains antibodies which initiates natural immune responses within the respiratory tract mucosa. Bypassing this mucosal aspect of the immune system by directly injecting viruses into the bloodstream leads to a corruption in the immune system itself. As a result, the pathogenic viruses or bacteria cannot be eliminated by the immune system and remain in the body, where they will further grow and/or mutate as the individual is exposed to ever more antigens and toxins in the environment which continue to assault the immune system.

Despite the injection of any type of vaccine, viruses continue circulating through the body, mutating and transforming into other organisms. The ability of a vaccine manufacturer to target the exact viral strain without knowing its mutagenic properties is equivalent to shooting a gun at a fixed target that has already been moved from its location. You would be shooting at what was, not what is!

Flu viruses, may mutate, change or adapt several times over a period of one flu season, making the seasonal influenza vaccine 100% redundant and ineffective every single flu season. Ironically, the natural immune defenses of the human body can target these changes but the vaccines cannot.

I have never encountered one pro-vaccine advocate, whether medically or scientifically qualified, who could answer even 1 let alone all 9 of these questions. One or all of the following will happen when debating any of the above questions:

- They will concede defeat and admit they are stumped

- They will attempt to discredit unrelated issues that do not pertain to the question.

- They will formulate their response and rebuttal based on historical arguments and scientific studies which have been disproved over and over again.

Not one pro-vaccine advocate will ever directly address these questions in an open mainstream venue.

Flu Vaccine Exposed: Think Twice!

Dave Mihalovic is a Naturopathic Doctor who specializes in vaccine research, cancer prevention and a natural approach to treatment.

* A full list of h1n1 vaccine ingredients, alerts and warnings.

Reference Sources: http://preventdisease.com/news/09/062909_wmds.shtml
October 28, 2009

My Favorite Snack Mix

2011-01-13T12:20:00.002-05:00

Had to share what has been working for MONTHS now. I have put together a great snack for school that both my kids have not gotten tired of! So I figured I should share since us moms need all the ideas we can get. It covers all the food groups to maximize nutrition and also regulate blood sugar. Here goes:

2 handfuls of GF pretzels (carb)

1 tablespoon Eden organic shelled pistacios (protein)

1 tablespoon of GFCF mini-chocolate chips (antioxidant but also good for motivation to eat)

1 small carrot (fiber, something alive)

So there you go! I also use shelled sunflower seeds for nut-free classrooms, and use different veggies like celery, a few sprigs of parsley or cilantro (can't beat how lovely the fragrance is). I also do the Trader Joes rice crackers instead of pretzels.

Here's to not the same 'ole! Ashley

Finally! Government Looking Into Fluoride

2011-01-07T11:55:00.001-05:00

AP EXCLUSIVE: US says too much fluoride in water

By MIKE STOBBE, AP Medical Writer57 mins ago

ATLANTA – Fluoride in drinking water — credited with dramatically cutting cavities and tooth decay — may now be too much of a good thing. Getting too much of it causes spots on some kids' teeth.

A reported increase in the spotting problem is one reason the federal government will announce Friday it plans to lower the recommended levels for fluoride in water supplies — the first such change in nearly 50 years.

About 2 out of 5 adolescents have tooth streaking or spottiness because of too much fluoride, a surprising government study found recently. In some extreme cases, teeth can even be pitted by the mineral — though many cases are so mild only dentists notice it.

Health officials note that most communities have fluoride in their water supplies, and toothpaste has it too. Some kids are even given fluoride supplements.

The U.S. Department of Health and Human Services is announcing a proposal to change the recommended fluoride level to 0.7 milligrams per liter of water. And the Environmental Protection Agency will review whether the maximum cutoff of 4 milligrams per liter is too high.

The standard since 1962 has been a range of 0.7 to 1.2 milligrams per liter.

The Centers for Disease Control and Prevention reports that the splotchy tooth condition, fluorosis, is unexpectedly common in kids ages 12 through 15. And it appears to have grown much more common since the 1980s.

"One of the things that we're most concerned about is exactly that," said an administration official who was not authorized to speak publicly before the release of the report. The official described the government's plans in an interview with The Associated Press.

The government also is expected to release two related EPA studies which look at the ways Americans are exposed to fluoride and the potential health effects. This shift is sure to re-energize groups that still oppose it.

Fluoride is a mineral that exists naturally in water and soil. About 70 years ago, scientists discovered that people who lived where water supplies naturally had more fluoride also had fewer cavities. Some locales have naturally occurring fluoridation levels above 1.2. Today, most public drinking water supplies are fluoridated, especially in larger cities. Counting everyone, including those who live in rural areas, about 64 percent of Americans drink fluoridated water.

Maryland is the most fluoridated state, with nearly every resident on a fluoridated water system. In contrast, only about 11 percent of Hawaii residents are on fluoridated water, according to government statistics.

Fluoridation has been fought for decades by people who worried about its effects, including conspiracy theorists who feared it was a plot to make people submissive to government power.

Those battles continue.

"It's amazing that people have been so convinced that this is an OK thing to do," said Deborah Catrow, who successfully fought a ballot proposal in 2005 that would have added fluoride to drinking water in Springfield, Ohio.

Reducing fluoride would be a good start, but she hopes it will be eliminated all together from municipal water supplies.

Voters in Springfield, which is near Dayton, turned down the measure 57 to 43 percent in 2005. They also rejected the idea in the 1970s.

Catrow said it was hard standing up to city hall, the American Dental Association and the state health department. "Anybody who was anti-fluoride was considered crazy at the time," she said.

Drinking water patterns have changed over the years, so that some stark regional differences in fluoride consumption are leveling out. There was initially a range in recommended levels because people in hotter climates drank more water. But with air conditioning, Americans in the South and Southwest don't necessarily consume more water than those in colder states, said one senior administration official.

Fluorosis is considered the main downside related to fluoridation.

According to the CDC, nearly 23 percent of children ages 12-15 had fluorosis in a study done in 1986 and 1987. That rose to 41 percent in the more recent study, which covered the years 1999 through 2004.

"We're not necessarily surprised to see this slow rise in mild fluorosis," Dr. William Kohn, director of the CDC's division of oral health, said in a recent interview.

Health officials have hesitated to call it a problem, however. In most kids, it's barely noticeable; even dentists have trouble seeing it, and sometimes don't bother to tell their unknowing patients. Except in the most severe cases, health officials considered the discoloring of fluorosis to be a welcome trade-off for the protection fluoride provides against cavities.

Generally, the prevalence of tooth decay in at least one tooth among U.S. teens has declined from about 90 percent to 60 percent. Health officials call water fluoridation one of the ten greatest public health accomplishments of the last century.

"One of water fluoridation's biggest advantages is that it benefits all residents of a community — at home, work, school, or play. And fluoridation's effectiveness in preventing tooth decay is not limited to children, but extends throughout life, resulting in improved oral health," said HHS Assistant Secretary for Health Dr. Howard Koh, in a statement.

The government is not suggesting people change their brushing or other tooth-care habits.

The American Dental Association on Friday morning released a statement applauding the government announcement.

"This is a superb example of a government agency fulfilling its mission to protect and enhance the health of the American people," said ADA President Dr. Raymond F. Gist, DDS.

Indeed, many health leaders continue to be worried about cavities, particularly among poor families with kids who eat a lot of sweets but don't get much dental care. The American Public Health Association in November adopted a resolution calling for coordinated programs to be established at public health, dental and medical clinics to offer fluoride varnish — a highly concentrated lacquer painted on teeth to prevent cavities.

Secretary Kathleen Sebelius could make a final decision within a few months, the administration official said.

There is no fluoride in most European water supplies. In Britain, only about 10 percent of the population has water with fluoride in it. It's been a controversial issue there, with critics arguing people shouldn't be forced to have "medical treatment" forced on them. In recent years, the UK has tried to add fluoride to communities with the worst dental health but there's still considerable opposition.

Some European nations used to add fluoride to water supplies but have stopped. Some countries add it to salt instead.

___

Associated press writers Maria Cheng in London and John Seewer in Toledo contributed to this report.

Babycakes, My New Favorite GFCF Cookbook

2010-12-05T13:50:00.002-05:00

You will LOVE love love this cookbook, Babycakes. It contains the recipes from a fancy bakery in NYC that has star clientele. It's been out for a while, but I finally got a copy of my own. Over the years my sister-in-law has ordered from this place for us when we visit.

It is incredible how many famous people are into GFCF baked goods. Their faces are peppered throughout this book! Us moms with special kids are reaping the benefits of allergy-free foods mainstreamed.

The best part about this book is the explanation of ingredients. Each flour type is described so you know why certain ingredients are blended together, what gives what flavor, texture, consistency, all of those properties we look for. The author does a great job of giving you all of the info needed to be successful and also to play around with the recipes.

I also like the use of coconut flour and oil. I've been using coconut for years, also as a lotion for myself and my kids. Coconut is anti-microbial and has numerous other healing properties.

These days there is no excuse but to make even more delicious than "regular" treats for yourself and your precious children. Lisa Lewis will forever take credit for saving us all from insanity by giving us the gift of Special Diets for Special Kids cookbook ages ago. But now we have glitz and glamour and even better recipes to choose from!

Autism Recovery Study

2010-10-19T10:47:00.006-05:00

Recovery from Autism

By: Colin Poitras, University of Connecticut 9/13/10

Yet after five months of targeted intervention with a home-based therapist, Catherine, who had a regressive form of autism spectrum disorder, began recovering some of the communication and social skills she had lost. Fein, Board of Trustees Distinguished Professor of Psychology and Pediatrics at UConn, was intrigued.

By age three, Catherine was doing well enough to enroll in a private preschool for typically developing children where, with additional support, she continued to progress. By age five, Catherine was enrolled in a public school kindergarten with no autism diagnosis, no individualized education plan, and no ongoing specialized interventions of any kind.

Now, years later, Fein’s research into recovery from autism has brought her international attention and offered hope to thousands of parents around the globe. Catherine remains a subject in one of Fein’s ongoing studies and is one of many formerly autistic children who, Fein says, are now living typical lives with no significant impairments.

“They are doing just great. They are not having any major behavioral issues,” says Fein, whose work has been featured on NBC’sToday Show and in The New York Times and TIME magazine. “Their cognitive functioning is good. Their academics are excellent. Their reading comprehension is mostly above grade level. Their math is terrific, their memory is terrific, and their language is terrific.”

Based on her research, Fein believes that at least 10 percent, and possibly as many as 20 percent, of children who receive a diagnosis of autism or autism spectrum disorder can “recover” from it if they are provided the right kind of intensive behavioral therapy.

Fein cautions that not all children achieve the same degree of progress from the treatment, which can take years and which professionals refer to as Applied Behavior Analysis (ABA). In fact, she says, most children with autism will remain autistic despite therapists’ and parents’ best efforts. But in looking at a group of 20 “recovered” children between the ages of 9 and 18 who were once diagnosed with autism, Fein says she recognized a pattern.

“Almost all of the kids in recovery received intense behavioral intervention and they tended to be diagnosed with autism earlier, almost a year earlier,” says Fein, a certified clinical neuropsychologist and former board member of the American Academy of Clinical Neuropsychology. “A higher percent of the recovered group also received more than 20 hours a week of intense behavioral intervention compared with the comparison group of kids with autism who have not recovered.”

Fein arrived at UConn in 1976 and has since received more than $15 million in research grants from the National Institute of Mental Healthand other sources to pursue her analysis. Geraldine Dawson, chief science officer for the national advocacy group Autism Speaksand a research professor of psychiatry at the University of North Carolina at Chapel Hill, calls Fein a leader in her field.

“Dr. Fein has been a true leader in the field of autism research,” says Dawson. “She helped develop the most widely used screener for autism in toddlers. More recently, she was the first to validate that children with autism can lose their diagnosis. In both of these areas, as well as others, Dr. Fein’s work has been very influential in shaping the field.”

Fein says that the children most likely to see improvement from Applied Behavior Analysis are those with generally milder symptoms and higher IQs who are diagnosed early. She also says that those who have recovered from autism tend to have some “residual psychiatric vulnerability” that may include depression, anxiety, phobias, and tics, although the tics usually subside by late adolescence.

Currently, Fein is working with other specialists in analyzing brain scans of the individuals in her study to see whether the size, structure, and networks of the brains of the recovered children look like those of children with typical development or the brains of those with autism.

“Most professionals still think that autistic kids cannot recover,” says Fein. “But the parents, they know they had an autistic kid and now they know this kid is doing great, so that is validation. Here is a national researcher who is demonstrating that what they know to be true is true.”

Fein is a highly respected researcher who, along with former graduate student Diana Robins (now a researcher at Georgia State University), modified an early detection “checklist” for autism that has become the most widely used screening method around the world and has been published in 25 languages. Fein and her research team are currently working on revising the checklist from 23 questions to 10, to simplify the process and make it more accessible for parents.

Fein says she’s been fascinated with autism since she first worked with children with the disability in the early 1970s.

“They are just endlessly fascinating, because their behavior is both inexplicable and in some ways consistent from kid to kid,” she says. “Every year, the field gets more confusing at higher and higher levels. Thirty years ago, autism was thought not to be a genetic illness. Now it is considered one of the most heritable of all the psychiatric illnesses. Yet when you try to pin down what the genetics are, it’s as confusing as any illness. It’s a tangled mess. There’s hardly a segment of the chromosome that hasn’t been implicated, yet the findings have been inconsistent from study to study.”

In addition to her research, Fein teaches undergraduate and graduate courses in neuropsychology at UConn, and is editing a volume on the neuropsychology of autism for Oxford University Press. In 2007, she published a book on autism for teachers.

Looking back, Fein says that despite all the unknowns, there have been significant advances in the diagnosis and treatment of autism.

“Things are much better,” she says. “Many more kids are having better outcomes. Even kids who are very limited, their behavior is under better control and their parents have a much better idea of what to expect. When I used to go out 30 years ago with a kid with a physical disability or autism, people would stare. One woman followed us around crying. People are much more understanding today. Public awareness has really increased.”

Leo participated in this study via Yale Child Study Center. Cool!

Gadolinium, The Metal Dye They Use For MRIs

2010-10-10T21:48:00.005-05:00

FDA Acts to Restrict GE’s Omniscan MRI Drug, and Two Others

by Jeff Gerth ProPublica, Sep. 9, 2009 6:28 p.m.

Sept. 10: This post has been updated.

The U.S. Food and Drug Administration said today that GE Healthcare’s Omniscan and two other MRI drugs should not be used in patients with severely impaired kidneys because they risk developing a rare but potentially fatal disease.

The decision marks a turnabout for the FDA and brings U.S. labeling requirements for Omniscan and the other drugs more in line with those in Europe, where an association first surfaced between Omniscan and the disease, nephrogenic systemic fibrosis, or NSF.

It also comes as a setback to GE Healthcare, which argued against special FDA labeling for Omniscan, and which faces hundreds of lawsuits from patients who contracted NSF.

ProPublica reported last year on GE Healthcare’s efforts to defend Omniscan, and on the company’s attempt to muzzle a Danish radiologist who criticized the drug.

Magnevist, the market leader, sold by Bayer HealthCare, and Optimark, which is sold by Covidien, are also affected by the FDA’s announcement Thursday.

Covidien last year acted on its own to contraindicate use of Optimark for at-risk kidney patients. But GE and Bayer continued to assert that their drugs were no riskier than the other so-called contrast agents, which are used to make MRIs easier to read.

The FDA has approved seven such drugs for use in the United States.

GE Healthcare and Bayer issued statements Thursday emphasizing their continued concern about patient safety and pointing out that tens of millions of doses have been used as diagnostic tools without any adverse effects.

GE said it would update Omniscan’s label to reflect that the drug should not be administered to patients with severe kidney damage. Bayer said it would respond to the FDA’s action within 30 days.

The first link between contrast agents containing gadolinium, a heavy metal, and NSF, a crippling condition with potentially lethal complications, surfaced in 2006. The next year, the FDA recommended a “black box” warning for at-risk kidney patients.

The agency decided to treat all the drugs as a class, ignoring two of its own medical reviewers, who said Omniscan was associated with a disproportionately high share of NSF cases and wanted to ban its use in patients with severe kidney conditions.

Since 2007, all contrast drugs sold in the U.S. have carried the same warning on their labels. Regulators in Europe, by comparison, acted that year to contraindicate use of Omniscan, Magnevist and Optimark in patients with severe kidney disease.

Amid continuing concerns about safety last year, the FDAconvened two advisory panels in December to look at the issue again. The agency’s scientists had done further research and concluded that warning labels for the three drugs should be made sterner.

The panels recommended a ban on Optimark and Omniscan. But while some panel members also voiced concerns about Magnevist, there was a wide range of opinions about what to do and no consensus.

The FDA normally follows the recommendations of its advisory panels.

More than 110 million doses of Magnevist have been sold worldwide, according to Bayer; GE Healthcare says Omniscan, the nearest competitor, has been used more than 48 million times.

All the manufacturers deny that their drug causes NSF. Omniscan has been linked to more of the reported cases of the disease than any other drug and has been named in more lawsuits than the other drug companies.

Since the disclosure of the disease the market share of Omniscan has fallen by about one half and the percentage of a less risky drug, MultiHance, made by Bracco Diagnostics, has risen, according to FDA data presented last December.

In addition to banning the three drugs for some, the FDA urged better screening to discover at-risk patients before using any of the gadolinium-based agents, which are administered intravenously, and closer monitoring of patients for signs of NSF afterward.

NSF has not been reported in patients with healthy kidneys, the FDA said. The disease, marked by scaling, hardening and tightening of the skin, or red or dark patches, can also cause fibrosis of internal organs that may lead to death, the FDA said.

New reports of NSF have virtually disappeared thanks to heightened awareness about the condition.

Update: Covidien has issued a statement in response to the FDA's action.

I just read about this through the Lyme Induced Autism Group. This is so scary. Yet another thing to get out of our bodies. Anyone needing an MRI probably already has problems? Another thing conventional doctors know nothing about. Chelation has such a bad name these days. People suffering with all sorts of problems, all from THIS!

Our Bigtime Middle Schooler

2010-09-24T13:12:00.008-05:00

So far Leo is doing amazingly well in his first year of middle school. I recall being so miserable this age! He is relaxed and confident, and at this point really likes all of his teachers, especially his homeroom. His personality immediately matured once school started, almost as if he was trying on this older persona to fit the bill. He really seemed to think he was a big shot.

He knows several kids in his class from elementary school (there are 5 feeder schools), and is now mentioning a boy from a different elementary school that he is "starting to become friends with." Yeah! His teachers seem really motivated and youthful and also parents themselves. Always a help!

Right away Leo memorized his schedule, didn't need to look at it after day one. He is amazing with directions and location, he never got lost. He seemed unfazed by having to switch classes.

The bus was our biggest concern - Leo did NOT like how long the ride was, and how it drove 20 miles an hour and stopped so many times. He had a huge headache the first couple days but now he's adjusted. He has learned how to move around to sit with friends as people get off, and keep himself entertained for the almost hour ride home. I said to myself that I'd give him 2 weeks to adjust, and if he still didn't like it I'd drive him. After a few days he loves it, a big social time for the kids. Recess and lunch is so short, the only real time the neighborhood kids can connect.

I loved helping him put together his multiple class binder with tabs and all of his grownup supplies. No more crayons! He loves that he needs a scientific calculator and is proud that he is in advanced math. Thankfully the school emphasizes organization - he writes in all of his assignments in a calendar and each teacher has a web page with links and the homework and even grades. Designed just for me and also Leo.

The math teacher is a classic math nerd, and seems to be one of our people. She is really dedicated and encourages kids to hang out in her class at lunch and ask for help. Leo really likes her, so I am happy that he can have fun with math again, his favorite subject and also his best strength.

Leo prefers to take lunch, although he is healthy enough to eat cafeteria food. He doesn't like a big production since there are always lines and cuts out of table time. He plays some kind of sport at lunch and that too is organized, so he is having fun.

Class sizes are big (28 in most classes, up to 50 for band and technology). We are looking at this year as a placeholder to see how he does. Will he thrive in large classes with so much independence? He qualifies for the "gifted" program (I really hate that word since all kids are gifted in different ways), so we can always look for those programs for next year if needed. Always hard to know what to do, but at least we are lucky to have choices. So, we went with a social decision - to have him go with the neighbor kids.

I do miss the emphasis on education from back east. There is less money per student here and so the schools are not as good as what we were used to. I do want him to have choices for college and really have a solid base to fall back on. I didn't, and had to take several remedial courses to be prepared for certain college courses. But I am getting too ahead of myself!

It's been a year since we moved from New England to the beautiful North West. Leo has friends, is identified still under the "jock" group. He has no best friend, just a few good friends. His best friend from back east visited this summer. They had a blast! We were so impressed how Leo was able to maintain a long-distance friendship at 11 years old. Phone and Skype. A true deep and lasting friendship.

Leo continues to play baseball, his first love, but is enjoying his Fantasy Football League and watching ESPN with his dad. He has also taken up hiking and camping with his dad, such a nature lover. He now walks with me on weekends up the hills in our neighborhood - a real workout for me!

Health wise, Leo is doing well. We continue to eat organic whole foods whenever possible, and eat gluten and sugar on occasion, usually for social reasons or going out to dinner. Unfortunately, Leo began having symptoms of Lyme disease back in February, so we started him on an anti-microbial regiment that includes antibiotics, and herbs/homeopathics for support. We are happy to be living out of Lyme Land, and are hopeful that by next year the microbes will be under control, including strep and mold. In some ways, he is no different than any other "normal" kid out there physically, except that he takes a boat load of pills.

I have seen shades of pre-adolescence, and recently Leo asked me to buy him deodorant. He is growing up! I no longer feel as anxious as I used to feel about going through puberty. I am confident he will maintain his functioning level, barring anything unusual happen with his Lyme. He has barely any symptoms - occasional facial tics that come and go when he is getting sick or nervous, or going through a die-off cycle with the Lyme.

And speaking of Lyme, I heard Leo recently tell his friend about his sister's condition (she has Chronic Lyme and was very very ill, but is now pain-free and doing well). Leo said "Can you imagine, having a headache that never goes away for 2 years?" Not to mention all her other 17 symptoms she had of pain. His empathy and deep understand of what our family goes through and had to go through really moved me. Such empathy, in a kid that used to have autism!

Sydney, Leo's 9 year old sister is doing very well. She is now pain-free, losing all her chronic symptoms this summer. Pretty exciting! She does get flares each week, but they are minor, and are only one or two symptoms that last about 4 to 5 hours. Her pathogen load is very low, and we feel we are close to remission. She will continue on her Chronic Lyme regiment for at least one more year. Lucky for us, we have great doctors that we see each month and she is steadily improving. She plays soccer and has 4 dance classes a week, not to mention lots of play dates and playing with neighborhood kids. She is really enjoying her newly found endurance, and is rebuilding her strength and stamina. She is free from pain, and we are all overjoyed.

Lastly, I should mention we had a great end of elementary school. I never got a chance to post about it. I was a blubbering mess as usual. I couldn't stop thinking about how much he has gone through, and now today he lives a normal life and has just "graduated" elementary school. He is in line with the other kids, laughing and joking around, high-fiving the teachers. So much pain and suffering, so much chaos long ago. Incredible.

Leo did get a little homesick for his old school the last couple weeks, and regretted not being able to graduate with his friends. He was positive but realistic about graduating with kids he didn't know every well. He prefers our current life, and is very wise about the dangers of Lyme and his weak immune system. He had a great summer - lots of site-seeing and hosting friends and family. Their turn to visit us instead of visa-versa. He loves having his own room and enjoys a more urban experience.

I make sure to tell him how much I love him and how proud of him every day. This is usually right before he waves me away while he meets up with the neighbor boy to go to the bus in the morning.

The First Autism Child

2010-09-23T11:13:00.001-05:00

This is a very fascinating article in The Atlantic about the "first" adult with Autism. He sounds like an incredible person that has been through so much.

NY Times: Genetically Engineered Salmon

2010-09-22T10:57:00.004-05:00

September 21, 2010

F.D.A. Hearing Focuses on the Labeling of Genetically Engineered Salmon

By ANDREW POLLACK

ROCKVILLE, Md. — So what do you call a salmon that is genetically engineered to grow fast?

If it is allowed to be sold in supermarkets, some consumer and environmental groups want it to be labeled as just that — so the engineered salmon cannot be mistaken for the regular fish. But the Food and Drug Administration says such a label might not be possible under its regulations.

The labeling issue was the focus of a daylong hearing here Tuesday as the F.D.A. considers whether to approve the sale of the genetically engineered salmon, which grow to market size in about half the time as regular salmon.

If approved, the salmon would be the first genetically engineered animal to enter the American food supply. The F.D.A. made no ruling on the labeling, but officials made clear that the agency was not permitted to change the label on a food merely because it was genetically engineered. The food itself must be different — in its taste, nutrition or safety, for example. For the same reason, no labels about genetic engineering appear on the many foods now sold that contain genetically modified corn and soybeans.

The consumer groups, which do not want the salmon approved at all, disputed the F.D.A.’s interpretation of the regulations. The groups also said that in an era in which people pay more attention to the sources of their food, they had a right to know when a product was genetically engineered.

“The least you can do if you put these products on the market is to let consumers decide for themselves, and you need labeling to do that,” said Patricia Lovera of Food and Water Watch, an advocacy group. “Every trend in the food industry shows consumers want more information, not less.”

But AquaBounty Technologies, the Boston-area company that developed the salmon, suggested that a “genetically engineered” label would be akin to a skull and crossbones, killing sales. Elliot Entis, a founder of AquaBounty, said critics were trying to “delegitimize the product through labeling.”

Some representatives of the food and biotechnology industries supported the F.D.A.’s policy about labeling. “The food label is not a playground for every bit of information someone wants to know,” said David B. Schmidt, president of the International Food Information Council, an industry group.

If there were no requirement to label the fish, AquaBounty or companies that market its fish could voluntarily label it. It is more likely, however, that other fish companies would want to label their products as not being genetically engineered.

But the F.D.A. has said even that labeling could run into roadblocks. Labeling must not be false and misleading, such as by implying that the nonengineered fish was in some way superior to the engineered fish. The agency has stopped some milk producers from labeling their product as coming from cows not injected with bovine growth hormoneunless they include a statement that the F.D.A. had found that there is no difference between milk from treated and untreated cows.

The timetable for approval of the salmon is not clear.

In a meeting Monday, F.D.A. advisers faulted some studies the agency used to conclude that the salmon was safe for people and the environment, though they did not say the fish was dangerous. If the F.D.A. were to now order AquaBounty Technologies to do more studies, any approval could be delayed by months.

What's for dinner? Frankenfish or cloned cow? So many things to choose from that isn't studied and without a doubt will change our DNA and destroy this generation.

Oracle Growth Plans Worry Rivals and Customers

WSJ: Herbal Supplements Face New Scrutiny

2010-09-17T11:56:00.010-05:00

by Laura Landro
Elderberry extract and acai to boost the immune system. Black cohosh to lessen the discomforts of menopause. Soy capsules to prevent bone loss and prostate cancer.
Many botanical supplements—made from the seeds, bark, leaves, flowers and stems of a wide range of plants—have been widely used as folk remedies for centuries. Americans have been consuming growing quantities of the supplements in hopes of warding off disease and easing symptoms of various conditions. But there is scant scientific evidence to support their health benefits.
Usage of botanicals is growing.
View Full Image
Getty Images
Cranberry
View Full Image
Getty Images
Elderberry
View Full Image
Getty Images
Milk thistle
View Full Image
Getty Images
St. John's wort
Now, the federal government is stepping up research into the safety and effectiveness of a wide range of over-the-counter supplements, including plant oils, garlic, soy, elderberry, licorice, black cohosh, St. John's wort and the Asian herb dong quai. The aim is to better understand how compounds in the plants affect health and to help consumers make more informed choices about supplements, which can interact with prescription drugs, cause side effects or lead to new health risks. Sales of botanical supplements in the U.S. topped $5 billion last year, up 17% from five years earlier, according to the non-profit American Botanical Council.
"Sometimes people assume because a product is natural, it is also safer. But these compounds can have both benefits and potential side effects and we need to understand both of those," says Floyd Chilton III, director of the Center for Botanical Lipids and Inflammatory Disease Prevention at Wake Forest University Baptist Medical Center in Winston-Salem, N.C. Dr. Chilton's center received a $7.5 million federal grant to study botanicals, including whether plant oils such as echium and borage can help play a role in preventing cardiovascular disease, asthma and diabetes.
"People are using supplements for purposes for which they were not intended," such as treating health conditions they have self-diagnosed, or using multiple supplements in combination with prescription medications, says Marguerite Klein, director of the Botanical Centers Research program at the National Institutes of Health. One concern, she says is the heavy use by women of black cohosh to treat menopause symptoms, such as hot flashes. Limited research seems to support the black cohosh's benefit. But it isn't known how the botanical works. Black cohosh has been linked in some patients to liver damage, and breast-cancer patients are often advised to avoid using it because its effects on breast tissue are unknown.
Helping to spur the research initiative are the Office of Dietary Supplements and the National Center for Complementary and Alternative Medicine, both part of the National Institutes of Health. The agencies last month awarded grants totaling about $37 million to five dietary supplement research centers, expanding a program that has already awarded more than $250 million in research grants for herbs and botanicals since 2002. The NIH is also funding research into botanical products through the National Cancer Institute, which is interested in how components in botanicals might influence cancer risk and tumor growth.

The Powers of Garlic
1:50
Adding garlic to your diet has several health benefits including assistance in warding off cancer and boosting the immune system. Video courtesy of Fox News.
Studies funded by the federal grants have so far shown that chamomile capsules may help reduce anxiety compared to a placebo and that an extract from the milk thistle plant can interfere with the life cycle of the hepatitis C virus. They also have refuted some purported benefits of botanicals, showing, for instance, that ginkgo biloba does not prevent heart attack, stroke, or cancer, or stem memory loss and that St. John's wort was no better than a placebo in treating symptoms of attention deficit hyperactivity disorder in children and teens.
Unlike drugs, which must be tested in clinical trials and approved by the Food and Drug Administration before they can be marketed, botanicals and other supplements don't require regulatory approval. The FDA in June began requiring all supplement makers to follow strict quality manufacturing standards, but the agency only periodically inspects plants.
An investigation published in May by the General Accounting Office found deceptive marketing practices at a number of online retailers, including claims that supplements could prevent or cure conditions such as diabetes, cancer, or cardiovascular disease. The investigation also found trace amounts of potentially hazardous contaminants, such as lead or bacteria, in 37 of 40 herbal dietary supplement products it tested.
Tod Cooperman, president of ConsumerLab.com, which tests supplement brands for quality, says the group finds problems with about 25% of all supplements, and especially with herbal products, many with ingredients from overseas. A recent review of supplements made from ginseng—commonly taken to boost energy and vitality—found that 45% failed quality tests because they didn't contain the advertised amount of ginseng or were contaminated with lead. Test results and other information are available to members, who pay $30 annually.
Consumers also can find information about potential uses, benefits and risks of dietary supplements at federal websites ods.gov and nccam.gov. Another government site, Medlineplus.gov, grades scientific evidence on a variety of supplements.
William Cefalu, director of the Pennington Biomedical Research Center at Louisiana State University in Baton Rouge, says researchers are only beginning to understand how thousands of different compounds in a single plant may interact, and how the concentration of a particular plant chemical affects its potency. For example, peppermint tea is considered safe to drink, but peppermint oil, often taken for irritable bowel syndrome or indigestion, is much more concentrated and can be toxic if used in high doses.
Because the potency of wild plants can vary, some researchers are cultivating their own. At the Center for Botanical Interaction Studies at the University of Missouri in Columbia, 600 types of soybean seeds are being cultivated to study different concentrations of the same compounds in the plants and how they might work to prevent prostate cancer. The center is also growing 60 types of elderberries to study the plant's possible role in boosting the immune system against infection and fighting cancer and inflammation in the body. Center director Dennis Lubahn says there may be variations in individual plants that will make a difference in how well they fight disease. "We've come a long way from the traditional medicine woman sampling leaves in the forest," he says.
Petal Power?
Researchers are studying if plant-based supplements on the market can help treat many diseases and conditions.
BOTANICAL POSSIBLE BENEFIT POSSIBLE RISKS
Black cohosh Prevention of hot flashes and other menopause symptoms, may help improve bone density. No long-term safety data on breast tissue; may cause liver damage.
Soy(phytoestrogens) May lower risk of LDL ('bad') cholesterol; reduce hot flashes and other menopause symptoms. Possible role in development of breast, uterine cancers.
Milk thistle May promote growth of liver cells, improve symptoms of liver disease; possible treatment for hepatitis C. May lower blood-sugar levels in diabetics; allergic reactions, gastrointestinal side effects.
Ginseng May lower blood sugar, boost immunity, increase stamina. Headaches; allergic reactions; sleep and gastrointestinal problems.
Elderberry Anti-oxidant, may lower cholesterol, boost immune system, improve heart health. Diuretic effects; no scientific data on benefits.
Cranberry (extracts, tablet, capsules ) May prevent urinary tract disorders, stomach ulcers, dental plaque; anti-cancer benefits. Could cause GI upset; may interact with blood-thinning drugs.
Evening primrose Modest benefits for eczema; may be useful for rheumatoid arthritis and breast pain. May cause gastrointestinal upset, headache.
St. John's wort May help treat mild depression. May limit effectiveness of prescription medications; unproven as treatment for major depression.
—Email informedpatient@wsj.com

.It is plainly obvious why the government and their special interest groups (pharm. companies) are spending millions of dollars looking into natural treatments. As always, it's the money they are losing to this new market - 5 billion to be exact as stated in the article. I also noted there were no deaths or serious complications using these alternatives mentioned as an anecdote or otherwise. The Possible Risks column are filled with symptoms that "may" appear. Symptoms that are similar and common to prescription drugs. And actually, they do not look as bad as a whole in comparison. We read daily about newly uncovered risks from prescription meds and even deaths. I am hopeful this is a sign we are moving in the right direction now that money is going into different pockets. There are choices out there and so are answers to chronic illness. We just have to be in charge of our own health and get it done.

Father of ABA, Dr. Lovaas, Passes

2010-08-20T12:23:00.003-05:00

I took his passing very hard, much like I did when Bernard Rimland passed a while back. Both of these men founded what is now today most commonly used to treat autism.I was so sad that I didn't know how to put it into words what this man has done for our children. But, a few days later I read an email sent to my support group from our former advocate (she saved us tons of money and time and is also an incredible autism mom herself). Karen Simon says it best:

I'm not sure parents of newly diagnosed kids know of the significance of Ivar Lovaas to all of the ABA programs our kids have today and the idea that a kid can become indistinguishable. We met him often when Christopher was in his replication site in Stockton, California from 1996-1998 and what I loved was how open he was to what needed to be done. He had been saddled with {and still is} the reputation that he was a rigid and single minded man stuck on his original findings and insisting that all therapies be done in this manner. The problem as he told us is that he needed to prove to the naysayers that intensive 1-1 therapy done in a systematic and data driven approach worked and in order to do this he had to exactly replicate his findings of 1987 so more school districts would fund these programs.

What my husband and I found, however, was a kind and caring man who never stopped learning. He encouraged us to get speech therapy, OT , music therapy and even learning the computer although that was new to him . He had a daily physical component to his program which included learning to ride a bike, swim and using all playground equipment. He told us the importance of parent involvement. He had my husband give him. He asked Jim to give him a list of the computer programs and music CD's that we found on the internet that we were using for Christopher so that he could share them with other families. He started the first informal support group among parents of his kids. He NEVER wanted kids to sit a table for hours at a time. His program was very fast paced and fluid and kids were in and out of the chair every 2-3 minutes and many did become indistinguishable and those who didn't did much better as a result anyway.

It pains me that in many ways we are all still fighting this fight even though his is over, but I wanted to share with everyone that this was a man I truly loved for giving me my son back in the days when there was no hope given to any parents of children with autism.

Rest in Peace Ivar Lovaas

Saving Sammy

2010-07-15T21:28:00.003-05:00

I finally got around to catching up on research. The fairly new book (Sept.09) Saving Sammy and Today Show interview is a true inspiration. I enjoyed watching the interview and was so happy to know that the mom has shared her story.

The story is about her son that was diagnosed with what I think is severe OCD but actually had PANDAS.

The fear and hesitation in the doctor voice made me sad, but I am glad she did put herself out there. Rare for anyone in this business of "new" illnesses caused by bacteria or viruses that were once thought benign such as Lyme, Bartonella, Babesia, Mycoplasma, and last but not least, Strep.

I dream of the day that doctors refer to dynamic, updated, guidelines that reflect the children that reside in our classrooms and in our homes. Our generation.

NY Times: Childhood Combo. Vax and Seizure Risk

2010-06-28T18:09:00.002-05:00

June 28, 2010

Childhood: Combination Vaccine and Seizure Risk

By Roni Caryn Rabin

Toddlers who get a vaccine that combines the measles-mumps-rubella and chickenpox immunizations are at twice the usual risk for fevers that lead to convulsions, a new study reports.

The risk for a so-called febrile seizure after any measles vaccination is less than 1 seizure per 1,000 vaccinations; but among children who received the combined vaccine, there is 1 additional seizure for every 2,300 vaccinated, said Dr. Nicola Klein, the study’s lead investigator and director of the Kaiser Permanente Vaccine Study Center.

The reactions, which occur a week to 10 days after vaccination, are not life-threatening and usually resolve on their own. The fever-related convulsions can be frightening, but they are brief and not linked to any long-term complications or seizure disorders.

To do the analysis, published this week in the journal Pediatrics, Kaiser Permanente researchers used the government’s Vaccine Safety Datalink, a safety surveillance system that compiles data on nine million members of eight managed-care organizations.

They compared seizure and fever reactions among 83,107 1-year-olds who had combined M.M.R. and chickenpox vaccinations with reactions of 376,354 toddlers who received separate vaccines.

“Unless parents have a strong preference for the combination vaccine, providers should use a separate vaccine,” Dr. Klein said.

Freakin' FINALLY! I wonder what will happen now that we have "real" evidence about the consequences of these vaccinations.. Since the epidemic of chronic illnesses in children isn't enough!

Heart Risks Seen in Diabetes Medicine

FDA Urging Limited Antibiotics In Meat

2010-06-28T11:24:00.003-05:00

FDA urging meat producers to limit antibiotics given to animals

Mary Clare Jalonick, Associated Press Writer, On Monday June 28, 2010, 11:08 am EDT

WASHINGTON (AP) -- The Food and Drug Administration is urging meat producers to limit the amount of antibiotics they give animals in response to public health concerns about the drugs.

The FDA said the use of antibiotics in meat poses a "serious public health threat" because they create antibiotic-resistant bacteria that can infect humans who eat the meat. The agency is recommending that producers use the drugs judiciously, limiting their use unless they are medically necessary and only using them with the oversight of a veterinarian.

"Developing strategies for reducing (antibiotic) resistance is critically important for protecting both public and animal health," the agency said in draft guidelines printed in the Federal Register on Monday.

The agency said misuse and overuse of the drugs has led to the development of antibiotic-resistant bacteria. Antibiotics have been used in meat to kill pathogens for more than 50 years, and the FDA acknowledged that practice has had "tremendous benefits" to animal and human health.

Of greater concern, the agency said, is when producers use antibiotics on healthy animals to speed growth and reduce feed costs. The agency is also concerned about antibiotics that are given continuously through feed or water to entire herds or flocks of animals.

The agency said it is expecting to issue more specific guidelines in the near future.

I wonder what provoked some attention here. As usual, the words "concerned" "urging" and "using drugs judiciously" means nothing. No one will do anything until they have to, as they are making money just fine as is. Is this just FDA P.R.? At any rate, this isn't in the papers, and I am sure we can set the clock for any viable action to be taken in 10 years from now. Apparently things aren't bad enough for real action - we need the suppliers to start losing money.

Can Strep Throat Lead to Behavior Problems?

2010-03-19T12:11:00.003-05:00

Can Strep Throat Lead to Behavior Problems?

By THE NEW YORK TIMES

Can a bout of strep throat lead to serious behavioral problems like obsessive hand washing or odd tics in children?

Steve Kagan for The New York Times Obsessive hand washing sometimes follows strep infections; are the two related?

The condition, known as Pandas, for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection, remains a controversial topic among child health experts. Dr. Robert King and Dr. James Leckman of the Yale Child Study Center, who recently joined the Consults blog to answer readers’ questions about Tourette’s syndrome, here respond to readers concerned about the link between strep tics and obsessive-compulsive disorders.

RS from N.J. writes:

If your child shows symptoms of a tic disorder, obsessive-compulsive disorder or Tourette’s syndrome, you should have them checked for strep. Pandas, could be the cause. A simple blood test will tell if your child’s “strep titers” are at an abnormal level.

This can be treated with antibiotics. Worth checking out before you subject your child to psychiatric medications. Not all doctors believe in Pands. But let me tell you, it’s worth finding a doctor who does.

For more info check out the Web site Saving Sammy: Curing the Boy Who Got O.C.D.

Bethany Brinton from Salt Lake City asks:

The first sign of scarlet fever is obsessive hand washing, hours before the rash; Tourette’s is in the strep/O.C.D. family, or Panda. Why don’t they treat it with I.V. antibiotics and probiotics?

Dr. King and Dr. Leckman respond:

Pandas, or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, remains a controversial topic for many experts in Tourette’s.

Two recently completed intensive longitudinal studies found little evidence to support the existence of Pandas as presently defined. Since the onset of tics is common in middle childhood and as many as half of young school age children may have strep throat in a given year, the co-occurrence of new tics and a strep infection will happen as mere coincidence, without any specific causal link, in a certain number of children.

Furthermore, since stress, including the stress of illness, can be a cause of tic flare-ups, it is not always clear if or when there is a more specific causal link.

That said, some researchers, including ourselves, suspect that the label of Pandas is probably best reserved for a subset of children with apparently strep-related O.C.D. or tics, and that it is this subset of cases that need to be more intensively studied. Such cases probably fall on a continuum with Sydenham’s chorea and other post-infectious disorders that can lead to an inflammation in the basal ganglia, a part of the brain involved in motor control and learning.

These more narrowly defined Pandas cases appear to have an abrupt sudden onset, over the course of two days or less, and are marked by separation anxiety and obsessive-compulsive symptoms, a loss of writing skills and sleep problems. Tics are often present, but they can also confuse the picture, especially if they had been present in some form prior to Pandas onset.

The overuse of antibiotics has its hazards, both for individuals and communities, including allergic reactions and fostering the development of antibiotic-resistant strains of bacteria. Hence, antibiotics — and certainly intravenous antibiotics — are not indicated for the typical case of tic disorder but should be reserved for cases where there is clear-cut and convincing evidence that the onset or recurrent flare-up of tics/O.C.D. is linked to strep infection.

Although there is at least one well done study that supports the use of intravenous immunoglobulin for well-defined Pandas cases, this work needs to be replicated. Plans are now under way for such a replication study in a carefully defined group of children who meet the narrower criteria described above; the study will again be performed at the National Institutes of Health’s Clinical Center in Bethesda, Md., by Dr. Susan Swedo, who first coined the term Pandas more than a decade ago.

mlw from Brooklyn asks:

What percentage of children could be misdiagnosed as Tourette’s and actually have Pandas?

Dr. King and Dr. Leckman respond:

Another great question. Once we have a reliable and valid way of making a diagnosis of Pandas, we should be able to provide an answer.

As noted above, there is much controversy as to whether Pandas exist and, if so, how should they be defined. At present, in making a Pandas diagnsosis, we focus much more on the sudden, abrupt onset — unusually in less than 48 hours — of severe anxiety, obsessive-compulsive symptoms, sleep problems and behavioral regression and a marked deterioration of writing and drawing abilities. Tics may be present, but they are probably not a key feature.

I am happy to see a major newspaper covering this again. My BFF told me about Saving Sammy, a must read. It's fascinating how the medical community continues to be divided over the viability of a P.A.N.D.A.S. diagnosis. Must be about money. Or the fact there is no one-size-fits all. When will they get there is no such thing?

Guidelines for Choosing a BCBA

2010-03-04T10:59:00.002-05:00

I'm not really sure why I'm posting this - it's not user friendly. It may be helpful when educating your local 0-3 program or school district. Here is the handbook.

DSM-5 Update

2010-02-12T13:06:00.003-05:00

I think adding Asperger's to the Autism Spectrum category is long overdue. After being in the field only 9 years (I am still a newbie) I can completely agree that there is more in common than not with autism and asperger's. I believe the grouping will get children more services and help raise awareness that autism is not a hopeless, untreatable disability, regardless of where you are on the spectrum. United in the deficits we share is more powerful and productive for practitioners, schools, and our communities. Autism is a spectrum disorder, there is no one-size-fits-all, and this decision will attest to that.

As far as Aspies are concerned, why can't Aspies still be considered Aspies, congregate as such and thrive in their communities as they always have been? Factions within the Autism community is here to stay! Unfortunately discrimination between these factions will continue as well. My hope is that one day groups will tolerate each other, recognizing our individuality as a faction and as our own unique people, in our own parking spot along the spectrum.

Go on over to the DSM-5 website and comment!

Jim and Jenny Explain the Politics Behind the Lancet's Decision

2010-02-05T19:20:00.004-05:00

Jenny and Jim and Generation Rescue couldn't have said it better regarding the hard core politics that are going on right now in the world of vaccines and the autism connection. Their letter explains it all. I am deeply grateful to these media faces and to Generation Rescue's continuous efforts to disseminate accurate information. I have a heavy heart for those new families that read the lies and make life changing choices that they may have to live with for a long time.

I dedicate tonight's glass of cabernet to Jim and Jenny. Yeah!

Autism Rise in Los Angeles

2010-02-02T12:36:00.002-05:00

The wizards have finally figured it out - that affluence and diagnosis are related. Hey wizards, so are services and outcome. This article is so dumb, not sure what the point is. Now what? Will more money be allocated to poorer school districts? Will a televised fundraiser raise money to significantly help out these children? Such a waste of space.

Kettleman City, CA and Birth Defects

2010-01-31T20:20:00.004-05:00

According to this article Ketttleman City is toxic because of Chemical Waste Management Inc

They own us.

I grew up in central California, so I am very familiar with the sights and smells of the endless sea of manure and cows. One can smell Kettleman City way before you even get there as you drive along I5. Interestingly there was no mention of the mass production of cows living in horrendous conditions that we've all read about and seen on t.v. And now this, which I am sure is related. I am happy for Greenactionand hope their families don't suffer for nothing.

Rifelabs.com Dave Nelson passes away

2010-01-26T18:25:00.003-05:00

I was very saddened to learn that Dave Nelson, the owner of RifeLabs.com, passed away suddenly in October. No, I wasn't close to him, just one of many customers that purchased a Rife machine from him over a year ago. I knew instantly he was a person with integrity. I actually had a couple interesting conversations with him - he was one of us, someone that "gets it." He knew what my life was like, and patiently answered all my questions about this new therapy. Dave has helped so many people maximize their wellness with his machines. He will be missed.

So Much Newness!

2010-01-15T13:20:00.001-05:00

So much newness! A new house, school, community. And Leo is 11!

The kids LOVE it here, although they miss their friends. My biggest concern, of COURSE, was my big boy. Would I undo all that we've done? We moved largely to be out of a tick endemic area. Which kid is most important? Upsetting the apple cart vs. having a cleaner environment for my daughter?

Fortunately he seems to be thriving, also demonstrating there are no holes in his programming and that his recovery is real. Out of his comfort zone of the same kids, school, neighborhood, and community. It amazes me how he has the confidence and adaptive skills to adjust to EVERYTHING being new.

The cleaner environment seems to help HIM in addition to Sydney, as he does struggle with his bacterial load, including a lyme co-infection Mycoplasma fermentans. He is asymptomatic about 95% of the time (tic-free, headache free).

Leo continues to love sports, loves playing basketball and baseball. Still amazes me he can do it and CHOOSES it after he had such a hypersensitivity in his face for everything, let alone flying objects. He is actually good at it! And again, with completely different kids in a different league/culture. Another adaptation.

Leo had a very successful class birthday party (just the boys) at our local gym. I can't believe he is 11 and that puberty is around the corner. Our next milestone. Grandma visited and so his birthday celebration was big in spite of being in transition.

We are still in LYME HELL with my 8 yr old daughter, but she has made progress this past year. We are beginning year 2 of her treatment. My goal is that she is pain-free by year 3 - seems to be a fair marker. So, I spend all day doing the things you know i am doing as a parent with a special needs child.

The kids play every day with the neighbor kids in our new cul de sac. It's so surreal to me, how happy they are running around, knocking on doors. Going back and forth between houses. A really really nice group of kids (so far, I am in the honeymoon phase!)

The kids have their own room, and as you can imagine they relish their new TURF. It's very cute how they are coming into their own as they mature.

I unpacked my homeopathic school books - I hope to start studying as things calm down settling into the new house. It'll wax and wane as Sydney's needs vary.

All in all I am happy with the new year, and hopeful that Leo will continue to thrive and that Sydney continues making progress toward recovery.

Kid's Jewelry

2010-01-13T11:07:00.002-05:00

For China's low-cost jewelry makers, it was an open trade secret: The metal cadmium is shiny, strong and malleable at low temperatures, regardless of its health hazards. And it's cheap.

Anyone with a chronically ill child or a child with special needs has probably heard this years ago. Like most things - hormone milk, organic this and that, green living. What steams me is that no one has mentioned how there is a huge problem with how we monitor toxins. Since jewelry isn't food, the FDA doesn't have to worry about it. Or light-up shoes that contain mercury. Light-up candy canes for your yard and other holiday crap. Oh right, and the toy thing. Time and time again this stuff gets into our systems. Easily. Another reason why we have a damaged generation.

So far, nothing from toy stores or anything from OUR government. It's CHINA'S fault per usual. But is it? Who is accountable for what goes into our children's mouths, what they wear, what they play with, and what is in their homes?

Age of Autism Blog

2009-11-23T13:23:00.005-05:00

I can't even begin to talk about the latest crap that's being published. First, my beloved Wired magazine betrayed me. Next on my shit list, the Chicago Tribune. One would think it can't be a slow news day with the swine flu and the health care debate to keep them busy...But, thanks to our pal Kim Stagliano, I don't have to go down that dark path by commenting. Just check out Age of Autism!

Things I'm Grateful For

2009-11-11T19:51:00.005-05:00

I have been in the WORST mood all week, so figured I need to somehow find a way to gain perspective by writing something POSITIVE. I'm forcing myself! Sydney has been so bad lately, home most of the time largely due to the pig flu wrecking havoc on her Lyme symptoms. I feel like I'm losing my mind, I find myself walking around in a fog thinking "What the fuck?"

It's Veterans Day. Home ALL day. "Yay!" We went to play basketball and climb at the gym. Next, had lunch with dad. Then off to get Leo a much-needed haircut. What else can we do to make this a good day that's not surrounded by the t.v.?

So here goes...painful as it is:

I'm grateful that Leo can get a haircut (Supercuts). Long ago he'd panic and throw up by the sensation of hair falling and getting input that wasn't visual. I can even thumb through a magazine while he happily chats with the hair dresser on his own about nearby hiking trails. I still remember those days, holding his hand everywhere outside the house, barely tolerating a busy atmosphere. I sit there with Sydney next to me, yeah she's a very sick little girl, but I look over admiringly at my 11 year old boy and I am so proud of how far he has come.

I can't forget EVER. I don't want to ever become complacent or lose myself to my little world. I want to always be aware.

So that's it! I did it!

Nutrition Facts for a Banana

2009-11-10T20:17:00.002-05:00

Did you know that bananas have fluoride? 2 grams of protein? My son doubted me when I told him that bananas have protein, so we looked it up. Go figure, a government site is useful!

New Autism Numbers

2009-10-11T13:36:00.007-05:00

It's official according to the CDC and other government bodies. The rate of autism has increased no matter what. Depending on what study you look at, the numbers are below 1 in 100. Will these new numbers be the tipping that will cause change in the way we take care of our children? Will it change how we live?

Over reporting? Even Michael Kogan, lead author of the HRSA study states there are unaccounted for percentages in the rise. I didn't get a call, did you? Doubtful Leo's former pediatricians didn't account for him. And how about those that say we must "proceed with caution?" What? Cautiously treat children that desperately need services? When a very small percentage get the level of services they need already?

Do we treat the statistics or do we treat what we see before us?

I was sitting at dinner the other night with new friends after Leo's baseball game. Our first social dinner out since our move. For the day I forgot all about health: Sydney and Leo were having a good health weekend. The day was extraordinary beautiful, a perfect game day. Leo's bun-free order didn't even register. It was so nice! Come to think of it, it has been a break to not know almost every single child in Leo's 5th grade like I did at our old community. That constant reminder of our New Normal.

My bubble burst as somehow the topic of the uneaten bun comes up. The mom offers that the restaurant has a gluten-free menu available upon request. I smile widely and say all the right things back. The dad joins the conversation and says they "used to think Taylor had a gluten problem, but that wasn't it. They still don't know what it is." Usually this is my cue to go off about the toxic load, how we are all bearing children with GI and immune problems from the get go. But, I was tired. I was bummed. I didn't even say something sympathetic or ask more. Not me! Did I subconsciously think our new community was immune to the New Normal?

And what is the New Normal anyway? The secret isn't out yet, it's not okay to openly talk about it. Doesn't register with most parents, as they often think they are the ONLY ones with sick kids. Many parents don't even KNOW their kids are chronically ill because their friends, their pediatricians, don't phrase these problems as chronic illness. I've gone through 4 pediatricians. They all didn't show concern when I asked them "Aren't you concerned that all these kids are sick once a month?" Isn't that abnormal? All 4 say the same thing, like good little soldiers courtesy of the American Academy of Pediatrics. Why think for yourself when you are protected to say and BELIEVE the party line?

Here is the new normal (scroll down toward the bottom of page) that I SEE EVERY DAY and I have consistently seen since Leo was born almost 11 years ago. What do you see? And it's not just me that sees this. Just this summer my good friend Janice that had a girl in Leo's class and I sat down and looked at the lovely 4th grade class of "typical" children in our affluent public classroom. I knew all the boys and Janice knew the girls since our kids have grown up with them.

Just a handful, on average, 5 out of 22 children were "normal". These 5 kids did NOT have: ADHD, ADD, an ASD, a mood disorder, an LD, Sensory Integration, chronic eczema, constipation, asthma, allergies (food, environmental), P.A.N.D.A.S., Lyme disease and/or co-infections, a behavior plan, ODD, chronic colds, bronchitis.

About 5 out of 22 children. That gives you roughly 22% of health. Is it just me or does that not scare the crap out of you?

Hepatitis B Vaccine Triples the Risk of Autism in Infant Boys

2009-10-08T11:10:00.002-05:00

Posted by: Dr. Mercola

October 08 2009

A new study has shown that giving Hepatitis B vaccine to newborn baby boys more than triples their risk of developing an autism spectrum disorder.

The study’s authors used U.S. probability samples obtained from National Health Interview Survey (NHIS) 1997–2002 datasets.

The conclusion states that: “Findings suggest that U.S. male neonates vaccinated with hepatitis B vaccine had a 3-fold greater risk of ASD.”

The authors also noted that an earlier study by them found that hepatitis B vaccination was associated with receipt of early intervention and special education services.

The new study used a different database than their earlier study, and they found same results, suggesting a validation of their findings.

Sources:

Age of Autism September 17, 2009

Annals of Epidemiology September 2009: 19(9); 65

One could go on and on with these studies. So much evidence is pointing to the fact we are replacing acute with chronic illness and major disorders.

NY Times: Childhood: Autism Diagnoses Rising, U.S. Reports

2009-10-06T21:08:00.004-05:00

By BENEDICT CAREY

More than 1 in 100 American children and teenagers may have autism, Asperger’s syndrome or a related developmental problem, although such diagnoses often do not hold up, according to a government report released on Monday.

The estimate, based on a telephone survey of some 78,000 households and published in the journal Pediatrics, is the highest yet of the prevalence of so-called autism spectrum disorders, which include everything from severe autism to milder social difficulties to “pervasive developmental disorder,” a description given to many troubled children.

Nearly 40 percent of the children in the study who were given such a diagnosis grew out of it or no longer qualified for it, the study found. The estimate is based on those whose parents said they were currently struggling with one of the disorders.

Prevalence estimates for autism-related disorders have increased so quickly over the past decade — to 1 in 150 in 2007, from 1 in 300 in the early 2000s — that researchers have debated whether the disorder is in fact becoming more common or is simply diagnosed more often.

The new survey is not likely to settle the question. “This is an excellent study, but what it looks at is the prevalence of the diagnosis, not the disorder,” said Dr. Susan L. Hyman, a pediatrician at Golisano Children’s Hospital in Rochester. “The next step scientifically is to see whether those diagnoses are being made accurately.”

Huh. Funny how this big news just didn't get me all fired up. We've known this is rising and we all talk about it constantly. We live it, but amongst ourselves. Until a friend got me thinking about this "news", I figured I should post something from an acceptable media outlet like the New York Times. Reminds me of the feeling I had watching Autism Speaks or Jenny McCarthy get plastered all over the news the last few years. A little invasive into my personal world. Especially the recovery part, it made me a bit paranoid. A good invasion of course!

It's "the" talk for now. What will, if anything, people DO about it? What will change? 1 in 150 wasn't rock bottom. Will 1 in 94 be?

For P.A.N.D.A.S. Parents

2009-09-30T12:25:00.003-05:00

Take a look at this forum: Latitudes.org

Thanks Amanda for reminding me about it. There are a lot of parents that have tried IVIG and other things over there for P.A.N.D.A.S. Other parents are the best source of info!

Strep link to OCD in Mice

2009-09-30T12:01:00.005-05:00

Antibodies to strep throat bacteria linked to obsessive compulsive disorder in mice

August 11, 2009 05:02 PM

A new study by researchers at Columbia University Mailman School of Public Health's Center for Infection and Immunity indicates that pediatric obsessive-compulsive disorder (OCD), Tourette syndrome and/or tic disorder may develop from an inappropriate immune response to the bacteria causing common throat infections. The mouse model findings, published online by Nature Publishing Group in this week's Molecular Psychiatry, support the view that this condition is a distinct disorder, and represent a key advance in tracing the path leading from an ordinary infection in childhood to the surfacing of a psychiatric syndrome. The research provides new insights into identifying children at risk for autoimmune brain disorders and suggests potential avenues for treatment.

OCD and tic disorders affect a significant portion of the population. More than 25% of adults and over 3% of children manifest some features of these disorders. Until now, scientists have been unable to convincingly document the association between the appearance of antibodies directed against Group A beta-hemolytic streptoccoccus (GABHS) in peripheral blood and the onset of the behavioral and motor aspects of the disorder. As a result, treatment strategies were restricted to targeting symptoms rather than causes.

Strep throat bacteria, or GABHS, are known to cause autoimmune disorders such as Sydenham chorea, with symptoms such as fever and uncontrolled tics of the face or extremities in susceptible individuals, prompting some scientists to suspect that GABHS could play a role in a syndrome known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), a rapid-onset and episodic form of OCD and tic disorders observed in some children. The latest study by CII researchers supports the hypothesis that some neuropsychiatric syndromes may be triggered by direct action of GABHS-associated antibodies on the brain. Whether environmental factors other than GABHS can lead to similar effects is as yet unknown.

Using a mouse model of PANDAS, Mady Hornig, MD, associate professor of epidemiology at Columbia University Mailman School of Public Health, and colleagues demonstrate this suspected link between GABHS antibodies and the psychiatric symptoms of the disorder. Immunizing mice with an inactivated form of the bacteria, CII researchers found that the mice exhibited repetitive behaviors reminiscent of children with PANDAS. Injection of antibodies from the immunized mice into the bloodstream of non-immunized mice replicated these behaviors.

"These findings illustrate that antibodies alone are sufficient to trigger this behavioral syndrome," said Dr. Hornig. "Our findings in this animal model support and may explain results of Swedo and colleagues in treating children with PANDAS using plasmapheresis or intravenous immunoglobulin (IVIg). They may also have implications for understanding, preventing or treating other disorders potentially linked to autoimmunity, including autism spectrum, mood, attentional, learning, and eating disorders."

"This work provides strong corroboration for a link between exposure to infection, development of an autoimmune response, and the onset of repetitive behaviors and deficits in attention, learning, and social interaction," says CII Director W. Ian Lipkin, MD, John Snow Professor of Epidemiology, and professor of Neurology and Pathology at Columbia University. "Further investigations in this strep-triggered, autoimmune mouse model of PANDAS will promote the discovery of more effective interventions for these disabling disorders and guide the development of robust prevention strategies."

Source : Columbia University's Mailman School of Public Health

No shocker here, but wanted to post something new on the topic. At least it's not being ignored and now the almighty medical community is happy they can make a solid connection. Goody for them.

Behavior Analysts, Inc and their Fall Training Series

2009-09-30T11:56:00.002-05:00

Just passing this along since I get their email updates. Just LOVE these guys. They are the writers of the ABLLS.

New Workshops and After School Groups

Behavior Analysts, Inc would like to announce two exciting
opportunities. First, is our Fall Training Series which will be held
at our clinic in Walnut Creek, CA in October and November, 2009.
There will be a variety of topics for parents and professionals.
Second, is our new Learn and Play Groups for children diagnosed with
Autism. Groups will take place at our clinic in Walnut Creek, CA
after school hours. Please click the links below to see the flyers
for more information.

http://cts.vresp.com/c/?ChaosCreative/335c0793bd/1f2588c246/739850c4b9

http://cts.vresp.com/c/?ChaosCreative/335c0793bd/1f2588c246/d24d4648fa

Leo's Standardized Testing Scores from 4th Grade

2009-09-30T11:43:00.002-05:00

The test scores came in the mail! They are not GREAT, but Leo is still in goal range for everything except math being advanced. Like last year he was behind his school's average. The good news is that he dramatically improved from last year! He learned something after all during his mediocre year.

It is so interesting as they track each year on a big spreadsheet eventually totaling 6 years of student performance. My huge fear is that he is going to drop out of "goal" eventually in writing because he is on the low end. Maybe in reading at one point too. Although I believe the standardized testing has huge flaws, it is basically my only barometer for how he is doing compared to the regular world. And my only glimpse into any future issues as we approach middle and high school. Well, another round of testing at Yale would do it, but who'd want to go through that again?

It is validating we chose the new school we did because they have the best reading/writing program in the area. I can already see how much harder he has to work in writing - making reading connections EVERY DAY in his reading log and answer questions. Just what the doctor ordered, going deeper. Why do characters behave the way they do? What are their intentions, motives, desires? Becoming the character....relating. Theory Of Mind, our old friend. This will never be a strong area, so I'm happy Leo likes his teacher and seems more content doing the work. Hopefully we can give him as much practice as possible in finding the things he needs to look for. Here are the scores:

Reading: Leo 263 /School Avg. 282 for the category.

Specific area that was below: Making reader/text connections: 3 out of a range of 6-8.

Writing: Leo 243/School Avg. 270 for the category.

Specific area below: Composing/Revising: 10 out of a range of 12-16.

Math: Leo 297/School Avg. 286.

Specific area that was below: Geometry; approximating measures: 3 out of a range of 4-6.

None of the weak areas are a surprise! It's great to know what we need to continue to work on at that there are no surprises (yet) anyway.

Is swimming pool chlorine fueling the allergy epidemic?

2009-09-15T12:55:00.003-05:00

By Megan Brooks

Mon Sep 14, 10:15 am ET

NEW YORK (Reuters Health) – Swimming in a chlorinated pool may boost the odds that a child susceptible to asthma and allergies will develop these problems, a study released today indicates.

"These new data clearly show that by irritating the airways of swimmers chlorination products in water and air of swimming pools exert a strong additive effect on the development of asthma and respiratory allergies such as hay fever and allergic rhinitis," Dr. Alfred Bernard, a toxicologist at the Catholic University of Louvain in Brussels, Belgium, noted in an email to Reuters Health.

"The impact of these chemicals on the respiratory health of children and adolescents appears to be much more important -- at least by a factor of five -- than that associated with secondhand smoke," Bernard noted.

Taken together with his team's prior studies, he added, "There is little doubt that pool chlorine is an important factor implicated in the epidemic of allergic diseases affecting the westernized world."

In the current study, Bernard and colleagues compared the health of 733 adolescents, 13 to 18 years old, who swam in chlorinated outdoor and indoor pools for various amounts of time with that of 114 "control" adolescents who swam mostly in pools sanitized with a concentration of copper and silver.

In children with allergic sensitivities, swimming in chlorinated pools significantly increased the likelihood of asthma and respiratory allergies, the researchers report in the journal Pediatrics.

Among "sensitive" adolescents, the odds for hay fever were between 3.3- and 6.6-fold higher in those who swam in chlorinated pools for greater than 100 hours and the odds of allergic rhinitis were increased 2.2- to 3.5-fold among those who logged more than 1000 hours of chlorinated pool time.

For example, among children and teens who swam in chlorinated pools for 100-500 lifetime hours, 22 children out of 369 (6.0%) had current asthma, compared with those who had spent less than 100 hours (2 of 144, 1.8%). The proportions with asthma rose with longer exposure, to 14 out of 221 (6.4%) who had been swimming for 500-1000 hours, and 17 out of 143 (11.9%) who swam for more than 1000 hours.

The risk of asthma and allergy was not influenced by swimming in copper-silver sanitized pools and children without allergic tendencies were not at increased risk of developing allergies.

"The only plausible explanation" for these observations, the researchers argue, is that the chlorine-based toxic chemicals in the water or hovering in the air at the pool surface cause changes in the airway and promote the development of allergic diseases.

"It is probably not by chance," Bernard told Reuters Health, "that countries with the highest prevalence of asthma and respiratory allergies are also those where swimming pools are the most popular."

The current findings, he and colleagues conclude, "reinforce" the need for further study on the issue and to enforce regulations concerning the levels of these chemicals in water and air of swimming pools.

SOURCE: Pediatrics, October 2009.

So interesting how all this environmental associations to illness are now being reported in mainstream media.

NY Times: Clean Water Laws Are Neglected, at a Cost to Health

2009-09-13T21:58:00.004-05:00

September 13th 2009

By CHARLES DUHIGG

Jennifer Hall-Massey knows not to drink the tap water in her home near Charleston, W.Va.

In fact, her entire family tries to avoid any contact with the water. Her youngest son has scabs on his arms, legs and chest where the bathwater — polluted with lead, nickel and other heavy metals — caused painful rashes. Many of his brother’s teeth were capped to replace enamel that was eaten away.

Neighbors apply special lotions after showering because their skin burns. Tests show that their tap water contains arsenic, barium, lead, manganese and other chemicals at concentrations federal regulators say could contribute to cancer and damage the kidneys and nervous system.

“How can we get digital cable and Internet in our homes, but not clean water?” said Mrs. Hall-Massey, a senior accountant at one of the state’s largest banks.

She and her husband, Charles, do not live in some remote corner of Appalachia. Charleston, the state capital, is less than 17 miles from her home.

“How is this still happening today?” she asked.

When Mrs. Hall-Massey and 264 neighbors sued nine nearby coal companies, accusing them of putting dangerous waste into local water supplies, their lawyer did not have to look far for evidence. As required by state law, some of the companies had disclosed in reports to regulators that they were pumping into the ground illegal concentrations of chemicals — the same pollutants that flowed from residents’ taps.

But state regulators never fined or punished those companies for breaking those pollution laws.

This pattern is not limited to West Virginia. Almost four decades ago, Congress passed the Clean Water Act to force polluters to disclose the toxins they dump into waterways and to give regulators the power to fine or jail offenders. States have passed pollution statutes of their own. But in recent years, violations of the Clean Water Act have risen steadily across the nation, an extensive review of water pollution records by The New York Times found.

In the last five years alone, chemical factories, manufacturing plants and other workplaces have violated water pollution laws more than half a million times. The violations range from failing to report emissions to dumping toxins at concentrations regulators say might contribute to cancer, birth defects and other illnesses.

However, the vast majority of those polluters have escaped punishment. State officials have repeatedly ignored obvious illegal dumping, and the Environmental Protection Agency, which can prosecute polluters when states fail to act, has often declined to intervene.

Because it is difficult to determine what causes diseases like cancer, it is impossible to know how many illnesses are the result of water pollution, or contaminants’ role in the health problems of specific individuals.

But concerns over these toxins are great enough that Congress and the E.P.A. regulate more than 100 pollutants through the Clean Water Act and strictly limit 91 chemicals or contaminants in tap water through the Safe Drinking Water Act.

Regulators themselves acknowledge lapses. The new E.P.A. administrator, Lisa P. Jackson, said in an interview that despite many successes since the Clean Water Act was passed in 1972, today the nation’s water does not meet public health goals, and enforcement of water pollution laws is unacceptably low. She added that strengthening water protections is among her top priorities. State regulators say they are doing their best with insufficient resources.

The Times obtained hundreds of thousands of water pollution records through Freedom of Information Act requests to every state and the E.P.A., and compiled a national database of water pollution violations that is more comprehensive than those maintained by states or the E.P.A. (For an interactive version, which can show violations in any community, visit www.nytimes.com/toxicwaters.)

In addition, The Times interviewed more than 250 state and federal regulators, water-system managers, environmental advocates and scientists.

That research shows that an estimated one in 10 Americans have been exposed to drinking water that contains dangerous chemicals or fails to meet a federal health benchmark in other ways.

Those exposures include carcinogens in the tap water of major American cities and unsafe chemicals in drinking-water wells. Wells, which are not typically regulated by the Safe Drinking Water Act, are more likely to contain contaminants than municipal water systems.

Because most of today’s water pollution has no scent or taste, many people who consume dangerous chemicals do not realize it, even after they become sick, researchers say.

But an estimated 19.5 million Americans fall ill each year from drinking water contaminated with parasites, bacteria or viruses, according to a study published last year in the scientific journal Reviews of Environmental Contamination and Toxicology. That figure does not include illnesses caused by other chemicals and toxins.

In the nation’s largest dairy states, like Wisconsin and California, farmers have sprayed liquefied animal feces onto fields, where it has seeped into wells, causing severe infections. Tap water in parts of the Farm Belt, including cities in Illinois, Kansas, Missouri and Indiana, has contained pesticides at concentrations that some scientists have linked to birth defects and fertility problems.

In parts of New York, Rhode Island, Ohio, California and other states where sewer systems cannot accommodate heavy rains, untreated human waste has flowed into rivers and washed onto beaches. Drinking water in parts of New Jersey, New York, Arizona and Massachusetts shows some of the highest concentrations of tetrachloroethylene, a dry cleaning solvent that has been linked to kidney damage and cancer. (Specific types of water pollution across the United States will be examined in future Times articles.)

The Times’s research also shows that last year, 40 percent of the nation’s community water systems violated the Safe Drinking Water Act at least once, according to an analysis of E.P.A. data. Those violations ranged from failing to maintain proper paperwork to allowing carcinogens into tap water. More than 23 million people received drinking water from municipal systems that violated a health-based standard.

In some cases, people got sick right away. In other situations, pollutants like chemicals, inorganic toxins and heavy metals can accumulate in the body for years or decades before they cause problems. Some of the most frequently detected contaminants have been linked to cancer, birth defects and neurological disorders.

Records analyzed by The Times indicate that the Clean Water Act has been violated more than 506,000 times since 2004, by more than 23,000 companies and other facilities, according to reports submitted by polluters themselves. Companies sometimes test what they are dumping only once a quarter, so the actual number of days when they broke the law is often far higher. And some companies illegally avoid reporting their emissions, say officials, so infractions go unrecorded.

Environmental groups say the number of Clean Water Act violations has increased significantly in the last decade. Comprehensive data go back only five years but show that the number of facilities violating the Clean Water Act grew more than 16 percent from 2004 to 2007, the most recent year with complete data.

Polluters include small companies, like gas stations, dry cleaners, shopping malls and the Friendly Acres Mobile Home Park in Laporte, Ind., which acknowledged to regulators that it had dumped human waste into a nearby river for three years.

They also include large operations, like chemical factories, power plants, sewage treatment centers and one of the biggest zinc smelters, the Horsehead Corporation of Pennsylvania, which has dumped illegal concentrations of copper, lead, zinc, chlorine and selenium into the Ohio River. Those chemicals can contribute to mental retardation and cancer.

Some violations are relatively minor. But about 60 percent of the polluters were deemed in “significant noncompliance” — meaning their violations were the most serious kind, like dumping cancer-causing chemicals or failing to measure or report when they pollute.

Finally, the Times’s research shows that fewer than 3 percent of Clean Water Act violations resulted in fines or other significant punishments by state officials. And the E.P.A. has often declined to prosecute polluters or force states to strengthen their enforcement by threatening to withhold federal money or take away powers the agency has delegated to state officials.

Neither Friendly Acres Mobile Home Park nor Horsehead, for instance, was fined for Clean Water Act violations in the last eight years. A representative of Friendly Acres declined to comment. Indiana officials say they are investigating the mobile home park. A representative of Horsehead said the company had taken steps to control pollution and was negotiating with regulators to clean up its emissions.

Numerous state and federal lawmakers said they were unaware that pollution was so widespread.

“I don’t think anyone realized how bad things have become,” said Representative James L. Oberstar, a Minnesota Democrat, when told of The Times’s findings. Mr. Oberstar is chairman of the House Transportation and Infrastructure Committee, which has jurisdiction over many water-quality issues.

“The E.P.A. and states have completely dropped the ball,” he said. “Without oversight and enforcement, companies will use our lakes and rivers as dumping grounds — and that’s exactly what is apparently going on.”

The E.P.A. administrator, Ms. Jackson, whose appointment was confirmed in January, said in an interview that she intended to strengthen enforcement of the Clean Water Act and pressure states to apply the law.

“I’ve been saying since Day One I want to work on these water issues pretty broadly across the country,” she said. On Friday, the E.P.A. said that it was reviewing dozens of coal-mining permits in West Virginia and three other states to make sure they would not violate the Clean Water Act.

After E.P.A. officials received detailed questions from The New York Times in June, Ms. Jackson sent a memo to her enforcement deputy noting that the E.P.A. is “falling short of this administration’s expectations for the effectiveness of our clean water enforcement programs. Data available to E.P.A. shows that, in many parts of the country, the level of significant noncompliance with permitting requirements is unacceptably high and the level of enforcement activity is unacceptably low.”

State officials, for their part, attribute rising pollution rates to increased workloads and dwindling resources. In 46 states, local regulators have primary responsibility for crucial aspects of the Clean Water Act. Though the number of regulated facilities has more than doubled in the last 10 years, many state enforcement budgets have remained essentially flat when adjusted for inflation. In New York, for example, the number of regulated polluters has almost doubled to 19,000 in the last decade, but the number of inspections each year has remained about the same.

But stretched resources are only part of the reason polluters escape punishment. The Times’s investigation shows that in West Virginia and other states, powerful industries have often successfully lobbied to undermine effective regulation.

State officials also argue that water pollution statistics include minor infractions, like failing to file reports, which do not pose risks to human health, and that records collected by The Times failed to examine informal enforcement methods, like sending warning letters.

“We work enormously hard inspecting our coal mines, analyzing water samples, notifying companies of violations when we detect them,” said Randy Huffman, head of West Virginia’s Department of Environmental Protection. “When I look at how far we’ve come in protecting the state’s waters since we took responsibility for the Clean Water Act, I think we have a lot to be proud of.”

But unchecked pollution remains a problem in many states. West Virginia offers a revealing example of why so many companies escape punishment.

One Community’s Plight

The mountains surrounding the home of Mrs. Hall-Massey’s family and West Virginia’s nearby capital have long been mined for coal. And for years, the area enjoyed clean well water.

But starting about a decade ago, awful smells began coming from local taps. The water was sometimes gray, cloudy and oily. Bathtubs and washers developed rust-colored rings that scrubbing could not remove. When Mrs. Hall-Massey’s husband installed industrial water filters, they quickly turned black. Tests showed that their water contained toxic amounts of lead, manganese, barium and other metals that can contribute to organ failure or developmental problems.

Around that time, nearby coal companies had begun pumping industrial waste into the ground.

Mining companies often wash their coal to remove impurities. The leftover liquid — a black fluid containing dissolved minerals and chemicals, known as sludge or slurry — is often disposed of in vast lagoons or through injection into abandoned mines. The liquid in those lagoons and shafts can flow through cracks in the earth into water supplies. Companies must regularly send samples of the injected liquid to labs, which provide reports that are forwarded to state regulators.

In the eight miles surrounding Mrs. Hall-Massey’s home, coal companies have injected more than 1.9 billion gallons of coal slurry and sludge into the ground since 2004, according to a review of thousands of state records. Millions more gallons have been dumped into lagoons.

These underground injections have contained chemicals at concentrations that pose serious health risks, and thousands of injections have violated state regulations and the Safe Drinking Water Act, according to reports sent to the state by companies themselves.

For instance, three coal companies — Loadout, Remington Coal and Pine Ridge, a subsidiary of Peabody Energy, one of the largest coal companies in the world — reported to state officials that 93 percent of the waste they injected near this community had illegal concentrations of chemicals including arsenic, lead, chromium, beryllium or nickel.

Sometimes those concentrations exceeded legal limits by as much as 1,000 percent. Those chemicals have been shown to contribute to cancer, organ failures and other diseases.

But those companies were never fined or punished for those illegal injections, according to state records. They were never even warned that their activities had been noticed.

Remington Coal declined to comment. A representative of Loadout’s parent said the company had assigned its permit to another company, which ceased injecting in 2006. Peabody Energy, which spun off Pine Ridge in 2007, said that some data sent to regulators was inaccurate and that the company’s actions reflected best industry practices.

West Virginia officials, when asked about these violations, said regulators had accidentally overlooked many pollution records the companies submitted until after the statute of limitations had passed, so no action was taken. They also said their studies indicated that those injections could not have affected drinking water in the area and that other injections also had no detectable effect.

State officials noted that they had cited more than 4,200 water pollution violations at mine sites around the state since 2000, as well as conducted thousands of investigations. The state has initiated research about how mining affects water quality. After receiving questions from The Times, officials announced a statewide moratorium on issuing injection permits and told some companies that regulators were investigating their injections.

“Many of the issues you are examining are several years old, and many have been addressed,” West Virginia officials wrote in a statement. The state’s pollution program “has had its share of issues,” regulators wrote. However, “it is important to note that if the close scrutiny given to our state had been given to others, it is likely that similar issues would have been found.”

More than 350 other companies and facilities in West Virginia have also violated the Clean Water Act in recent years, records show. Those infractions include releasing illegal concentrations of iron, manganese, aluminum and other chemicals into lakes and rivers.

As the water in Mrs. Hall-Massey’s community continued to worsen, residents began complaining of increased health problems. Gall bladder diseases, fertility problems, miscarriages and kidney and thyroid issues became common, according to interviews.

When Mrs. Hall-Massey’s family left on vacation, her sons’ rashes cleared up. When they returned, the rashes reappeared. Her dentist told her that chemicals appeared to be damaging her teeth and her son’s, she said. As the quality of her water worsened, Mrs. Hall-Massey’s once-healthy teeth needed many crowns. Her son brushed his teeth often, used a fluoride rinse twice a day and was not allowed to eat sweets. Even so, he continued getting cavities until the family stopped using tap water. By the time his younger brother’s teeth started coming in, the family was using bottled water to brush. He has not had dental problems.

Medical professionals in the area say residents show unusually high rates of health problems. A survey of more than 100 residents conducted by a nurse hired by Mrs. Hall-Massey’s lawyer indicated that as many as 30 percent of people in this area have had their gallbladders removed, and as many as half the residents have significant tooth enamel damage, chronic stomach problems and other illnesses. That research was confirmed through interviews with residents.

It is difficult to determine which companies, if any, are responsible for the contamination that made its way into tap water or to conclude which specific chemicals, if any, are responsible for particular health problems. Many coal companies say they did not pollute the area’s drinking water and chose injection sites that flowed away from nearby homes.

An independent study by a university researcher challenges some of those claims.

“I don’t know what else could be polluting these wells,” said Ben Stout, a biology professor at Wheeling Jesuit University who tested the water in this community and elsewhere in West Virginia. “The chemicals coming out of people’s taps are identical to the chemicals the coal companies are pumping into the ground.”

One night, Mrs. Hall-Massey’s 6-year-old son, Clay, asked to play in the tub. When he got out, his bright red rashes hurt so much he could not fall asleep. Soon, Mrs. Hall-Massey began complaining to state officials. They told her they did not know why her water was bad, she recalls, but doubted coal companies had done anything wrong. The family put their house on the market, but because of the water, buyers were not interested.

In December, Mrs. Hall-Massey and neighbors sued in county court, seeking compensation. That suit is pending. To resolve a related lawsuit filed about the same time, the community today gets regular deliveries of clean drinking water, stored in coolers or large blue barrels outside most homes. Construction began in August on a pipeline bringing fresh water to the community.

But for now most residents still use polluted water to bathe, shower and wash dishes.

“A parent’s only real job is to protect our children,” Mrs. Hall-Massey said. “But where was the government when we needed them to protect us from this stuff?”

Regulators ‘Overwhelmed’

Matthew Crum, a 43-year-old lawyer, wanted to protect people like Mrs. Hall-Massey. That is why he joined West Virginia’s environmental protection agency in 2001, when it became clear that the state’s and nation’s streams and rivers were becoming more polluted.

But he said he quickly learned that good intentions could not compete with intimidating politicians and a fearful bureaucracy.

Mr. Crum grew up during a golden age of environmental activism. He was in elementary school when Congress passed the Clean Water Act of 1972 in response to environmental disasters, including a fire on the polluted Cuyahoga River in Cleveland. The act’s goal was to eliminate most water pollution by 1985 and prohibit the “discharge of toxic pollutants in toxic amounts.”

“There were a bunch of us that were raised with the example of the Clean Water Act as inspiration,” he said. “I wanted to be part of that fight.”

In the two decades after the act’s passage, the nation’s waters grew much healthier. The Cuyahoga River, West Virginia’s Kanawha River and hundreds of other beaches, streams and ponds were revitalized.

But in the late 1990s, some states’ enforcement of pollution laws began tapering off, according to regulators and environmentalists. Soon the E.P.A. started reporting that the nation’s rivers, lakes and estuaries were becoming dirtier again. Mr. Crum, after a stint in Washington with the Justice Department and the birth of his first child, joined West Virginia’s Department of Environmental Protection, where new leadership was committed to revitalizing the Clean Water Act.

He said his idealism was tested within two weeks, when he was called to a huge coal spill into a stream.

“I met our inspector at the spill site, and we had this really awkward conversation,” Mr. Crum recalled. “I said we should shut down the mine until everything was cleaned up. The inspector agreed, but he said if he issued that order, he was scared of getting demoted or transferred to the middle of nowhere. Everyone was terrified of doing their job.”

Mr. Crum temporarily shut the mine.

In the next two years, he shut many polluting mines until they changed their ways. His tough approach raised his profile around the state.

Mining companies, worried about attracting Mr. Crum’s attention, began improving their waste disposal practices, executives from that period said. But they also began complaining to their friends in the state’s legislature, they recalled in interviews, and started a whisper campaign accusing Mr. Crum of vendettas against particular companies — though those same executives now admit they had no evidence for those claims.

In 2003, a new director, Stephanie Timmermeyer, was nominated to run the Department of Environmental Protection. One of West Virginia’s most powerful state lawmakers, Eustace Frederick, said she would be confirmed, but only if she agreed to fire Mr. Crum, according to several people who said they witnessed the conversation.

She was given the job and soon summoned Mr. Crum to her office. He was dismissed two weeks after his second child’s birth.

Ms. Timmermeyer, who resigned in 2008, did not return calls. Mr. Frederick died last year.

Since then, hundreds of workplaces in West Virginia have violated pollution laws without paying fines. A half-dozen current and former employees, in interviews, said their enforcement efforts had been undermined by bureaucratic disorganization, a departmental preference to let polluters escape punishment if they promise to try harder, and a revolving door of regulators who leave for higher-paying jobs at the companies they once policed.

“We are outmanned and overwhelmed, and that’s exactly how industry wants us,” said one employee who requested anonymity for fear of being fired. “It’s been obvious for decades that we’re not on top of things, and coal companies have earned billions relying on that.”

In June, four environmental groups petitioned the E.P.A. to take over much of West Virginia’s handling of the Clean Water Act, citing a “nearly complete breakdown” in the state. The E.P.A. has asked state officials to respond and said it is investigating the petition.

Similar problems exist in other states, where critics say regulators have often turned a blind eye to polluters. Regulators in five other states, in interviews, said they had been pressured by industry-friendly politicians to drop continuing pollution investigations.

“Unless the E.P.A. is pushing state regulators, a culture of transgression and apathy sets in,” said William K. Reilly, who led the E.P.A. under President George H. W. Bush.

In response, many state officials defend their efforts. A spokeswoman for West Virginia’s Department of Environmental Protection, for instance, said that between 2006 and 2008, the number of cease-operation orders issued by regulators was 10 percent higher than during Mr. Crum’s two-year tenure.

Mr. Huffman, the department’s head, said there is no political interference with current investigations. Department officials say they continue to improve the agency’s procedures, and note that regulators have assessed $14.7 million in state fines against more than 70 mining companies since 2006.

However, that is about equal to the revenue those businesses’ parent companies collect every 10 hours, according to financial reports. (To find out about every state’s enforcement record and read comments from regulators, visit www.nytimes.com/waterdata.)

“The real test is, is our water clean?” said Mr. Huffman. “When the Clean Water Act was passed, this river that flows through our capital was very dirty. Thirty years later, it’s much cleaner because we’ve chosen priorities carefully.”

Some regulators admit that polluters have fallen through the cracks. To genuinely improve enforcement, they say, the E.P.A. needs to lead.

“If you don’t have vigorous oversight by the feds, then everything just goes limp,” said Mr. Crum. “Regulators can’t afford to have some backbone unless they know Washington or the governor’s office will back them up.”

It took Mr. Crum a while to recover from his firing. He moved to Virginia to work at the Nature Conservancy, an environmental conservation group. Today, he is in private practice and works on the occasional environmental lawsuit.

“We’re moving backwards,” he said, “and it’s heartbreaking.”

Shortcomings of the E.P.A.

The memos are marked “DO NOT DISTRIBUTE.”

They were written this year by E.P.A. staff, the culmination of a five-year investigation of states’ enforcement of federal pollution laws. And in bland, bureaucratic terms, they describe a regulatory system — at the E.P.A. and among state agencies — that in many ways simply does not work.

For years, according to one memo, federal regulators knew that more than 30 states had major problems documenting which companies were violating pollution laws. Another notes that states’ “personnel lack direction, ability or training” to levy fines large enough to deter polluters.

But often, the memos say, the E.P.A. never corrected those problems even though they were widely acknowledged. The E.P.A. “may hesitate to push the states” out of “fear of risking their relationships,” one report reads. Another notes that E.P.A. offices lack “a consistent national oversight strategy.”

Some of those memos, part of an effort known as the State Review Framework, were obtained from agency employees who asked for anonymity, and others through Freedom of Information Act requests.

Enforcement lapses were particularly bad under the administration of President George W. Bush, employees say. “For the last eight years, my hands have been tied,” said one E.P.A. official who requested anonymity for fear of retribution. “We were told to take our clean water and clean air cases, put them in a box, and lock it shut. Everyone knew polluters were getting away with murder. But these polluters are some of the biggest campaign contributors in town, so no one really cared if they were dumping poisons into streams.”

The E.P.A. administrators during the last eight years — Christine Todd Whitman, Michael O. Leavitt and Stephen L. Johnson — all declined to comment.

When President Obama chose Ms. Jackson to head the E.P.A., many environmentalists and agency employees were encouraged. During his campaign, Mr. Obama promised to “reinvigorate the drinking water standards that have been weakened under the Bush administration and update them to address new threats.” He pledged to regulate water pollution from livestock operations and push for amendments to the Clean Water Act.

But some worry those promises will not be kept. Water issues have taken a back seat to other environmental concerns, like carbon emissions.

In an interview, Ms. Jackson noted that many of the nation’s waters were healthier today than when the Clean Water Act was passed and said she intended to enforce the law more vigorously. After receiving detailed questions from The Times, she put many of the State Review Framework documents on the agency’s Web site, and ordered more disclosure of the agency’s handling of water issues, increased enforcement and revamped technology so that facilities’ environmental records are more accessible.

“Do critics have a good and valid point when they say improvements need to be made? Absolutely,” Ms. Jackson said. “But I think we need to be careful not to do that by scaring the bejesus out of people into thinking that, boy, are things horrible. What it requires is attention, and I’m going to give it that attention.”

In statements, E.P.A. officials noted that from 2006 to 2008, the agency conducted 11,000 Clean Water Act and 21,000 Safe Drinking Water Act inspections, and referred 146 cases to the Department of Justice. During the 2007 to 2008 period, officials wrote, 92 percent of the population served by community water systems received water that had no reported health-based violations.

The Times’s reporting, the statements added, “does not distinguish between significant violations and minor violations,” and “as a result, the conclusions may present an unduly alarming picture.” They wrote that “much of the country’s water quality problems are caused by discharges from nonpoint sources of pollution, such as agricultural runoff, which cannot be corrected solely through enforcement.”

Ultimately, lawmakers and environmental activists say, the best solution is for Congress to hold the E.P.A. and states accountable for their failures.

The Clean Water Act, they add, should be expanded to police other types of pollution — like farm and livestock runoff — that are largely unregulated. And they say Congress should give state agencies more resources, in the same way that federal dollars helped overhaul the nation’s sewage systems in the 1970s.

Some say changes will not occur without public outrage.

“When we started regulating water pollution in the 1970s, there was a huge public outcry because you could see raw sewage flowing into the rivers,” said William D. Ruckelshaus, who served as the first head of the Environmental Protection Agency under President Richard M. Nixon, and then again under President Ronald Reagan.

“Today the violations are much more subtle — pesticides and chemicals you can’t see or smell that are even more dangerous,” he added. “And so a lot of the public pressure on regulatory agencies has ebbed away.”

Karl Russell contributed reporting.

I know that toxic water was one of the environmental factors that contributed to my children's health issues. I still remember SMELLING the tap water as it poured into a drinking glass as a child. Bottoms up! My daily dose of poison - undetected to me and paid for in my children.
The house we just moved from had well water. What most people don't understand is that the water pumped up from a well doesn't neatly come from directly underneath your house. It can come from miles away as water tables work. Even water people don't really know and it can be unpredictable. Our new apartment has city tap water that wreaks of chlorine. We now use the astronomically expensive swimmer's shampoo and conditioner to ward off the crispiness we feel when we feel our long hair. When I get a sec I am going to order some of those filters that remove chlorine and the other stuff once I get it analyzed. We have Brita as a temporary fix.
Never a dull moment.
It's all about money AS ALWAYS. Priorities, where will we SPEND money on babysitters? So many corporations to sit. Demand exceeds supply as always. So many conflicts of interest. It also makes you wonder WHY this is big news now, as it's been the situation for ages. What will become of this information? Where is this heading?
And our generation of children are paying for it.

Living With Choices

2009-09-10T11:39:00.005-05:00

This is my first post since our move. My family and I moved out of Lymeland across the country to the beautiful Pacific North West. No matter how you slice it, moving is hard even when things go as planned don't you think? My husband lost his job over the winter, so we decided it was a good time to look for jobs out of Lymeland. Fortunately, we were able to do it, and got out.

We are still adjusting to our radically different lifestyle - from living on 3 acres in the middle of the woods in a small town to a city apartment up 2 flights of stairs. I am having college flashbacks that's for sure! We hope to sell our house back east soon, and then we'll see where we stand. It gives me perspective to live like so many people do all of their lives with kids and dogs, in a much smaller living space. We really had it good living in a house where I could just open the door to let the dogs outside, the kids could come and go as they please. Now I abide by the poop schedule along with the school schedule.

As we drove away from our house for the last time it felt right. Not that I wasn't crying a bit, we all were, but it was grief just as grief is, nothing else like regret, uncertainty.

Although our lives are all harder for the time being, I am relieved that my kids are out of a Lyme endemic area. I had to face the music - my kids are SICK. My kids have weak immune systems, and will probably be this way for the rest of their lives. I have a hard time accepting this fact, something I work on each day.

A practical decision. Getting Sydney better is one thing, but then once she is "better", keeping her in the same place like a sitting duck was just too much for me. And for Leo too - he has shown positive results to some of the Lyme coinfections, but is basically asymptomatic at this point. He had the facial tics, but they are gone for the time being, and maintain him through Rifing, homeopathy, and an anti-Lyme herbal regiment. While I am ecstatic to get to the root of the tics, I have to keep up with the program to keep him healthy. A delicate balancing act - us moms all seem to have one.

Both kids continue to have naturally low Ig levels which is part of the issue with them keeping bacteria under control - strep, lyme, the coinfections like Mycoplasma, Babesia, and Bartonella. They are high with strep every time we test! The facial tics seem to be my barometer to illness for them. I'd prefer something else, but at least I finally know and the guessing game begins.

Some good news - Sydney had a major jump in improvement over the summer, counter to what I predicted happening with the toll and stress of moving. We continue to have her on 4 antibiotics along with homeopathy for support. We are SO RELIEVED.

As the ILADS doctors say (they are the DAN of Lyme docs), "There is no cure of these diseases. Antibiotics work to cut the population down to a point where the immune system can take over. This is where herbs and homeopathy come in for support." So that is what happened - we did a trial on herbs and that appears to take the credit for some of her chronic pain disappearing. For instance, her sore throat that she had for 10 months is now gone, courtesy of a modified Cowden protocol.

The kids are adjusting nicely to their new school. It is hard though, especially for Leo as a 5th grader. All these kids that have known each other forever. His new friend Kevin that he met over the summer hasn't played with him yet at recess. He is nice to him and says hi, but that's it for now. I know it hurts Leo, but he doesn't admit it. He keeps reaching out, playing with different kids in the "jock" group so far this week. For Sydney, it's so much easier as anyone with a girl knows. And she is younger, in 3rd grade.

I am hoping that what we'd done with Leo will not crumble putting him in a completely new setting on all levels. A temporary home, a new school, all new people. It was really the only truly hard thing to leave behind - knowing our old team was just minutes away if we needed them for an intervention or for tutoring . We had to weigh in on the cost/benefits - we now had to make a decision that had Sydney more in mind than Leo.

It's been heartbreaking seeing him miss his old BFF. They are very cute on the phone and on video chat. Validating on how deep of a friendship he can have. He was SO sad, and still is. I am sure it just takes time. I felt bad for his BFF too, his parents tell me he is having a hard time. A little displaced at recess, just walks around alone sometimes, not sure what to do. They were inseparable for 2 years. It's been great talking to Leo about friendships, and to teach him about long distance ones, and how you need to adjust for phone conversations. It's been a learning experience for us all. He wrote a lot of letters and emails, which seemed to inspire him and make him feel good.

Who knows where we'll end up or how the school year will end. My hope is that Leo will have a couple good friends to go to middle school with next year. I am anxiously awaiting his standardized testing scores from the spring - hopefully they'll be validating or be telling on what we need to work on. As his old clinical supervisor says "The testing is like a test for ASD. All it does is test for inferences." I know this isn't his strong suit, but hope he tests in the normal range like he did last year.

The husband is tolling away, his new job is great but overwhelming and beyond busy. It will be like this until next year. We also have one car, so public transportation is beginning to take a toll too.

For me, I am still doing the settling in errands and chores. On major medical duty - getting doctors set up, etc. I am a bit isolated in the apt, not in a neighborhood street yet making friends. But, I've met some really nice parents so far, just don't have that consistency yet. Time will tell.

Moving Criteria List

2009-07-20T08:47:00.003-05:00

We are in the middle of moving. Away from Lymeland. Does my school criteria list look normal to you? Is it normal that I spoke with 3 people that work for the department of Health and Safety for the city, not to mention several private health organizations/groups?

Academics Checklist

Teaching style

Teacher/student ratio

Specials

Facility look and feel, open space

Feeder schools

Standardized testing scores

Curriculum

Safetly/neighborhood surrounding school

Hmmm..., okay, this looks normal. But what about this?

Health Checklist

Nurse, how many days per week on site?

Radon

Asbestos

New construction - was it formaldehyde-soaked? Fiber glass exposure?

Existing buildings - are the up to current code?

Air filters, percentage of new vs. circulated air

Paint

Playground materials

Pesticides used, application schedule

Cleaning products used

Carpets - last cleaned, by what

Cafeteria choices

Proximity to cell phone towers and exposed powerlines

Water source and quality - common contaminants

Electrical system - age and condition

Lighting - what type and location throughout school

Certainly not what my neighbor looked at when she chose a school. Did I know or even CARE about this kind of stuff before I had kids? Or even pre-diagnosis? Not really.

Reflections on Health, Autism as an Illness

2009-07-14T19:14:00.029-05:00

I was asked recently about Leo and the possible causative factors that contributed to his Autism. It got me thinking. How has my recent experience with Leo's younger sister Sydney's chronic illnesses changed what I know about Leo? Sydney has chronic Lyme, Bartonella, and Babesia, and carries an "out of range" high load of Strep. She, like Leo, has atypical responses to disease such as facial tics and fatigue. Many of her symptoms, like Leo, are very subtle. An outbreak of 5ths disease or a flu sends most kids home with high fevers and other traditional symptoms. Not my kids. They come home blinking their eyes like a pinball machine with no other symptoms.

Sydney and Leo both have "out of range" low levels of Immunoglobulins. They cannot normally detox and have GI and immune deficits commonly seen with ASD children. Sydney's slow and challenging healing response to her Lyme is indicative of this, as is what improves her symptoms (supplements/homeopathy that address these deficits).

My daughter's illness has indeed added Lyme to the list of potential causative factors. Did Leo always have an undercurrent of Lyme and other bacteria like Strep that caused his symptoms from day 1? Did I, Leo's mom, contract Lyme as a college student? Were my chronic fatigue and "colds" Lyme all along? I jogged on hiking trails in the Santa Monica Mountains for years. Leo has always been a "bacteria kid". His high load of strep, and the recently diagnosed Mycoplasma Fermentans keeps us on our toes with our protocol.

As we all know there are so many parking spots on the Autism Spectrum. My family is no different, a blend of genes, GI/Immune deficits, and numerous environmental factors. My father and his brothers all suffered from social problems. Mental health red flags on my mother's side too along with your garden variety alcoholism for self-medication. I always estimated Leo to be 80% environmental and 20% genes.

Leo needed and received both therapeutic and biomedical intervention to maximize his potential. Chicken or the egg? Did Leo need ABA to catch up to what our biomedical protocol was addressing? Or were his social deficits "stand-alone" problems that were addressed and ultimately overcome by ABA-NET? Or a blend of both?

Leo still needs his bio protocol to keep him "normal", whatever that is. He continues to have visual/spacial deficits, that for now don't affect his life but could in the future, especially with geometry or other academic challenges. We'll never know and really what matters is that my son GOT what he needed - we filled in the missing pieces and rewired his brain on both therapeutic and biomedical levels. My hope is that every child on the spectrum gets what they need, an individualized program of therapeutic and biomedical intervention designed for their blend of ASD. My motivation for posting.

As I sit at the tip of the swine vax windup for the fall, I am despondent over the state of our kids. 10 years into this, we still seem to be rudderless as a society, reactive to things and not looking at the causative factors. Here is a list of what I can, at best, estimate as ours:

Maternal Causative Factors

1) HSV1 - I have "cold sores" since my college years - saw my daughter at 3yrs old on a sunny vacation get a herpes spot on her chin. Although it was barely noticeable and passed for a tiny bit of "ezema", I could see that's what it was.

2) Leo's grandparents had sexually transmitted diseases. I believe but don't have proof that both my parents as certified 70s "swingers" contracted Gonorrhea and/or Syphilis. I feel they did so because how could they have been spared (1), and (2) I have responded beautifully to homeopathic remedies made from these diseases called Nosodes in aiding my own chronic health problems. Traditional science now admits that disease can be passed on to children (see article on Roseola).

3) Processed foods diet. T.V. dinners and McDonalds were our staples.

4) Toxic water. From elementary through most of high school I grew up in a San Joaquin County town where tap water always had "flakes", tiny white flaky floaty things. When I asked what they were (at 13 years old) if they were okay, people always blew me off, shrugging their shoulders saying it was probably okay, not going to kill me. My light blonde hair always had a "chlorine" look to it, when I didn't swim.

5) High exposure to pesticides. The San Joaquin Valley was and still is a major agricultural area. I routinely saw and smelled pesticides being sprayed regularly.

6) Strep-B positive when Leo was born, and was put on a round of antibiotics when I went into labor.

7) Los Angeles fish diet - for years I ate only seafood.

8) Computers and bad air quality in giant corporate building where I worked for years.

9) Antibiotics abuse. During my college years I became chronically ill with somewhat benign illnesses - little colds here and there and fatigue, seasonal allergies.

10) Urban lifestyle

Paternal Causative Factors

1) Urban lifestyle, raised in NYC

2) Raised on bagels and pizza.

3) Leo's dad had chronic asthma and environmental allergies from day 1.

4) Leo's father's extended family show spectrumy signs.

5) Alcoholism and chronic illness with paternal grandparents

6) Antibiotics and other chronic prescription abuse.

7) Leo's father lived and worked in traditional corporate environment - lots of computers and bad air quality.

Something noteworthy, both me and my husband have dramatically responded in a positive way to alternative medicine and eating whole/organic foods. We are much healthier than we've ever been, although we continue to have chronic issues.

Interesting list, and I am sure not at all uncommon.

The Doctor's Office

2009-06-10T18:41:00.003-05:00

Call me crazy but I actually went to the doctor for ME today. As I handed over a fresh 20 to the receptionist, I listen in on 2 pharmaceutical reps pumping each other for information in the waiting room. Irony. I fantasized handing THEM my $20 co-pay instead. Then I scream at them in a Michael Moore fashion how they are ruining our kids. Then walk out. That was a nice 30 seconds.

CT Behavior Therapy Bill Passes the Senate

2009-06-09T23:12:00.004-05:00

Waiting on the governor to sign this bill and the HB 6200 Lyme bill. This is amazing news! Pretty surreal to think that insurance would finally cover it. Maybe the world isn't as insane as I think it is. My two worlds have collided - what an interesting time. On her desk the fate of my past and the fate of our future.

Autism Speaks last night joined Connecticut families and other autism advocacy organizations in applauding the members of the State legislature for passing Senate Bill 301, which requires insurance companies to provide coverage of evidence-based, medically necessary autism therapies. The bill was passed late last night in a vote of 140 to 2 and now heads to Governor M. Jodi Rell’s desk for signature into law.

The Connecticut bill requires insurers to provide coverage for behavioral therapy up to a yearly benefit of $50,000 for a child who is less than nine years of age and $35,000 for a child who is at least nine years of age and less than thirteen years of age. The bill specifically covers Applied Behavior Analysis (ABA) therapy, which is recognized as an effective, evidence-based treatment for children with autism. SB 301 was sponsored by State Senate Majority Leader Martin M. Looney (D-11) and Speaker of the House Christopher G. Donovan (D-84).

We specifically want to thank Senator Joe Crisco, Senato r Jonathan Harris, Senator John McKinney, Senator Len Fasano, Representative Lawrence Cafero, Representative Themis Klarides for their herculean efforts on behalf of this bill and all those touched by autism. We ask each of you if you have a moment to thank these members. To learn more about this historic bill passing and how to contact local representatives visit www.autismvotes.org.

End Of School Year...Almost

2009-06-07T17:20:00.004-05:00

It seems forever since I've posted anything. Leo can't wait for school to be over! Things are status quo, really even keel and life is good for my sweet boy. True, nothing is perfect, and for him his parents are pretty taken up by his sister's Lyme disease. But all in all, things are great.

Leo's friendships are even deeper and more meaningful with the same boys he's known for years in elementary school. They talk a lot about nothing, kind of like Seinfeld. It's really cute and so grown up. He had a sleepover recently, and for the first time I could tell he didn't share everything that went on, especially their talks before bed. I see that the world sees my baby boy differently as well. Other Dads will see Leo and say "Hey what's up." The restaraunt hostess won't give him a kids menu.

He's had a great baseball year in AAA. He is known to pitch well and is now a strong batter.The games seem a little bit more exciting than last year. His coaches are amazed how he can keep his composure, even when they've switched pitchers, bringing him in to "close" an inning if the bases are loaded. Must be that linear mind of his.

I still don't have the stomach for sports because I still remember how much harder everything has been for him and how far he has come. I worry when something big changes, or if it rains or if the field changes how Leo will handle it. So far so good. He has turned out to be very confident and upbeat as a player. He is known to rile up his teammates, getting them clapping and cheering when they are in a slump. Emerging leadership qualities (both his teacher and his coaches have said this more than once).

Leo is amazingly even keel throughout a garden variety day. No peaks and valleys as in the past. Ideally, "quiet time" as a break in the afternoon (on weekends) and regular snack breaks would be nice, but we are no longer owned by them. Maybe not as even throughout the day as the next kid, but very close. I am sure my kids still go to bed earlier than most (8:30pm??) because they'd certainly fall apart if we regularly kept them up after that. He can go without a break all day and stay up late and even eat late with no consequence.

We continue to be strict with food at home (GF, organic, whole foods) and with lunches, but when we are at parties, sleepovers, field trips, or at friends houses I let him partake and make his own choices. He is very compliant with his supplements so I honor his good care of himself with this. And his body can handle it which continues to amaze me. The only difference I insist upon is having a snack during a field trip - going from 8am to 1 or 1:30 with no food is just idiotic.

We determined finally through testing that another bacteria, Mycoplasma Fermentans is a causative factor to Leo's minor tics that wax and wane along with the Strep we've been addressing. This knowledge has made a big difference since we are able to target this bacteria through Rifing. I am sure Lyme is in there somewhere, but for now it as a manageable level. Perhaps we caught it early enough through Rifing. I continue to use blended homeopathy and nutrition support for detox and die-off from Rifing. A night and day difference from the winter where they got so bad.

Leo has also been a trouper when it comes to all the attention Sydney has required this past year. It hasn't been easy for him. He has an almost adult-like understanding of the big picture of chronic illness and has empathy for us and for Sydney. He could easily be the kid that you could ignore and he'd plug along doing the "right thing", his chores, his homework, etc. I appreciate his steady character and maturity in handling his irritable, emotional, and sensitive younger sister. So, I try to make an effort to spend special time with him, which doesn't always work out as the pill-pusher chief medical officer of Sydney. One day I'll make it up for him.

Globally Sydney is better but has a long way back to recovery. I can only hope that she can get there. Applying what I've learned from the Autism battlefield has helped exponentially that's for sure.

My DH is still out of work. We are hopeful that he will find employment back on the west coast away from endemic Lyme areas. I welcome bad air, bad water, and a higher cost of living with open arms. I say bring it! (Sure that may be dated slang but I just love it).

As for me, I am all about Lyme. Lyme Lyme Lyme. So many kids are not diagnosed and undertreated. Yet another category of illness that makes up the now typical fabric of the American classroom.

For "fun", a fellow Lyme mom and I took out the class directory and counted how many "regular" kids there were in 4th grade. Between the 2 of us, we knew every kid. I have a boy and she has a girl in this grade, so we really had it covered. There are about 108 kids - an average of 5 per class of 22 had no health or learning issue. I mean asthma, allergies, learning disability, ADD, ASD, OCD, diabetes, obesity, Lyme Disease, P.A.N.D.A.S. like disorder, Psychiatric disorder, Behavioral disorder, or some other IEP related issue.

Just 5. FIVE KIDS on average that had no problems. The next day I stared at this very group during the Spring Recital. There they all were, all lined up on stage singing. I started to tear up but not for the reasons most people would think. A picture of health? No, a scary, devastating picture of the future.

Thank You!

2009-05-23T17:22:00.002-05:00

Thank you for your payment. Your transaction has been completed. You may log into your account at www.paypal.com/us to view details of this transaction.

Feel free to contact me directly at Busterfoofoo@gmail.com

Return to book page.

Swine Flu

2009-04-29T14:49:00.003-05:00

Here is some good info about this bird/pig/human combo from the leaders in the homeopathy world. One of the links goes to a great flu remedy page from HPathy.com.

Jim Carrey's Response to Campbell Brown

2009-04-24T18:25:00.005-05:00

Here's the Huffington Post's article. I just love this guy! I recall going insane when I innocently watched Campbell's opinion live. For a smart chick, boy is her take idiotic. Must be hormones. Here I was trying to relax after a long day and woah did it do the opposite!

Recovery Video Piece from NBC

2009-04-24T18:22:00.003-05:00

Leo is 10 1/2. So cool to see another little guy(well, big guy now) ahead of us in living color.Jake is now 13 and continues to inspire so many of us. Thanks for sacrificing your privacy and becoming a celebrity for all of us. Thanks to NBC for all that you continue to do.

From Another Mom Like Me

2009-04-11T12:27:00.003-05:00

In response to my post the other day about being a special mom...This mom says...

"Hi. I just read your blog. I get it....I want to be regular too.

I want to eat a hamburger made in a plant with downed cows, eat a chicken that has been pumped up with hormones and left in a warehouse for 4 months to smell it's own urine and drink milk that is pumped up with HGH. I want to let my son roll down a bright green grass hill full of pesticides and not worry about it. I want to let him run his hands along the playground equipment that is full of pollen and then touch his face and not worry about the welts that will take over his body. I want to eat hot dogs that have nitrates and eat candy loaded with chemicals...but I can't go back now."

BOTANICAL	POSSIBLE BENEFIT	POSSIBLE RISKS
Black cohosh	Prevention of hot flashes and other menopause symptoms, may help improve bone density.	No long-term safety data on breast tissue; may cause liver damage.
Soy(phytoestrogens)	May lower risk of LDL ('bad') cholesterol; reduce hot flashes and other menopause symptoms.	Possible role in development of breast, uterine cancers.
Milk thistle	May promote growth of liver cells, improve symptoms of liver disease; possible treatment for hepatitis C.	May lower blood-sugar levels in diabetics; allergic reactions, gastrointestinal side effects.
Ginseng	May lower blood sugar, boost immunity, increase stamina.	Headaches; allergic reactions; sleep and gastrointestinal problems.
Elderberry	Anti-oxidant, may lower cholesterol, boost immune system, improve heart health.	Diuretic effects; no scientific data on benefits.
Cranberry (extracts, tablet, capsules )	May prevent urinary tract disorders, stomach ulcers, dental plaque; anti-cancer benefits.	Could cause GI upset; may interact with blood-thinning drugs.
Evening primrose	Modest benefits for eczema; may be useful for rheumatoid arthritis and breast pain.	May cause gastrointestinal upset, headache.
St. John's wort	May help treat mild depression.	May limit effectiveness of prescription medications; unproven as treatment for major depression.

Hidden Recovery Environment Blog

Dr. Marra, Our Lyme Doc

Autism's Puzzle: Decoding An Epidemic

Autoimmunity: autism, pandas, vaccines

HFA: Advice From A Mom, From Diagnosis To Recovery Book

My New Book Coming Soon

Telling Leo About his Autism Label

Rage and Chronic Infections

Getting Shingles More Than Once

Painful Shingles Can Strike More Than Once

By MELINDA BECK

Shingles 101

9 Questions for Pro-Vaccine Advocates and Their Claims

My Favorite Snack Mix

Finally! Government Looking Into Fluoride

Babycakes, My New Favorite GFCF Cookbook

Autism Recovery Study

Recovery from Autism

By: Colin Poitras, University of Connecticut 9/13/10

Gadolinium, The Metal Dye They Use For MRIs

Our Bigtime Middle Schooler

The First Autism Child

NY Times: Genetically Engineered Salmon

F.D.A. Hearing Focuses on the Labeling of Genetically Engineered Salmon

By ANDREW POLLACK

MORE IN BUSINESS DAY (1 OF 19 ARTICLES)

Oracle Growth Plans Worry Rivals and Customers

WSJ: Herbal Supplements Face New Scrutiny

Usage of botanicals is growing.

The Powers of Garlic

Petal Power?

Father of ABA, Dr. Lovaas, Passes

Saving Sammy

NY Times: Childhood Combo. Vax and Seizure Risk

Childhood: Combination Vaccine and Seizure Risk

By Roni Caryn Rabin

MORE IN RESEARCH (6 OF 24 ARTICLES)

Heart Risks Seen in Diabetes Medicine

FDA Urging Limited Antibiotics In Meat

FDA urging meat producers to limit antibiotics given to animals

Can Strep Throat Lead to Behavior Problems?

MARCH 19, 2010, 12:31 PM New york times

Can Strep Throat Lead to Behavior Problems?

Guidelines for Choosing a BCBA

DSM-5 Update

Jim and Jenny Explain the Politics Behind the Lancet's Decision

Autism Rise in Los Angeles

Kettleman City, CA and Birth Defects

Rifelabs.com Dave Nelson passes away

So Much Newness!

Kid's Jewelry

Age of Autism Blog

Things I'm Grateful For

Nutrition Facts for a Banana

New Autism Numbers

Hepatitis B Vaccine Triples the Risk of Autism in Infant Boys

NY Times: Childhood: Autism Diagnoses Rising, U.S. Reports

For P.A.N.D.A.S. Parents

Strep link to OCD in Mice

Antibodies to strep throat bacteria linked to obsessive compulsive disorder in mice

Behavior Analysts, Inc and their Fall Training Series

Leo's Standardized Testing Scores from 4th Grade

Is swimming pool chlorine fueling the allergy epidemic?

NY Times: Clean Water Laws Are Neglected, at a Cost to Health

Living With Choices

Moving Criteria List

Reflections on Health, Autism as an Illness

The Doctor's Office

CT Behavior Therapy Bill Passes the Senate

End Of School Year...Almost

Thank You!

Swine Flu

Jim Carrey's Response to Campbell Brown

Recovery Video Piece from NBC

From Another Mom Like Me