Sunday, December 21, 2008

Out of Control Drug Companies: NY Times article

December 20, 2008
Medical Publisher to Review Claim About Article’s Writer

Elsevier, a medical publisher, said Friday that it would investigate a senator’s recent allegation that one of its journals published an article on hormone replacement therapy that was improperly ghostwritten by a drug company promoting the product.

Senator Charles E. Grassley, Republican of Iowa, had raised questions about the May 2003 “Editors’ Choice” article in Elsevier’s American Journal of Obstetrics and Gynecology. The article, signed by Dr. John Eden, an Australia academic, was among articles Mr. Grassley has cited that were favorable to drugs made by the pharmaceutical company Wyeth.

Mr. Grassley, a member of the Senate Finance Committee who is investigating drug company influence on doctors, contends that Wyeth commissioned the articles and had them ghostwritten by a medical writing firm. Only after the articles were conceived and under way did the firm line up doctors to put their names on them, Mr. Grassley contends.

“The charges made by Senator Grassley’s office with regard to the article published in 2003 by Dr. Eden are a significant concern to The Journal and Elsevier,” Glen P. Campbell, the senior vice president for Elsevier’s US Health Sciences Journals unit, said in a statement. “As with any charge of misconduct or inappropriate publishing acts, The Journal has launched its own investigation into the claims of ghostwriting and undisclosed financial support.”

The journal article, published more than a year after a landmark federal study linked Wyeth’s Prempro hormone product to breast cancer in women, said there was “no definitive evidence” the hormones caused breast cancer.

Mr. Eden’s article did not mention any involvement by Wyeth or DesignWrite, the medical writing company hired by Wyeth. He acknowledged the contributions of two people for “editorial assistance” but did not disclose they worked for DesignWrite. The standard industry guidelines for medical journals require the authors to identify all significant contributors.

In an e-mail message to The New York Times last week, Mr. Eden said he stood by the article’s contents but declined to elaborate. “I cannot comment as these matters are before the Senate,” he said in the message. “I am also aware of ongoing lawsuits around these matters.” Mr. Eden is an associate professor at the University of New South Wales.

In a statement Friday, Wyeth said the academic authors were not paid by Wyeth and had “substantive editorial control” of the articles. Mr. Grassley said in a statement that he appreciated the publishing company’s response and would continue his own investigation.

Copyright 2008 The New York Times Company
Out of control. You think it's bad when you read about the FDA and the CDC. I was quickly reminded that it's pervasive across all areas in the medical community.

Monday, November 24, 2008

Strep and Rife Machines

I finally have some positive news to share. I found a technology that dramatically reduces Leo's facial tics. Both my kids, especially my 10 year old son Leo, has an autoimmune response when exposed to strep. No high fever, angry sore throat here. His class could have 4 kids infected and home and he'll respond with eye blinks, strabismus, neck turns, and a furrowed brow. And again when I tested him on the EAV machine, strep came up as the winner.

His facial tics have been the worst EVER this fall. What does this mean? Did I wait too long to find something that works? Is he just getting more immune compromised? I just don't know and I'm certainly not going to waste my time by asking a medical doctor.

The strep nosode (a homeopathic remedy) helped for a while, but eventually the tics came back and the repeat dosing and other remedies stopped working. I'm sure this is a failure on my part (the mom practitioner), not with homeopathy. When you get it right, it works permanently.

I researched and purchased a Rife machine for my daughter Sydney's chronic Lyme disease. Yes, we are still in Lyme Hell after 6 weeks on antibiotics with no end in sight. The Rife machine, another way to kill the Lyme bacteria, is part 2 of my master plan. We will use this to wipe out any remaining/hiding Lyme so she will not relapse and go back to Lyme Hell (and neither will the rest of us in the family).

The machine, the EMX, costs around 1300 with shipping. I purchased mine at People that are electricians can build them by themselves with an old stereo system and other stuff you buy at Home Depot. Well meaning people have posted all this info for free, including the frequencies for the various Lyme life cycles. I couldn't find much about strep and rifing, hard enough with Lyme, but the movement is growing rapidly.

Here is another website with Rife info:

So here I am, in my world of bacteria. Lyme and Strep. My new world. Somewhat new anyway. Perhaps a new possibility to end chronic health issues. Dare I type it.

Thursday, November 20, 2008

FDA sets up offices in China to ensure food safety

So this is now what our tax dollars are going towards? Lame government employees overseas to somehow ensure the food that's shipped is safe. They say they are reacting to the melanine incident. But what about the food we have here in this country? OUR food supply is what needs improving, babysitting, monitoring, what have you. Is it really more cost effective going to China rather than fixing our food supply woes here? Even if I didn't have a degree in economics (which I do, a minor anyway), this doesn't jive.

In over my head with Lyme, but I couldn't let this little nugget of info go by without comment. IDIOTS


Tuesday, November 18, 2008

Friendship Perspective Taking

I went to dinner with a group of women friends recently. A very New England group - wealthy, fit and pretty, and live very homogenius lives for the most part. Tennis, PTA, coffees, husbands socialize, jewelry parties, you get the drift. Karen grew up in the area, has her family local, and has a wide array of friends from work, school, and the community. I have always been envious of her comfort and how easy her life seems to me. How nice is it that she has so many people to call for sitters, to go for coffee, a real solid base. I've told her she has an amazing life. She's offered to help me with the kids, which I've taken her up on before. She really gets it and is thankful.

I am somehow accepted into this group although I don't feel I fit in exactly. Good enough, they can be fun, our kids go to school together, a night out is always a plus. Anyway, one of the women, let's call her Karen, starts talking about another mom that's not there, Jennifer. Karen sets up her story first by saying the right things, "I shouldn't be talking bad about her, she's really nice, it's nothing really." We all lean in, eagerly awaiting any juicy story.

I felt conflicted because I recently met Jennifer and thought she was really nice, and better yet, was a UNIQUE person that had passion and good energy. I recently talked to her at an event, we didn't even talk about kids, a breath of fresh air. I thought I should "say something" but decided against it. I thought it may ruin the fun for everyone, knowing this is dinner party conversation, no need to be so serious. So I sat back and just listened.

She starts to say how Jennifer is very quirky, she learned how to knit, and then a month later went into the knitting store and bought yarn for 5 sweaters (for her family) and became totally obsessed. They all laughed about it, and I sat there thinking how I liked that about her, her passion and drive. She goes on to say that Jennifer's husband tells people that Karen's husband is "one of his best friends". And also tells people the same about her, that they are "good friends". They all laugh about it, saying how crazy that is, that they aren't even "friends", they carpool together and do PTA stuff, but that's it. Karen's husband states they aren't friends either, they went to school together, and in fact they all made fun of him because he was so nerdy and strange.

Funny, I had plans later that week with Jennifer, and that night I met her husband. Definitely an Aspie! I really liked him a lot. He didn't "get" that we were talking girl talk at one point, and continued to stand there. He even joined us with a glass of wine. It was a little threesome, certainly not what I expected, but still fun. I would've rather chatted with just Jen, but that's what was going on. At one point, he mentioned Karen and said her husband was one of his best friends!

I thought about the two different versions of friendships over the next day. I realized that neither person was "wrong". Jennifer's husband hardly socializes and doesn't have a large stable of friends like Karen's husband does. According to Jen's husband, his perspective is that YES, they are very close. According to Karen's, they are not, because he has a wide array of friends, and doesn't even consider him in the category of friend, just a classmate. Neither husband are aware of each others perspective.

I am very aware of the friendship disparity with my own situation. As a west coast transplant and Autism refugee, I try not to take it personally when I'm not at the top of the list with some of my friends. My "close" friends and BFF live peppered all over the country, none are local. I have many "good" friends locally, especially Autism friends. Even Karen is a good friend, we've known each other a long time. I am not sure if it's worth pointing all this out to Karen or not. Either way, I know it's not malicious, just ignorant, and maybe insensitive.

Seems that perspective taking doesn't happen as often as it could.

Book Fair Week

The kids seem to rarely be at school in November. I enjoyed looking over their "wish lists" for the book fair. We talked about allowance money, our contribution (parents contribute half). As I was reading his list, he says to me "Mom, since I'm getting older, I'm not obsessed with the big hard cover books that come with toys. These books are all chapter books that are not as expensive." Good observation!

Leo got his first 4Th grade report card and it looks like he continues to be a solid B student (one A in science). I wasn't surprised by a B in math because of the geometry focus. I am very proud of him! His personal development section needs improvement - he looks like again he's talking to much to his friends. I am still thinking about when he couldn't talk, so as long as he's absorbing the lectures I don't care too much, although I don't want him to think being disrespectful to the teacher is "okay". We already laugh too much about the finger game.

Friday, November 14, 2008

Our Lyme Hell, Still In Pain After 5 Weeks Of Antibiotics

So my daughter is still in chronic pain after almost 5 weeks of antibiotics. I took great pleasure in filling out the form from our ped's office to transfer our files to our new pediatrician. I pressed down hard and checked "entire contents." Yeah, fuckers! Too bad I don't have extra time right now to file a complaint to the state for their mishandling, or do the high road thing and prepare a Lyme care package that includes the latest info on chronic Lyme and Lyme's broader symptoms. I have visions in my head of beautifully wrapped books with extravagant bows to be delivered to each and every one of those "doctors" in that practice.

I got a call from "Nancy", the office manager that I have NO RELATIONSHIP with whatsoever. The obligatory "why are you switching" call. They don't give a shit, ped A will be relieved that he will no longer be getting articles shoved in his pocket and biannual arguments. I'm done. So of course I'm not going to call, mainly because how can I possibly condense my problems into a simple list? And they won't change, so why bother.

But I move on. I have moved from ped A to ped B. I have a very good Lyme specialist. I have an incredible nutritionist and homeopath. I push about 30 different substances into my child's 60lb body each day while she aches from head to toe. Her antibiotics make her nauseous each time she takes them, which is 3 times a day. For 2 months she's had the following symptoms:

pulsating headache that wraps around like a band
sore neck
rib pain
chest pain
stomach ache (worse with food)
sore back (can't even touch)
arm and leg pain
sore shins
wrist, ankle, and heel pain (so bad she has to sit in the shower because the tile hurts her feet)
hip pain
dizzyness after any sugar (Halloween night was "fun".

How does she do it? I don't know. Her personality has changed, it's wearing on all of us because she is miserable. Leo gets his share of her irritability and sensitivity. I talk to him every day about it, validating him, and seeing if he needs to talk. He does "get it", he's amazing. But still unfair. And they share a room!

I have the "right" blood work done that tests positive for Lyme along with a normal CBC panel. I have my cancer doc friends that reassure it's not a cancer based on her symptoms and her testing. I now have to sit and wait for her to get better. No one knows when, there isn't a handy chart that will indicate when this hell will be over.

I wish I could just walk away from health problems and go back to advertising without a care in the world. I wish I could just buy food because, hey, it looks yummy. I wonder if I should take up smoking.

Thursday, November 13, 2008

WSJ: And You Thought the Debate Over Fluoridation Was Settled

And You Thought the Debate Over Fluoridation Was Settled
As a baby boomer growing up without fluoridation, I had 14 cavities before my 18th birthday, including seven at one particularly mortifying dental visit.

A generation later, my teenage daughters, who've grown up in a fluoridated city, have a combined total of none.

I assumed that the debate over fluoridation was long settled -- after all, the Centers for Disease Control and Prevention calls adding minute quantities of fluoride to municipal water supplies one of the 10 most significant public-health advances of the 20th century. But opposition remains fervent in some communities. More than 180 million Americans have access to fluoridated water, which leaves over 100 million who do not.

Fluoridation is on the ballot today in 41 such communities in Nebraska, as well as one in New York state, one in Maine and two in Wisconsin -- and the battles echo 60 years of controversy.

"Fluoride is a poison. You can't dump it in the ocean or a landfill, and they want to put it in our water. It's insane," says Marvin "Butch" Hughes of Hastings, Neb. (population 25,000), who heads the local chapter of Nebraskans for Safe Water.

"I've had reporters ask me if fluoride can be used to make weapons of mass destruction," sighs Jessica Meeske, a pediatric dentist in Hastings and board member of the Nebraska Dental Association, which supports fluoridation. She treats patients from communities that have fluoride and those that don't: "The kids who don't have more cavities, and the cavities are much deeper. They're in a lot of pain. They aren't able to eat. They don't do well in school. And the decay just escalates. It spreads from tooth to tooth."

Controversy has dogged fluoridation ever since scientists determined in the 1930s that tiny amounts of the naturally occurring mineral added to water can guard against tooth decay. Opponents dubbed it a Communist plot and have claimed over the years that it raises the risk for cancer, Down's syndrome, heart disease, osteoporosis, AIDS, Alzheimer's, lower IQ, thyroid problems and other diseases.

In 2006, the National Research Council warned that high levels of fluoride -- roughly four times the amount typically used in water systems -- are associated with severe dental fluorosis, in which teeth become mottled and pitted, and could cause bone fractures. A separate study linked fluoride with a very rare bone cancer in boys.

Bill Bailey, a dental health officer at the CDC, says while a few isolated studies have raised such questions, "there's never been any compelling evidence that fluoridation has any harmful health effects" in over 60 years of research. A long list of medical associations have also endorsed fluoridation, including the American Dental Association, the American Medical Association, the World Health Organization and the past five surgeons general.

Overall, drinking fluoridated water cuts the rate of tooth decay 18% to 40%, according to the CDC. Studies have shown that it can help "remineralize" weakened areas in children's and adults' teeth, allowing many more elderly Americans to keep their teeth all their lives. The ADA estimates that every $1 spent on community fluoridation saves $38 in dental bills.

Fluoride is now widely added to toothpaste and mouthwash -- even many varieties of bottled water -- and dentists in unfluoridated areas often urge patients to use supplements. So some critics wonder whether adding it the water supply is necessary. Dr. Meeske says many poor families that she treats can't afford the supplements, and that fluoride is more effective at protecting teeth when it's ingested, so that teeth are continually bathed with a low dose. "It's much cheaper and simpler to prevent decay through water fluoridation than to drill it and fill it out of teeth," she says.

If you're concerned or just curious about the level of fluoride in your water, ask your local water utility. Home water filters that use reverse-osmosis (not the activated carbon filters that sit on a tap) can reduce fluoride as much as 99%. But think really hard before you do that: Take it from me, it's no fun getting your teeth filled.

Which state has the highest rate of fluoridation? Kentucky, where 99.8% of residents received fluoridated water, as of 2006. Hawaii had the lowest percentage, at just 8.4%. Next lowest was New Jersey, with only 22.4% of residents receiving fluoridated supplies. To see where your state ranks, see this CDC link:

Write to Melinda Beck at

Copyright 2008 Dow Jones & Company, Inc. All Rights Reserved

As we all know, it's not just about fluoride in public water. It's about the overall consumption of fluoride. That fluoride water is used to produce all our food and beverages. The total isn't known, but we all know it's big, and fluoride is a metal. A big concern for any human being, let alone a child, let alone a child with deficits. The big picture is being ignored once again. For us personally, I'd take my cavity ridden children any day over endless detoxing and additional neurological problems. Idiots!

Friday, November 07, 2008

4th Grader, 10 Years Old, Fall Update

November 5th, 2008 - Day One of Obama as President Elect

It's been a mellow beginning of the year for Leo. He seems to like school much better. I think he "gets" his teacher now. He tells me that he learns a lot from him and is very funny, but that he can be very boring. And that 4th grade is boring. I can't blame him. I am thankful his seat is in the front row next to the window. He gets ventilation and the ideal seat for a visual learner. He actually likes violin, an option he can do that requires a pull-out. He and his BFF signed up as a way to get out of being in class, but now he actually enjoys it.

We too "enjoy" the enthusiasm at home in our modestly sized home where there just isn't any escape. He's also gotten back into his acoustic guitar thanks to the people over at Guitar Hero. I say "thanks" to that, but a real thanks to introducing my kid to music I actually love from the 80s.

More about school - he seems to work a little harder this year at homework, taking I'd say 5 to 10 minutes longer. New for Leo, more thinking required rather than execution. Although 4th is more of a repeat year, I can see it's more challenging for him. I continue to monitor, and take note of the geometry assignments that come home that are very frustrating for him. As I've posted before, our strategy is reminding him about the big picture - most things come easily to him, many people take lots of time and struggle on most things, but for him this isn't the case.

We celebrated small this year for Leo's 10th birthday. Yes, I have a child that has a two digit age. I can't believe it! We let him choose one friend to go to a local hockey game with, along with Sydney, his dad, and his cousin and Uncle. The game was great, and he said how he actually liked it better that just one friend was there rather than lots of kids. I think he found it more meaningful and a calmer time. Of course he chose his BFF to go to the game.

These boys are inseparable. They call each other right off the bus, they talk on weekends, email each other. They have a secret code in class for various boy explusions. I can't recall exactly, but it goes something like this: You quietly "cough" to alert the other boy, then slyly hold up a finger indicating what bodily function just occurred. One finger is a burp, two fingers a fart, and so on. I think there's a signal for when you are bored, and when to call the other one an "ass". I treasure all of this, and appreciate the boyhood humor. The finger signals have expanded to two other boys, so let the fun continue! They discovered how to look up bad words in the class dictionary, so they have fun with the exact definitions. Ass is their favorite, and recite the specifics of what a rump is. They giggle and chat about it every day.

Fall Ball was fun and has finally ended, so our days are fairly simple until basketball starts (my idea). Leo just has to carpool with me for Sydney's ballet and hip-hop classes. He still loves coming home and unwinding by going outside to play "imaginary football" where he makes up games in his mind and runs around doing plays. I still consider this a stim, a way for him to transition out of school and let his mind have a break. Yale doesn't since it's appropriate play that's not obsessive, but I see it differently.

On the health front, Leo hasn't been sick all year, and his facial tic (mainly his eyes) are minimal. One kid noticed early on in the year, naturally this was his former arch nemesis-turned good friend-now just "okay" friend that rides the bus with Leo. He had a flare-up this week but it subsided after giving him the strep nosode, a homeopathic remedy. I hope to get him tested for Lyme as well as look at regular blood work to see how he is functioning. I am sure I'll need to tinker a bit.

Emotionally, life has been a little challenging for Leo because Sydney has chronic Lyme. We couldn't stay to watch all the games or do lots of extra activities because they were limited to how his sister was feeling. I haven't spend a lot of quality time with him, at least he's had it with his dad. As the caregiver-pill-pusher-lead-researcher, I am mostly with Sydney as we go along. She is stable now, so we've "kind of" adjusted to a new life that hopefully is temporary. She has about 6 months to go on treatment (I am estimating), and is back to school regularly. For more about Sydney, go to my blog.

Halloween was fun, of course he ran around with his BFF and his sister, hitting EVERY house this year in a certain easy neighborhood we go to. It was really cute. The conversations about what to be were challenging - he wasn't sure and wasn't into it, but in the end went as a punk rocker. His hair is pretty long now, so we put lots of gel and spray in it, he wore black bracelets and a metal belt with an ACDC t-shirt. He looked like Billy Idol, snarl and all. I figure I got a couple more years and he'll be staying home, until he's an older teen hitting parties (insert look of dread and fear here).

That's about it. Round two with chronic illness for me, so I'm not very happy right now, but I'm grateful my sweet boy is happy and doing well.

Thursday, November 06, 2008

Kid vaccines okay for kids at risk for allergies

Kid vaccines okay for kids at risk for allergies

2 hrs 34 mins ago
NEW YORK (Reuters Health) – In children at increased risk for developing allergies, common childhood immunizations do not increase the risk of more severe eczema or allergies, according to a study published in the journal Allergy. Infant vaccinations have been suggested as the cause of atopic disease. Atopy refers to the tendency to develop allergies, such as "atopic" dermatitis, hay fever and asthma.

Atopy occurs as a result of an excessive inflammatory response to everyday environmental substances, such as dust mites and grass pollen."Atopic diseases are among the commonest chronic conditions in childhood," Dr. Christoph Gruber, of Universitatsmedizin Berlin, Germany, and colleagues wrote in the journal. "Parents of children at heightened risk for atopy are frequently concerned about the effect of immunization in infancy."

Gruber's team examined the effect of immunization in the first year of life in 2184 infants between the ages of 1 and 2 years with active atopic dermatitis and a family history of allergy. Sixty-five percent of the children showed signs of having allergies.
According to the researchers, there was no association between immunization with any particular routine childhood vaccine and an increased risk of allergic sensitization or more severe eczema -- an itchy red skin rash that affects up to 20 percent of children.

On the other hand, varicella (chickenpox) immunization seemed to offer some protection against allergy and eczema severity and pertussis (whopping cough) immunization offered some protection against eczema severity. The team concludes, "Parents of atopic children should be encouraged to fully immunize their children."
SOURCE: Allergy, November 2008.
Copyright © 2008 Reuters Limited.

I hope this doesn't mean my Obama glow from his win will be short lived....This is the craziest thing I've ever heard. Well, recently anyway. The headline is the most disturbing part because that's about all that most people will read. Yikes! This study doesn't show the safety of anything! Where is the non-immunized control group? What was the exact criteria used for atopy since there are so many variations and severities? The article just talks about an itchy red rash, not the myriad of symptoms associated with the word "allergies" that is in the headline. Totally irresponsible reporting that again misinforms people! How was there "added protection" with pertussis and varicella? What about the myriad of allergy symptoms often present at birth and in early childhood beyond 2? Even 2 to 5? Are we that stupid?

Tuesday, October 28, 2008

21-Year Study of Children Set to Begin

October 28, 2008
21-Year Study of Children Set to Begin

After nearly a decade of planning, researchers will begin recruiting pregnant women in January for an ambitious nationwide study that will follow more than 100,000 children from before birth until age 21.

The goal of the federally financed project, the National Children’s Study, is to gain a better understanding of the effects of a wide array of factors on children’s health.

“What we are doing is bold and needs to be bold in order to answer some pressing questions,” said the study’s director, Dr. Peter C. Scheidt, a pediatrician on the staff of the child-health division of the National Institutes of Health.

Investigators hope to find explanations for the rising rates of premature births, childhood obesity, cancer, autism, endocrine disorders and behavioral problems. To that end, they will examine factors like genetics and child rearing, geography, exposure to chemicals, nutrition and pollution.

While few quarrel with the goal, some experts worry that the expansive project will take resources away from smaller and more focused perinatal and pediatric research, particularly when budgets are certain to be strained by the financial crisis. The total cost is estimated to be $2.7 billion.

Participating mothers and children (fathers will be encouraged but not required to take part) will be given periodic interviews and questionnaires. They will further be asked to submit samples of blood, urine and hair. Air, water and dust from their environments will also be sampled and tested.

“Something like this has never been done in this country,” said a principal investigator for the study, Dr. Philip J. Landrigan, professor and chairman of community and preventive medicine at Mount Sinai School of Medicine in Manhattan. “It’s past time for us to do this.”

Studies of comparable size and scope are under way in Britain, Denmark and Norway.

Conceived during the Clinton administration and authorized by the Children’s Health Act of 2000, the National Children’s Study is being led by a group of federal agencies. Besides the health institutes, they are the Department of Health and Human Services, the Centers for Disease Control and Prevention, the Environmental Protection Agency and the Department of Education.

Since 2000, more than 2,400 health care, environmental and technology professionals have met in panels for hundreds of hours to work out such details as sampling methodology, data collection and privacy protection.

Subjects will be chosen from 105 counties to achieve a representative mix of racial, ethnic, religious, social, cultural and geographic characteristics. Forty regional centers will administer the study — mostly well-known medical institutions like Mount Sinai, the University of North Carolina School of Medicine and the University of Texas Health Science Center-Houston.

Dr. Russ Hauser, a professor of environmental and occupational epidemiology at the Harvard School of Public Health who served on a National Academy of Sciences committee that reviewed the study’s design, said the study would be “worthy and feasible” as long as it was properly financed.

But other experts questioned whether it was worth the cost. “The question isn’t whether the goals can be accomplished,” said Dr. Arthur Reingold, professor of epidemiology at the School of Public Health at the University of California, Berkeley. “It’s more a question of is this the best use of almost $3 billion, particularly when it will inevitably take funding from other research, especially with the economy falling to pieces.”

Researchers involved in the study counter that it will more than pay for itself by leading researchers to the causes or contributing factors for so many childhood disorders. Dr. Landrigan said a “dress rehearsal” of the study, which began in 2001 with 1,500 subjects from New York and California, has already shown that pregnant women exposed to organophosphates in pesticides were more likely to have babies with small brains and impaired cognition.

Another concern is that the study’s advisory board — which is choosing the chemical exposures to be studied — includes scientists from 3M and Pfizer, who have apparent conflicts of interest.

But Richard Wiles, executive director of the nonprofit Environmental Working Group, said that since there were only 2 such scientists among the board’s 33 members, he hoped they would not have undue influence.

Copyright 2008 The New York Times Company
Too bad it'll take 20, well actually more than that, what, 25 years, for any result. I could see this not being executed very well and disputed. I also can see it as a way to lessen the blow of blame for later when it's too late. We'll all be sitting and reading our papers 20 years from now saying, "Why did they waste time and money on stuff that we already knew?". Kind of like the tobacco industry. I am still amazed by articles that are still published about the dangers of tobacco. It breaks my heart that they could approve that sum of money for that rather than helping today's generation of children.

Saturday, October 18, 2008

Mommy Guilt

I was at my town's allergy support group yesterday. I don't go to these support groups very often anymore, but I knew my friend Carol that's on the wellness committee would be there, figuring we could connect. At one point people were talking about how their child had "grown out" of a certain allergy. I didn't say a word about that and just listened (still hard to hear), but instead tried to focus on my own response to what parents shared.

When it was my turn to share, I said fortunately we only need to consider one food gluten. The mom asks me how many allergies my kid had before, so I quickly summarized by saying he had started out with 9 food allergies and 11 environmental, and didn't say ANYTHING else. Not that I have all the answers, but success with alternative treatments is something people have to WANT to hear.

A few moms stared, and said, "how did you do it"? Surprised by the interest, I said, well, I healed my son through food and supporting the immune system rather than medicine. They pressed on and asked for more details, so I gave the top line answer of organic, whole foods, fish oil, blah blah and today with homeopathy and detox. I was very brief.

They asked about testing, and I said we used it mostly as a loose guideline of where to go, but that we used IgG levels. They were very impressed, and one mom said they had used bioset. I said we love bioset and were successful with that too. They said it was inspirational to hear a positive story.

On the other hand, the group leader totally got agitated and went on a rampage about her "renowned doctor, head of what have you" says IgG is useless. I didn't have any reaction whatsoever. I just politely listened to her internal guilt and struggle she had with her choices. I think I've really mellowed.

This mom also happens to be an autism mom. I've had one big parking lot discussion with her a couple years ago, and she basically passed on advocating for an autism program for him because of the "cost" to the older sibs and family lifestyle. I offered my help to go to her IEP meeting, etc. She declined and said, "We all have to make hard choices" , which I accepted. But that was then, and today I wasn't even sure she remembered me since I don't go routinely.

It was nice walking out of there without taking on the energy of this mom that clings to her choices because she'd rather be right than accept that others have had success trying things she hasn't. I walked out friendless, but I was at peace.

Thursday, October 16, 2008

The New Strep and the Role of Prevnar, a Vaccine

October 14, 2008
Worrisome Infection Eludes a Leading Children’s Vaccine

A highly drug-resistant germ has become a common cause of meningitis, pneumonia and other life-threatening conditions in young children. The culprit — a strain of strep bacteria — can conquer almost all antibiotics in pediatrics, and has dodged a vaccine otherwise credited with causing the number of serious infections in children to plummet.

Since 2000, American toddlers have been immunized against Streptococcus pneumoniae, or pneumococcus, an organism that preys largely on children younger than 5 and the elderly. Pneumococcal meningitis can be fatal, and survivors are often left with deafness and other lifelong neurological problems.

And by most measures, the vaccine has worked: by 2002, rates of infection from these bacteria had dropped as much as 80 percent in some places. But progress has now stalled, and infection with a particular type of pneumococcus, Serotype 19A, is steadily rising.

“It’s very much a concern,” said Bernard Beall, a pneumococcal expert at the federal Centers for Disease Control and Prevention. Last year, in The Journal of the American Medical Association, pediatricians described an outbreak of Serotype 19A ear infections in Rochester that could be cured only by surgically implanting tubes, or by turning to adult medicines not yet tested for safety in children.

A greater worry, however, is the frequency of meningitis, pneumonia and bloodstream infections from Serotype 19A. Since 2001, rates of these and other invasive pneumococcal diseases have crept upward, to more than 10 per 100,000 children from about 2 per 100,000. A fourfold increase in life-threatening infections has also occurred among the elderly.

The vaccine, Prevnar, is aimed at seven types of bacteria that were responsible for 70 to 80 percent of pneumococcal illness during the 1990s. Because pneumococci come in 91 forms, experts have worried from the start whether bacteria that were just as deadly, but not wiped out by the vaccine, might move in as opportunists when the competition suddenly vanished.

“Nature abhors a vacuum,” said Dr. Steven Black of Cincinnati Children’s Hospital. Indeed, almost all pneumococcal infections among American children today are caused by versions not covered by the vaccine, and 19A is leading the way. “People hoped against hope it wouldn’t happen,” he said.

The vaccine’s manufacturer, Wyeth, says it has been working quickly to develop a new product to counter 19A and five other pneumococcal variations, along with the original seven. The company will release results of the first large studies of the newer version this month at an infectious disease meeting in Washington.

“There was no point where we said to ourselves, ‘We missed it, we need to put in 19A,’ ” said Emilio A. Emini, head of vaccine research and development for Wyeth. The company was always prepared to remake the product, he said.

Once a new vaccine demonstrates that it can protect against pneumococcus, it must work its way through the approval process — passing tests of effectiveness and safety — before it can be licensed. Researchers will also try to determine whether young children who have been immunized with the old Prevnar should be revaccinated to protect themselves from 19A.

The remodeling of a vaccine so soon after its approval is highly unusual, but so was the effort to tackle pneumococcus.

The bacteria live in the nose and throat, usually as microbial freeloaders of no consequence. Occasionally — often after a simple viral infection — pneumococci slip into inner areas of the body and cause disease. Weaker immune systems in the very young and the very old leave them most vulnerable. (The pneumonia shot in older people includes 19A, but many elderly people have not received the immunization.)

Not all of the 91 incarnations of pneumococcal bacteria are dangerous. They developed so much variety by mingling in the back of the throat, exchanging genetic material as eagerly as children trading Halloween candy. The variation in genes slightly alters how the bacteria function and how they are received by the immune system.

For vaccine manufacturers, pneumococci’s diversity presented a challenge: how to teach the immune system to recognize a target that may look a little different from child to child. “This is the most complex biological product ever made,” Dr. Emini said.

Serotype 19A was around in the 1990s, though uncommon, and the vaccine includes a similar version called 19F. The hope in 2000 was that 19F looked enough like 19A to set off an immune reaction. It did not.

Experts say it is hard to know what role the introduction of Prevnar may have played in the rise of the bacteria, which was gaining momentum in some countries before the vaccine’s adoption. For example, researchers from GlaxoSmithKline, which is introducing its own pneumococcal vaccine, reported last month that Serotype 19A became more common in Belgium from 2001 to 2004 — years when pneumococcal vaccination was rare in that country. Similar reports have emerged from China, South Korea and Israel.

Pneumococci ebb and flow in natural cycles, and some types have gained a survival advantage by growing resistant to a host of drugs. The vaccine may have simply amplified natural trends..

“I don’t think anyone can tell you the relative contributions of these factors,” said Dr. Sheldon L. Kaplan of Texas Children’s Hospital in Houston. This summer, he and his colleagues described a growing number of cases of drug-resistant mastoiditis, an infection of an inner-ear bone, from 19A.

Experts are now watching to see how forcefully the organism will spread before the new immunization arrives. Wyeth says it hopes to file an application with the Food and Drug Administration in 2009.

Disease experts also wonder what organisms like 19A mean for the future of pneumococcal infections. Public health experts once hoped the infection could be defeated, but it now appears that pneumococci may be playing a game of cat and mouse.

“The pneumococcus has shown an extraordinary ability to evolve to our strategies,” said Dr. Beall of the C.D.C.

Yet he and others are quick to say that immunization remains highly effective, even if it leaves some children behind. “This is not a failure of the vaccine,” said Dr. George H. McCracken Jr. of the University of Texas Southwestern Medical Center at Dallas. Even with the rise of 19A, children are much less likely to become ill from pneumococcal infections.

Dr. McCracken hopes that researchers will one day avoid threats like 19A entirely by developing a vaccine that primes the immune system to recognize some element common to all 91 types of pneumococci — in the way a quiche, an omelet and a custard pie are all versions of eggs. But until such an immunization comes along, he said, pediatricians will be forced to battle the pneumococcus as they always have, by trying to stay one strain ahead of its game.

Copyright 2008 The New York Times

This isn't suprising and very disturbing. I am at a loss of what to say here.

Thursday, October 09, 2008

Screaming For Antibiotics, our Lyme Hell

Leo's younger sister Sydney most likely has Lyme. Although I've been immersed in her illness only since the beginning of September, it feels like ages. It's been very scary, a chronically ill child, not sleeping through the night, not knowing for sure what the hell is going on. But, it's been day 4 on Amoxycillin, and she seems like she's slowly getting better.

The second week of school she fell ill and stayed home all week with flu-like symptoms. My instinct told me this was something bigger than your run-of-the-mill illness. She had a fever that hovered between 101 and 102 for 5 days. It would break during the day, tricking me into thinking she was better. Her complaints were a pulsating frontal headache that would travel like a band around her head. A sore throat that felt like "sticks" inside. A sore chest, a stomach ache. Most bothersome were her arm and leg soreness, and neck pain. At this time she had no rash and no joint pain, the old school symptoms of Lyme. My instinct thought Lyme! I had heard of so many people with "atypical" symptoms that turned out to be NORMAL symptoms of Lyme that were like Sydney. My doctor said abdominal symptoms are not Lyme. I just stared at her, not starting a fight just yet. My doctor would only order a strep test that eventually came back negative, chalking it up to some other illness, probably viral.

Sydney got better after 6 days of being very sick, and I thought I was out of the woods. Ah, but what came FROM the woods.....
After a week of feeling better and no facial tics I was elated. I thought perhaps this virus pulled out whatever was the cause of her tics. But, slowly her arms and legs were sore on occasion, but then would go away. I thought maybe she had a small relapse, or maybe the virus was still making its exit. Getting worse and worse, all of her flu symptoms came back along with some of her facial tics. I felt overwhelmed and very panicky. My homeopathic remedies that once kept these symptoms at bay were no longer working.

As luck would have it I went to a Lyme seminar and got educated. Good timing, it was in my book for weeks. I was shocked to learn that within traditional western medicine there are two hotly debated camps about Lyme. One camp holds the original doctors that once thought Lyme was viral and were Rheumatoid Arthritis specialists. Their symptom checklist is very narrow, the bulls-eye rash, swollen joints, high fever. A short round of antibiotics does the trick, one-size-fits-all. This is whom the insurance companies and the CDC back because they don't want to pay for all the Lyme patients or their very long rounds of antibiotics. I thought hmm...., this must be the camp my pediatrician is in.

The other camp includes the chronic Lyme patients, the missed patients that went undiagnosed and untreated for sometimes years because they had different symptoms - migraine headaches, malaise, chronic fatigue, mental symptoms, psychiatric symptoms, and all of my daughter's symptoms. There it was on the list in black and white - abdominal pain, and even tics!

I also realized there were major arguments about testing instruments, and the CDC's survey test is what many doctors believe to be the accurate testing instrument, the Western Blot. It is actually not designed for diagnosis, but it's still used. Just crazy because it misses so many people. It also doesn't help that the spirochetes, the Lyme bacteria, are evasive and hide deep within the tissues. Antibodies are not always present, the bacteria change their coating, they make spores, really difficult creatures to catch.

I couldn't believe it. Here I was, an Autism mom that is so used to fighting traditional medicine. But now, I must figure out and fight within traditional medicine?

Realizing I was under the gun, I quickly went to the pediatrician that spoke, and she assessed my daughter and ordered a battery of testing from the "right" lab, IGeneX in Palo Alto, CA. I got on the phone and online, and after a week I read the latest book on Lyme, "Cure Unknown" by Pamela Weintraub, a science writer, a mom of 2 boys with Lyme, had Lyme herself, etc. Always the moms that figure this stuff out isn't it?? My first line of defense was to contact my Autism support group, the BEST group of moms I know, for their advice. Of course they came through and had the best info. Many kids with ASD have had Lyme, and have had these "atypical" symptoms that I found are NOT unusual at all. I don't know what I'd do without their support and caring. They email me to check on me, and I'm forever grateful.

I must admit that it was disappointing to see that I could not help my daughter with homeopathy. It's my passion, what I've been studying, and our first line of treatment for illness for years. In fact, Sydney has never been on antibiotics and rarely goes to the doctor because we've been able to treat her with remedies at home (with the consult of our homeopath). But, I must move on, and as much as I dislike the side-effects of antibiotics, they are really needed in this case. I feel guilty, but it's not logical. At least we know the damage, and I am giving her lots of probiotics and other support, including drainage remedies that are homeopathic.

Tic toc I am waiting for the results to come in. The irony is that I'm hoping for a positive test. Her CBC results were normal, so if it's not Lyme, we may have done the tests too soon or it could be something else. Scary. I hope I'm not in the position to where the meds don't work and I have to change them or fight for longer treatment. I'm working on finding an infectious disease person in my area that is willing to treat kids. Many of them have been sued or investigated by the CDC for their treatment of Lyme, so they've closed shop or moved. To think that peds give out antibiotics for so many things that aren't necessary like your garden variety ear infection, but when it comes to a major full-body infestation, you must beg and scream for antibiotics. You must find the right people, and like making a drug deal or something, figure it all out and try to get it covered by insurance.

The good news is that I know how to fight and I know how to research, the sliver lining of Autism.

Thursday, September 25, 2008

Fish Reducing Eczema and Outdoor Pools Increase Asthma Risk

Fish in children's diet cuts eczema risk: study

Wed Sep 24, 10:01 pm ET
LONDON (Reuters) – Feeding babies as little as one portion of fish before they are nine months old may cut their risk of developing eczema, Swedish researchers said on Thursday.

Introducing fish of any type into the diet curbed the risk of contracting the skin condition by 25 percent compared with children who never ate it, Bernt Alm, a pediatrician at the University of Gothenburg in Sweden, and colleagues reported in the British Medical Journal.

"The main finding was that early introduction of fish was beneficial," Alm said in a telephone interview. "There was no link with the amount of fish or type of fish. We think it is more the timing of the introduction." Eczema is a chronic condition affecting between 10 and 15 percent of children that can cause the skin to become itchy, red, dry and cracked. It often affects those prone to allergies.The Swedish study is part of research tracking the long-term health of nearly 17,000 babies. The researchers found that genes played an important role in the development of eczema but breast-feeding and keeping a furry pet in the house had no effect.

Fish in the diet appeared to be important, but Alm said it would take further investigation to establish why. There was no extra protection from fish rich in omega-3 fatty acids, which provided other health benefits, Alm said. "It must have something to do with its influence on the developing immune system," he added.

(Reporting by Michael Kahn; Editing by Andrew Dobbie)
Copyright © 2008 Reuters Limited. All rights reserved.

Outdoor pools boost child's asthma risk: study

By Michael Kahn
Wed Sep 24, 7:07 pm ET
LONDON (Reuters) – Swimming in outdoor chlorinated pools appears to increase the odds a child will develop asthma, Belgian researchers said on Thursday. Other studies have linked chlorine and asthma but the new findings published in the European Respiratory Journal cast doubt on the idea outdoor pools are safer than indoor ones where chlorine vapors remains trapped inside an enclosed space."The more you swim, the higher the risk," said Alfred Bernard, a toxicologist at Catholic University of Louvain in Brussels, who led the study. "What is new in this study is that we looked at outdoor pools for the first time."
Asthma, which affects more than 300 million people worldwide, is the most common pediatric chronic illness. Symptoms include wheezing, shortness of breath, coughing and chest tightness.

Bernard and colleagues showed that outdoor pools are just as or more risky than indoor ones because harmful vapors remain at the pool surface and do not drift away. And because children tend to spend more time in pools they are more likely to swallow chlorinated water or ingest vapors containing chemicals that attack the cellular barriers protecting the lung from allergens, Bernard said. "We see that the risk of the outdoor pool is equal and even higher than indoor pools because children tend to spend longer in outdoor pools and they are more chlorinated," he said.

The Belgian team tested 847 students around the age of 15 for allergies and asthma and asked their parents about exposure to asthma risks such as tobacco smoke, pets and pollution, and how much time the children had spent in chlorinated pools.
The researchers determined that the risk for the 50 percent of children predisposed to allergies and asthma was directly related to the amount of time spent in a pool. Children with the highest pool attendance -- one hour per week for 10 years -- were five times more likely to be asthmatic than young people who had never swum in a pool, the study found.
"Young children are more exposed because they take more water into their airways and their lungs are still developing," Bernard said in a telephone interview.
(Reporting by Michael Kahn; Editing by Janet Lawrence)
Copyright © 2008 Reuters Limited.

Very interesting articles. Inhaling chlorine must be bad, period, end of story. It does kill stuff, which is why we use it, so it must be very taxing on the respiratory system, perhaps killing the lung "coating" surfactant, or somehow altering normal function of those exterior cells. I would've guessed only indoor pools did this.

Monday, September 22, 2008

The S%X Talk With My 7 Year Old

NOTE: I'm not spelling S%X out, because I don't want to be googled by gross child predators.

So I had the s%x talk with my daughter. It went surprisingly well, and she seemed to be ready for far more information than I expected. Note to self: Try to pay more attention to #2, she needs to learn how to tell time and how to tie her shoes (only because she's self conscious about it). Where has all the time gone?

So let me set the stage. We are in the car ALONE (good), driving to pick up Leo at baseball practice. We are listening to the soundtrack Juno, which is one of our faves. No, she hasn't seen the movie....It's perfect since we are driving, an activity, and we aren't face-to-face. Here's what happened:

Sydney: "Mom, what's the movie Juno about anyway?"
Mom: "It's a about a young high school girl Juno that gets pregnant. Do you remember what 'pregnant' means?"
Sydney: "Yes, it means you have a baby in you."
Mom: "Right."
Silence on the set, a few minutes pass.
Sydney: "So what happens to Juno? How did she get pregnant? HOW?"
Mom: "Well, she had sex with her boyfriend. That's how she got pregnant. Do you know what S%X means?"
Sydney: To my relief, she says "No."
Mom: "Well, remember how flowers have stamens and pollen?" I can't seem to remember my flower reproduction info.
Sydney: "Yeah"
Mom: "Remember how all animals including people have eggs if you are a girl? Well boys have something called sp$rm."
Sydney: "Yeah"
Mom: "Well, married people, and sometimes people that are dating have S%X. Insert drum roll here as I am sweating profusely now....The p$nis goes into the v$gina. That is S$X. That's how the egg and the sperm get together to make a baby."
Sydney: She has an unexplainable look on her face, not fear, but wonder and amazement and a little shock. A light bulb. She says, "Oh."
More silence, then we talk about other things for a few minutes.
Sydney: "So why did she do that? Didn't she know she could get pregnant?" Bonus points for Sydney! Insightful question!
Mom: "Well, you know how moms and dads hug and kiss? And sometimes boyfriends and girlfriends do that too? Well, in addition to s%x making babies, some people want to do it because they think it's fun. They like to do it. They must have gotten carried away and weren't thinking. They must have forgotten."
Sydney: "Is that what happened in the movie?"
Mom: "I don't know, the movie starts where she is already pregnant, and because she is too little to be a mommy, she goes to her parents and tells them. The whole movie is about Juno and her parents finding a mommy and daddy for her baby so she can go back to being a kid again. You remember how your Auntie is going to adopt because she can't have a baby in her tummy? Juno looks for someone like that, people that REALLY REALLY want to be a mommy and daddy so bad.
Sydney: "What happened. Did Juno find parents for her baby? "
Mom: "She did, and she went back to high school and was a regular kid again."
Sydney: More time passes and I think it's over. Then, I hear "So Mom, is that what you and daddy did to have me and Leo?" She has a somewhat embarrassed look on her face and a little bit of a smirky smile.
Mom: "Yes Sydney, that's what ALL parents do.

I immediately told my DH and said you gotta get on it with Leo. The kids may talk about it. You have the same equipment, so you have to do the "p$nis goes into the v$gina" stat! So the next day he did.

Leo says "Gross."

Yeah, we got it over with! Well, I'm sure there will be more layers to follow another day.

Standardized Testing Results

I had a big mommy day on Saturday. First, my 7 year old daughter annouces she's finally read to get her ears pierced (I've been waiting....). Then, we come home to find Leo's standardized test results in the mail. A wave of nausea and anxiety kicked in while I sit in the car and open the envelope. Here are the results:

Overall Results
Leo scored at goal level on all 3 tests (Reading, Writing, and Math). Goal level is level 4 out of 5 levels. I am so proud of him! What the results mean I'm not sure. We have definite areas where he tested low which brought down his score significantly. Is he testing close to what he knows? Not sure. All I know is he knows how to take an inane bubble test. Here are the details:

Leo: 257
School Average: 265
District Average: 276

He tested low on these subtopics:
Customary and Metric Measurements
Integrated Understandings; Math Applications
Both of these areas make total sense with visual spacial problems.

Leo: 250
School Average: 256
District Average: 257

He tested low on these subtopics:
Examining the content and structure

Read comprehension raw score: 29 out of 40 (not sure if this gap is typical or not.

Leo: 274
School Average: 268
District Average: 272

He tested low on these subtopics:

The good news is that he is testing within normal range! And to top it off, I have some low results to guide me for specific support when Leo needs it. I'm going to research these areas along with anything the Yale report says to put together stuff for when we need it. Yeah! Nothing like being prepared, if only the rest of my life were like this.

I am wondering if there is any downside to sharing the results with Leo. I don't see any, I've always been honest about his challenges. Just not sure, what if he starts to compare results to his friends at school? Not that it should matter? Or should I protect the baby as long as possible. I'll have to think about it. Anyone, anyone?

Monday, September 15, 2008

First week of 4th Grade, He's Catching On

D.C. shoes are IN for both kids. They look like giant puffy clown shoes to me, but I guess I'm not the one wearing them!

Leo and Sydney got on the bus the first day of school like it was a normal day from the spring. No real excitement or anticipation, just business as usual. I, on the other hand, was fine until the bus appeared over the little hill, and my eyes started to well up. Sydney, now in 2nd grade, looks at me while reaching out to touch my shoulder, and says"It'll be okay, Mom." Leo, now in 4th grade, dutifully leaned over for an A frame and off they went, leaving me confused as to where all the time went. I logically know, but man, it's still tough for me.

Sydney and Leo are in the mediocre grades at our schools, they are both considered repeat/reinforcer years. 1st, 3rd, and 5th are challenging and demanding, they throw all the new stuff at them in these grades and let the dust settle in between. I kind of like this strategy, should be a fairly easy year with not very much homework.

But back to the first week, Leo HATES school. Each day he says how absolutely boring it is, and honestly I can't blame him. Now that he's older, they go to lunch later, and they have their specials first thing in the morning, so the day isn't broken up much. He tells me that he tries not to look at the clock, and when he finally does, only 5 or 10 minutes have passed and it "just sucks, Mom." I've been there, and he's finally catching on to the rest of his life. The cheerleading cushy fun energetic times are over I think. But I do like his teacher, a sweet older man, his first male teacher. He's very old school, very ernest, a sports fan, and has a dry sense of humor. It's probably a good fit even though he's not that exciting.

Leo learned that an instrument was optional this year and they do weekly pullouts, he signed up for violin just to escape! I rented the instrument, so hopefully he'll actually enjoy but either way I'm covered. I can already hear the violin practice....

The social makeup looks very good this year. A nice group of boys in Leo's class, including his BFF. We are thrilled because this boy is a great friend in every way, they learn from each other, and we like the parents. Leo is playing AAA fall ball and is loving it per usual. Most of the same kids, some a blast from the past, really fun. He's learning to pitch now, I really like how they take turns playing ALL the positions. I still can't believe he can catch a ball let alone play organized ball sports by choice. Leo takes his football to school every day, and they play touch football games at recess. A nice group of boys that broke off from a large group that are more competitive and aggressive. A turnoff for Leo, but the good news is that he isn't alone with these sentiments. He's happy with his friends, I am estatic about this.

Sydney had a good start, then got a flu that had her miss an entire week of school. She was so sick, I thought for a while she may have had strep or even Lyme. I still think both my kids have some sort of suppressed Lyme based on their makeup of face tics and environmental sensitivities. Her tests came back negative, but they wouldn't test her for blood, which is what I really wanted to see about Lyme. But they wouldn't because she had abdominal symptoms which in theory are not Lyme. Such a hotly debated topic that I need to learn more about. The silver lining was this flu caused her chronic symptoms to get better. After 5 months of chronic tics that kept changing and coming back, she has been tic free for a week. In this house, we have bouts of wellness, so I can say she is now well, no chronic or acute illness!

I'm still working on Leo, he has a minor cold that's almost better, and his tics are minor, about 85% better. We are on our way, a remedy that in theory addressed his underlying root illness seems to be helping. I can put him back on his regular remedy soon and see what happens.

So far so good. I'm still waiting for two big things - the Yale writeup and the standardized testing results that should be mailed to us over the next couple of weeks. With these two instruments I should have something to go on to plan for Leo's future support.

As far as I go, I'm busy studying for my homeopathy degree and slowly updating my main website,, in hopes I can finally publish an article I've ignored for a very long time. I just need to do it. I am feeling pretty good about things these days, the kids seem happy which makes mom happy. I can't complain (well, other than about Sarah Palin or the economy crisis).

Sunday, September 14, 2008

NY Times: Strep Throat That Was Lemiere's syndrome

September 14, 2008
The Strep Throat That Wasn't


"I — can't — breathe," the boy gasped. There was panic in his voice and face. He moved restlessly in his hospital bed, tugging at the clear plastic mask covering his nose and mouth. An alarm sounded distantly, alerting the nurses to the boy's distress in the pediatric intensive-care unit of the Cardinal Glennon Children's Medical Center in St. Louis. Before the nurses could respond, the boy's mother replaced the oxygen mask, stroking his face and murmuring reassurances as if he were 7 years old rather than 17.

Dr. Jeremy Garrett, an associate professor of pediatrics at St. Louis University School of Medicine, was worried about the boy. When Garrett first saw him, early that morning, he wondered what this robust man-child was doing in the ward reserved for the very sickest children. At that point, the patient had a fever but otherwise looked well.

Since then, the boy's symptoms had become significantly worse. The amount of oxygen in his blood was terrifyingly low despite getting 100 percent oxygen through the mask covering the lower half of his face. (The air we typically breathe contains about 20 percent oxygen.) And he was breathing rapidly, at nearly three times the normal rate. He had episodes of shuddering, body-wrenching chills — where blanket after blanket couldn't warm him — followed by fevers as high as 105 degrees.

In reviewing the chart, Garrett saw that the boy had been well until six days earlier, when he awoke with a fever and sore throat. He saw his family doctor the next day, who diagnosed a strep throat and started the boy on a five-day course of azithromycin — an antibiotic widely used in part because it is convenient, needing to be taken only once each day. No strep test was done — probably, Garrett figured, because the diagnosis seemed obvious. Despite the antibiotics, the boy continued to spike fevers up to 102 degrees, and the pain and swelling had migrated from his throat to the right side of his neck.

The boy's parents took him to the hospital because something about the way he looked scared them. He wasn't confused, but his responses were slow and strangely deliberate.

2. Investigation

When the family arrived at the emergency department, the boy had a fever and was breathing rapidly. The right side of his neck was tender and slightly red. The rest of the exam was normal. A chest X-rayrevealed a few small patches of white in both lungs — areas that would normally show up as black. Blood tests indicated that the blood cells that fight infection were quite elevated. And most of those cells were immature forms, called bands, suggesting that many of the veteran fighter cells had already been destroyed by a serious infection.

The emergency-department doctors started the boy on two antibiotics for what they thought was probably a pneumonia. Although the patient didn't have much of a cough and the findings on the X-ray didn't seem significant enough to cause a week of fever and shortness of breath, the doctors couldn't find any other abnormality. After the boy's fever went up and his oxygen level went down 12 hours after his admission, Garrett added a third antibiotic and began to wonder what else this might be.

Garrett's concern was that a hidden infection was now seeding his lungs with flecks of infected tissue. That would explain the intermittent fever and patchy image on the chest X-ray. Was this endocarditis, an infection of the valves of the heart? Endocarditis can cause persistent fervers and desseminate infected tissue throughout the body. What about Lemierre's syndrome — a rare infection caused by bacteria that usually start in the tonsils but then invade the vessels of the neck, causing the blood to clot there and peppering the lungs with infected bits? The boy had complained of pain just below the right side of his jaw. Or was this an abscess hidden in the deep recesses of his tonsils? Such a walled-off pocket of infection might not respond to even the most powerful antibiotics.

As Garrett pored over the chart, he noted that each of these possibilities had already been considered. The boy had been seen by an cardiologist, ear, nose and throat specialist and an infectious-disease expert. An echocardiogram — an ultrasound of the heart — showed no sign of infection of his valves. He had an ultrasound of his neck as well to look for an abscess or clot in the vessels there. When none were found, doctors ruled out tonsillar abscess and Lemierre's. Blood cultures still had not given the doctors any clue what the infectious agent might be.

Overnight the boy's breathing continued to worsen. By early the next morning, he could no longer supply his body with the oxygen he needed, and he was put on a ventilator. Simply keeping the boy alive became the doctor's sole focus.

After three difficult days, the team finally was given a clue — though it was nearly missed. Garrett saw the resident looking through some papers in the boy's chart. What's that? he recalls asking. The blood cultures finally grew strange bacteria, the resident responded, but it was probably just contaminant. What was the bacteria? Garrett persisted. Something called Fusobacterium necrophorum. The identification of the bacteria told Garrett all he needed to know. The boy had Lemierre's disease.

The disease was named for Dr. Andre Lemierre, who in 1936 described an infection seen almost exclusively in adolescents and young adults that begins with a sore throat and progresses to a painful and swollen neck. From there, it usually travels to the lungs and sometimes to the brain as well. Before antibiotics, the disease was usually fatal. The widespread use of penicillin to treat sore throats during the 1960s and '70s virtually, if inadvertently, wiped out the disease. But in the last 20 years, Lemierre's has staged something of a comeback. Its reappearance is an unintended consequence of a more cautious use of antibiotics generally and the development of new drugs — like azithromycin, which this boy was given — that are easier to take and can treat strep but also turn out to be far less effective than penicillin against Lemierre's.

3. Resolution

Fusobacterium necrophorum is the most common cause of Lemierre's. The positive culture, along with the pain that moved from the boy's throat to his neck, led Garrett to diagnose the disease, even though the ultrasound had not shown evidence of a clot.

Garrett quickly changed the antibiotics. He chose one that he thought, at this point, would be even more effective than penicillin. Now that they had a diagnosis, maybe they could help this desperately ill young man.

Sometimes, if you just work hard enough to keep a patient alive — to keep the blood circulating and the lungs oxygenating — the body will be able to survive even a vicious illness. These are the miracles brought on by our technological advances. And yet there are times, there are patients, there are diseases in which all you do is simply not enough. The boy's lungs never recovered, and he was never able to breathe without the help of a machine. He died in the I.C.U. three weeks later. His family was at his bedside when he finally slipped away.

When the boy's mother told the doctor back home that her son had died, he cried like a baby, she told me. "I have never lost a patient — like this — completely unexpectedly," the doctor said recently, his voice wavering as he recalled that day. "Never lost one because I missed the diagnosis." He had never even heard of Lemierre's disease before this boy died from it, but he is determined never to miss the diagnosis again. He has changed his practice: now everyone with suspected strep will have a throat culture to check for both strep and Lemierre's. "Maybe that's overkill, and I'll probably end up treating too many of my patients with antibiotics," he added thoughtfully. "But I don't ever want to lose a patient like this again."

Copyright 2008 The New York Times Company

So sad. Kind of makes you think about testing in general. A difficult choice for doctors because there is a cost associated with ordering tests for everyone. Hopefully this boy's death will raise awareness about Lemierre's. It's also hard on doctors that have never seen a "comeback" disease like Lemierre's. I think of whooping cough, even mumps or measles. My daughter had a very mild case of whooping cough that no one picked up but my homeopath. Younger doctors may have never seen a real case of it unless they are from another country. My heart goes out to the family of this boy as well as the doctor.

Saturday, August 30, 2008

Flu Shot and the Elderly

Flu shot does not cut risk of death in elderly

Fri Aug 29, 12:44 pm ET
NEW YORK (Reuters Health) – While influenza vaccination does provide protection against catching the flu, it does not have a major impact on death in the elderly, contrary to what some studies have suggested, a new study suggests.
In prior studies, an impressive 50 percent reduction in death from any cause had been noted in elderly people who got a flu shot, but some researchers were skeptical of this degree of benefit, suggesting that it may have been the result of the "healthy user effect." The new study supports this line of thinking.
The study included more than 700 elderly people, half of whom had gotten a flu shot and half of whom had not. After controlling for a variety of factors that were largely not considered or simply not available in previous studies, the researchers concluded that any death benefit "if present at all, was very small and statistically non-significant and may simply be a healthy-user artifact that they were unable to identify."
"The healthy-user effect," study chief Dr. Sumit Majumdar of the University of Alberta in Edmonton, Canada explained in a statement, "is seen in what doctors often refer to as their 'good' patients -- patients who are well-informed about their health, who exercise regularly, do not smoke or have quit, drink only in moderation, watch what they eat, come in regularly for health maintenance visits and disease screenings, take their medications exactly as prescribed -- and quite religiously get vaccinated each year so as to stay healthy. Such attributes are almost impossible to capture in large scale studies using administrative databases."
"Over the last two decades in the United Sates, even while (flu) vaccination rates among the elderly have increased from 15 to 65 percent, there has been no commensurate decrease in hospital admissions or all-cause mortality," added co-investigator Dr. Dean T. Eurich, who is also with the University of Alberta.
"Further, only about 10 percent of winter-time deaths in the United States are attributable to influenza, thus to suggest that the vaccine can reduce 50 percent of deaths from all causes is implausible in our opinion," he added.
The study involved 352 patients given the vaccine and 352 matched control subjects. Overall, 85 percent of patients were over 64 years of age. Severe pneumonia was seen in 29 percent of patients and 12 percent of the patients died.
Flu vaccination was, in fact, associated with reduced mortality of about 50 percent (8 percent vs. 15 percent mortality in the vaccinated and unvaccinated groups, respectively), and this finding did not change after accounting for age, gender, or co-existing illnesses.
However, after adjusting for other potential confounders, including functional and socioeconomic status, the mortality reduction was weakened and no longer statistically significant.
"Previous studies were likely measuring a benefit not directly attributable to the vaccine itself, but something specific to the individuals who were vaccinated -- a healthy-user benefit or frailty bias," Eurich concluded in a statement.
SOURCE: American Journal of Respiratory and Critical Care Medicine, September 2008.
Copyright © 2008 Reuters Limited.

Very interesting. I wonder why how why now a study like this is funded and highlighted in a traditional medical journal. Maybe because of the ineffectiveness of the flu vaccine last year. As continue to see, it always comes down to economics. Who funded the study, maybe insurance companies since they foot the bill? When did they begin and end the study? Was it data already in existence? Non the less, it's very telling.

The Vaccine Debate

It's no secret that I am one of the many people that believe our vaccine protocol is one of the triggers to the Autism epidemic. Not just Thimerosal, but the entire childhood protocol. People don't read every blog entry I've posted, why would they? That being said, many people will make incorrect correlations or inferences about what my stance is about many topics I post, especially vaccines.

In a nutshell, I feel that ASD, ADHD/ADD, and many other disorders and delays have multiple causative factors and triggers. This list includes genes, our food supply, our environmental pollution, electromagnetic exposure, and other byproducts of modern living. Being human will always be complicated, and I think any one person thinking they have all the answers, especially a one-size-fits all answer, can only be incorrect. I don't believe all vaccines are bad. I have never been anti-vaccine. It's just what we have here today I view as disturbing and very wrong.

I've had the opportunity to know many children on the spectrum, all walking around with their own unique blend of Autism, their unique blend of causative factors, and their unique lifestyle scenario. Regressive form, congenital, what have you.

One day this issue will be behind us. That I know for sure, we just haven't hit rock bottom. At what cost, at what irreversible cost, no one can be certain.

My friend over at shared a great resource with me, called "Key realities about autism, vaccines, vaccine-injury compensation, Thimerosal, and autism-related research" by Paul G. Kinga, PhD and Gary S. Goldmanb, PhD. I couldn't figure out how to convert a PDF into html or something I could link to, so I apologize I don't have a direct way for you to see this research. If you are interested, I'd recommend using whatever research tool you like to find it, like a PubMed.

Anyway, that's "my story and I'm sticking to it", on my blog that is. Ashley

Friday, August 22, 2008

Strep Infection Doesn't Worsen Childhood Tics or OCD Symptoms

Oops, I forgot to post this when it came out....

Strep infection doesn't worsen childhood tics or OCD symptoms
by Will Boggs, MD

2008-06-16 13:29:56 -0400 (Reuters Health)

NEW YORK (Reuters Health) - Streptococcal infection does not cause exacerbations of childhood tics or obsessive-compulsive symptoms, according to a report in the June issue of Pediatrics.

"This study provides further evidence against the use of chronic antibiotic or immune-suppressing therapy to treat these patients, as has been suggested," Dr. Roger Kurlan from University of Rochester School of Medicine, New York told Reuters Health.

"Patients meeting criteria for PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) seem to do fine with standard treatments for their symptoms of tics or obsessive-compulsive disorder (OCD)."

Dr. Kurlan and colleagues sought to determine whether there is a bona fide relationship between antecedent group A beta-hemolytic streptococcal (GABHS) infection and exacerbation of symptoms in 40 children who met the published diagnostic criteria for PANDAS, which included a temporal relationship between the course of illness and GABHS infection. These children were matched with 40 controls, who had OCD or a chronic tic.

Sixty-five clinical exacerbations occurred during the study; of these, 40 episodes occurred in 21 PANDAS children and 25 episodes were seen in 14 control children, the authors report, resulting in exacerbation rates of 0.56 per person-year for PANDAS children and 0.28 per person-year for control subjects.

PANDAS children, however, had more than three-times the GABHS infection rate than control children (0.43 versus 0.13 per person-year), the report indicates, and the higher risk of clinical exacerbation of tics or OCD for PANDAS children did not reach statistical significance.

Only 5 of the 64 total clinical exacerbations of tics and/or OCD occurred within 4 weeks of GABHS infection, and all 5 occurred in PANDAS subjects.

Based on a variety of time intervals and infection classifications, 75% to 92.5% of exacerbations in PANDAS children occurred with no observed evidence of a temporal relationship to GABHS infection, the investigators say.

"Our study results must be interpreted with caution," the researchers note, "because the number of clinical exacerbations and the number of GABHS infections observed were smaller than originally anticipated, particularly in control subjects."

"The most surprising result was that for children meeting criteria for PANDAS, so few of their exacerbations were linked to strep infection," Dr. Kurlan said.

"It remains unclear if the PANDAS hypothesis is true as presented," Dr. Kurlan concluded. In another trial the investigators "found no evidence of immune factors in association with clinical exacerbations in PANDAS cases, casting doubt on the autoimmune hypothesis."

Pediatrics 2008;121:1188-1197.

Copyright Reuters 2008.
This research is very interesting but doesn't convince me of no link. Obviously there IS a link in my own home and with the myriad of children I read about and see with my own eyes day after day in elementary classrooms. My children also do not meet the exact description of PANDAS as outlined by the Am. Academy of Pediatrics. Funny though, I thought the AAP didn't agree to a diagnostic criteria for PANDAS, referring to it only as a theory. Now in this publishing they refer to a criteria. Makes you wonder what is going on here. Bottom line is there are atypical responses to strep too numerous to ignore. Autoimmune reactions to strep, 5ths disease, Lyme, and many other illnesses is very disturbing and warrant immediate funding and attention. This is the future and it's obviously not going away.
I've written more posts on this topic. Also go to my Labels on the right and click on P.A.N.D.A.S. or strep.

Other Things I'm Pissed About

So the FDA went ahead and green lighted farmers to irradiate spinach and lettuce. Nice. Let's put a bandaide on the symptom rather than address the problem of industrialized farming. I am fuming!!!! I guess I'll be making more room in my garden for these veggies because I'm certainly not going to eat grocery store spinach no matter how many times they wash it.

Thursday, August 21, 2008

Vaccine Refusals Fuel Measles Outbreak


Vaccine refusals fuel measles outbreak

Parents refusing to have their children vaccinated against measles have helped drive cases of the illness to their worst levels in a dozen years in the United States, health officials reported on Thursday.

In 2008 alone, 131 cases of measles have been reported, with 15 serious enough to be hospitalized, the Centers for Disease Control and Prevention reported.

Most of those infected were not vaccinated and there is no reason for any cases to occur when vaccines can prevent them, the CDC said in a weekly report on death and diseases.

"Measles can be a severe, life-threatening illness" the CDC's Dr. Anne Schuchat said in a statement. "These cases resulted primarily from failure to vaccinate, many because of philosophical or religious belief."

Only 13 percent of the cases were imported, the CDC said, naming Italy, Switzerland, Belgium, India, Israel, China, Germany, Pakistan, the Philippines, and Russia. "This is the lowest percentage of imported measles cases since 1996," the CDC report reads.

At least 15 patients, including four children younger than 15, were hospitalized, although no one has died, the CDC said.

"In the decade before the measles vaccination program began, an estimated 3 to 4 million persons in the United States were infected each year. Of these, 400 to 500 died, 48,000 were hospitalized, and another 1,000 developed chronic disability from measles encephalitis."

Encephalitis is a life-threatening inflammation of the brain that can be caused by viral infections such as measles.

More than 90 percent of the patients were not vaccinated, the CDC said, had no evidence of having been vaccinated, or were babies too young to have been vaccinated.

"Of the 95 patients eligible for vaccination, 63 were unvaccinated because of their or their parents' philosophical or religious beliefs," the CDC said.

Some religious groups refuse vaccination but many parents have fears that vaccines are unsafe or may cause conditions such as autism -- fears the CDC says are unfounded.

"Increases in the proportion of the population declining vaccination for themselves or their children might lead to large-scale outbreaks in the United States," the CDC said.

Outbreaks of measles are being reported now in Israel, Switzerland, Austria, Italy and Britain among people who are declining the vaccine.

British health officials said in June that measles had again become endemic for the first time since the mid-1990s due to parents declining to get their children vaccinated.

The last serious U.S. outbreak was in 1989-1991, when 55,000 people got measles and 123 died. The CDC said 55 cases of measles were reported in 2006.

Measles kills about 250,000 people a year globally, mostly children in poor nations. The disease causes fever, coughing, irritation of the eyes and a rash. Serious complications include encephalitis and pneumonia that can be fatal.

"Measles knows no borders, but can be prevented for less than one dollar per child in a developing country. We must be steadfast in our efforts to reduce measles cases globally," the Measles Initiative, which includes the American Red Cross, CDC and United Nations agencies, said in a statement.

(Reporting by Maggie Fox; Editing by Michael Kahn)

Copyright © 2008 Reuters Limited.

I am just LOVING this. Really! And not because I want everyone to get measles. Things may finally be coming to a head. Apparently having 1 in 150 kids pop up on the spectrum isn't enough. Human nature, things have to get worse for them to get better. And it always comes down to money. Maybe lots and lots of measles will force change within the child vaccine protocol.

Friday, August 15, 2008

FDA to hold meeting on baby bottle chemical (BPA)

FDA to hold meeting on baby bottle chemical

Fri Aug 15, 3:15 pm ET
WASHINGTON (Reuters) – The U.S. Food and Drug Administration said on Friday it will hold a public meeting next month about the safety of a chemical found in baby bottles and many other products.
Environmental groups say the chemical, bisphenol A, can hurt children and animals. But the FDA and European regulators, as well as the plastics industry, say it is safe.
The National Toxicology Program, part of the U.S. government's National Institutes of Health, has issued a draft report expressing concern that bisphenol A could cause neural and behavioral problems in fetuses, infants and children.
The FDA said its meeting would focus on this.
The chemical, commonly known as BPA, is used in polycarbonate bottles, including water bottles and baby bottles, as well as the lining of cans including infant formula cans.
Environmental and consumer safety groups have pointed to studies that show the chemical can interfere with how the body absorbs the hormone estrogen, which is key to the development of young bodies.
The meeting, set for September 16, will welcome public input, the FDA said.
The agency has posted a draft assessment that says further study of the chemical's safety is badly needed, as there is not enough information now to judge whether people are taking in unsafe levels -- and what those unsafe levels might be.
Democratic U.S. senators in April introduced a bill to ban BPA in children's products. Canada is also moving to ban it.
U.S. states including California, Maryland, Minnesota and Michigan are considering bills to ban or restrict BPA in children's products.
But a scientific panel of the European Food Safety Authority said last month it had looked into how people metabolize BPA and concluded that the tiny amounts of the chemical to which humans are exposed leave the body quickly enough to cause no harm.
Some retailers and manufacturers have said they will stop using the chemical in some products.
(Reporting by Maggie Fox; Editing by Xavier Briand)
Copyright © 2008 Reuters Limited.

In case you hadn't seen this earlier this year....As always, one of the last lines in an FDA related story is the most telling. Yeah, maybe we should look into how people metabolize BPA. Or perhaps NOT metabolize it as with our ASD children and 1 in 6 children today with developmental delays or disorders. Yeah, maybe we SHOULD look into if it's "leaving the body quickly enough to cause no harm." Hmm...well you have these bottles, then you got your chemicals in food, and the toxins we breathe in and touch. Hmm...will one day they realize how big this really is?

Sunday, July 20, 2008

FDA Looking for Recruits

FDA Launches Fellowship Program To Develop Pipeline Of Scientists, Other Professionals

Article Date: 19 Jul 2008

The U.S. Food and Drug Administration (FDA) today announced it is launching a two-year fellowship program aimed at attracting scientists, engineers and health professionals to the agency. The FDA Commissioner's Fellowship Program will provide participants with advanced training in the scientific analysis involved in the safety and regulatory decisions unique to the agency's mission.

"Attracting the best scientists to FDA helps us make timely decisions and give doctors and patients helpful and accurate advice about treatment options. And timely decisions encourage more investment in developing new drugs and better medical devices," said Deputy Secretary of Health and Human Services Tevi D. Troy. "The FDA Commissioner's Fellowship Program will not only bring great fellows in the door, but encourage them to make FDA their career."

I find this completely hilarious. And so telling don't you think? They are not brave enough to make the right decisions by standing up to special interest groups, but are brave enough to say they are in trouble. Trouble indeed for future government which means trouble for us. Even more mistakes, ineptness.

Sunday, June 29, 2008

Back To Yale

Yale contacted us to see if Leo could participate in a couple of longitudinal studies that required children born in 1998 that had made progress. I am not sure what their criteria was for progress, but the invitation to go made me investigate this possibility of going back to ground zero. Cutting to the chase, Leo officially lost his diagnosis by Yale, the evaluators that originally diagnosed him.

But here is the back story...Yale diagnosed Leo at 24 months, and assessed him two other times (at 3 and 5). I am eternally grateful for their comprehensive testing and detailed lengthy reports. Our springboard to direction, and eventually goals and objectives that would be carried out by various therapists for years.

At our last evaluation, Leo (just turning 5) still met the diagnostic criteria for an ASD. I didn't care so much about that, but what may have been uncovered during this evaluation that would help us hone in on therapy. After all, this was our 3rd year of preschool and I wanted to perfect his program so that he could go to elementary school with as little support as possible. Yale gave us his current deficits which validated our direction and our goals. It wasn't until 6 months after that eval. our therapy team said we need to construct a "fading program". In the midst of litigation and getting our house appraised for selling (so we could afford it all), I wasn't capable of believing anything as crazy as no therapy.

But, it indeed happened a year later. Leo was no longer disabled as far as we could tell. There was nothing left to teach him. He still had struggles (see previous posting), but he was happy and learning with no support. I had to let go of those precious daily records provided by our shadows. I had to let go of knowing that Leo was taken care of.

Interestingly, I routinely got emails from parents, therapists, and teachers, asking me if I ever got an official from a doctor. I said no, that I didn't feel I needed that. I learned to trust myself and the therapy team to decide what Leo needed. It bothered me though, that the skeptics, my "fans" didn't believe that Leo was functioning at this level because I am just a mom saying so. It still blows my mind how educated smart people will only believe traditional doctors.

After a little soul searching, I let go of my desire to prove our outcome . A fight I can never win. A person has to be open and accepting that our kids CAN make dramatic progress, can even recover, when they are given what they need. A person has to look beyond their own experience and their "baggage". I entertained it for a couple weeks though, thinking I could drag Leo out of school and spend five thousand dollars on an evaluation that wouldn't serve in his interest. No thanks. I figured I'd save the money for when he really needed it.

So here I was with an invitation for a free evaluation. What's a mom to do? I weighed the pros and cons.

Pros: 1) A free evaluation that may provide us with deficits that are now apparent 4 years later. 2) It's the right thing to do. 3) Because of Leo's anonymity, I can't shout out to the world what has happened with good ABA and the diet. No hocus pocus. Just the stuff you hear about day after day. I knew telling Yale (I filled out a 10 page form just on his therapy schedules) would be a way to shout. Telling them will go a long way. After all, they are doctors.

Cons: 1) P.T.S.S. for me, exhausting for Leo. 2) I may have to prematurely tell Leo about the label of Autism. That there is a name for all the stuff he knows about himself. Our plan was to wait until he needed to know, taking cues from him. 3) I questioned whether it may be too much to ask of Leo. He may miss a Little League game, he may feel it's so much.

After having long talks with him, he said he wanted to do it. So I prepared for our action-packed two days at Yale. Leo liked the fact he'd get an ITunes gift card for his participation. He did the ADOS and the CELF while I did the ADI and the Vineland. I filled out other measurements - parent and behavior. They were fascinating. I must have filled out almost 20 different surveys on top of all the interviewing. It was exhausting. Leo did an EEG, we both did blood tests.

The first day the evaluators (totally 6 in all including our "handler") seemed aloof and wary. I thought, hmm....scientist personalities or what? I insisted on meeting with our initial evaluator, one of the people that originally diagnosed him. I immediately burst into tears after not feeling teary all day. The meeting was a little forced, Leo didn't remember her, and it was hard because I couldn't talk about Leo since he was with us.

The next day seemed a bit better. I ran into that original evaluator and she seemed more available. I was able to take her aside and share the good news about Leo's functioning level and thank her for all that she's done for us. It was a great conversation, I felt I shared what I felt I needed to say, and I felt like I had some closure. At the end of the day, I got an unanticipated "wrap-up" where the lead evaluator went over her observations. She was very warm and friendly and immediately told me Leo no longer meets the diagnostic criteria for an ASD.

I wasn't surprised by the news but it got me teary. It's not all in my mind or something. I was really shocked because she was able to give me this information when I knew the testing was for their research, not specifically for us. She also told me this is so rare to tell a parent this news. That they regularly tell parents their child still has symptoms of Autism. Their behavior all made sense to me now - they didn't BELIEVE me, they just put up with my high-maintenance requests about anonymity and not using the word Autism around Leo. There was a shift in the air - the entire team seemed very happy.

They also noted that Leo appears to have a visual spacial processing deficit. She wasn't exactly sure what it means yet, but was going to process the testing and consult with the other evaluators. This area tested within the normal range, but with approximately a 20 point deviation away from all his other numbers. This led her to believe there may be an issue. Leo may have non-verbal learning disorder. Or it may be a milder deficit. I'll find out soon when they send my a write-up, another pleasant surprise. I love facts and figures (no surprise, right). They'll have 4 assessments to compare. I won't be thrilled if there's a new disability to learn about - I am already busy working on a new degree in Homeopathy and my endless search for my children's facial tics. But I know I have no place to complain.

For now, there's nothing to do about this deficit. She thinks perhaps high school math may be a problem. I love having this information - I can prepare. If any parent can take away any learning from reading this post, look how valuable it is to have regular assessments done. Expensive, hard to find at times, but the pay-off is exponential.