Friday, August 20, 2010

Father of ABA, Dr. Lovaas, Passes

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


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

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

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

Rest in Peace Ivar Lovaas

Thursday, July 15, 2010

Saving Sammy

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

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

The fear and hesitation in the doctor voice made me sad, but I am glad she did put herself out there. Rare for anyone in this business of "new" illnesses caused by bacteria or viruses that were once thought benign such as Lyme, Bartonella, Babesia, Mycoplasma, and last but not least, Strep.
I dream of the day that doctors refer to dynamic, updated, guidelines that reflect the children that reside in our classrooms and in our homes. Our generation.

Monday, June 28, 2010

NY Times: Childhood Combo. Vax and Seizure Risk


The New York Times
  • June 28, 2010

    Childhood: Combination Vaccine and Seizure Risk

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

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

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

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

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

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

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

    MORE IN RESEARCH (6 OF 24 ARTICLES)

    Heart Risks Seen in Diabetes Medicine

    Read More »


    FDA Urging Limited Antibiotics In Meat


    FDA urging meat producers to limit antibiotics given to animals

    ap
    , On Monday June 28, 2010, 11:08 am EDT

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

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

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

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

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

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

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

    Friday, March 19, 2010

    Can Strep Throat Lead to Behavior Problems?

    Can Strep Throat Lead to Behavior Problems?

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

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

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

    Q.

    RS from N.J. writes:

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

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

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

    Q.

    Bethany Brinton from Salt Lake City asks:

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

    A.

    Dr. King and Dr. Leckman respond:

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

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

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

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

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

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

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

    Q.

    mlw from Brooklyn asks:

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

    A.

    Dr. King and Dr. Leckman respond:

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

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

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



    Thursday, March 04, 2010

    Guidelines for Choosing a BCBA

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

    Friday, February 12, 2010

    DSM-5 Update

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

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

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

    Friday, February 05, 2010

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

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

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

    Tuesday, February 02, 2010

    Autism Rise in Los Angeles

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

    Sunday, January 31, 2010

    Kettleman City, CA and Birth Defects

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


    They own us.


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

    Tuesday, January 26, 2010

    Rifelabs.com Dave Nelson passes away

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


    Friday, January 15, 2010

    So Much Newness!

    So much newness! A new house, school, community. And Leo is 11!
    The kids LOVE it here, although they miss their friends. My biggest concern, of COURSE, was my big boy. Would I undo all that we've done? We moved largely to be out of a tick endemic area. Which kid is most important? Upsetting the apple cart vs. having a cleaner environment for my daughter?
    Fortunately he seems to be thriving, also demonstrating there are no holes in his programming and that his recovery is real. Out of his comfort zone of the same kids, school, neighborhood, and community. It amazes me how he has the confidence and adaptive skills to adjust to EVERYTHING being new.
    The cleaner environment seems to help HIM in addition to Sydney, as he does struggle with his bacterial load, including a lyme co-infection Mycoplasma fermentans. He is asymptomatic about 95% of the time (tic-free, headache free).
    Leo continues to love sports, loves playing basketball and baseball. Still amazes me he can do it and CHOOSES it after he had such a hypersensitivity in his face for everything, let alone flying objects. He is actually good at it! And again, with completely different kids in a different league/culture. Another adaptation.
    Leo had a very successful class birthday party (just the boys) at our local gym. I can't believe he is 11 and that puberty is around the corner. Our next milestone. Grandma visited and so his birthday celebration was big in spite of being in transition.
    We are still in LYME HELL with my 8 yr old daughter, but she has made progress this past year. We are beginning year 2 of her treatment. My goal is that she is pain-free by year 3 - seems to be a fair marker. So, I spend all day doing the things you know i am doing as a parent with a special needs child.
    The kids play every day with the neighbor kids in our new cul de sac. It's so surreal to me, how happy they are running around, knocking on doors. Going back and forth between houses. A really really nice group of kids (so far, I am in the honeymoon phase!)
    The kids have their own room, and as you can imagine they relish their new TURF. It's very cute how they are coming into their own as they mature.
    I unpacked my homeopathic school books - I hope to start studying as things calm down settling into the new house. It'll wax and wane as Sydney's needs vary.
    All in all I am happy with the new year, and hopeful that Leo will continue to thrive and that Sydney continues making progress toward recovery.

    Wednesday, January 13, 2010

    Kid's Jewelry

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

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

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

    Monday, November 23, 2009

    Age of Autism Blog

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

    Wednesday, November 11, 2009

    Things I'm Grateful For

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

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

    So here goes...painful as it is:

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

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

    So that's it! I did it!


    Tuesday, November 10, 2009

    Nutrition Facts for a Banana

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

    Sunday, October 11, 2009

    New Autism Numbers

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

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

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

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

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

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

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

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

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

    Thursday, October 08, 2009

    Hepatitis B Vaccine Triples the Risk of Autism in Infant Boys

    Posted by: Dr. Mercola
    October 08 2009

    hepatitis B, hep b vaccine, vaccines, mercury, thimerosal, aluminum, adjuvants, autismA new study has shown that giving Hepatitis B vaccine to newborn baby boys more than triples their risk of developing an autism spectrum disorder.

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

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

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

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

    Sources:

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

    Tuesday, October 06, 2009

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


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

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

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

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

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

    Huh. Funny how this big news just didn't get me all fired up. We've known this is rising and we all talk about it constantly. We live it, but amongst ourselves. Until a friend got me thinking about this "news", I figured I should post something from an acceptable media outlet like the New York Times. Reminds me of the feeling I had watching Autism Speaks or Jenny McCarthy get plastered all over the news the last few years. A little invasive into my personal world. Especially the recovery part, it made me a bit paranoid. A good invasion of course!
    It's "the" talk for now. What will, if anything, people DO about it? What will change? 1 in 150 wasn't rock bottom. Will 1 in 94 be?

    Wednesday, September 30, 2009

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

    Take a look at this forum: Latitudes.org

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