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!

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!

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!

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?

Hepatitis B Vaccine Triples the Risk of Autism in Infant Boys

Posted by: Dr. Mercola

October 08 2009

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

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

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

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

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

Sources:

Age of Autism September 17, 2009

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

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

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

By BENEDICT CAREY

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

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

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

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

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

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

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

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

Take a look at this forum: Latitudes.org

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

Strep link to OCD in Mice

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

August 11, 2009 05:02 PM

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

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

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

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

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

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

Source : Columbia University's Mailman School of Public Health

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

Behavior Analysts, Inc and their Fall Training Series

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

New Workshops and After School Groups

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

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


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

Leo's Standardized Testing Scores from 4th Grade

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

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

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

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

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

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

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

Math: Leo 297/School Avg. 286.

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

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