Friday, April 23, 2010

What the FDA Says About Vaccines

I found this quite astonishing presentation on the FDA website that talks about "adjuvants" in vaccines. This presentation was created by a special panel full of MDs and PhDs. I reprint here slide 7 so you can just read it for yourself, in all its glory.

Adjuvants: Potential Concerns/Risks
– Potentially antigen specific or non-specific potent immune and inflammatory stimulation
– Increased reactogenicity, local +/-systemic inflammation
– Unclear which, if any, correlate with risk of rare SAEs – Potential role in autoimmunity, short or long term?
– Antigen specific (e.g. neural or cardiac antigens) – Auto-immune/inflamm disease, e.g. SLE, “idiopathic”
– Are there plausible risks to developing immune systems?
– Reassuring observations to date:
• Even strong TLR/PRR signaling likely similar to natural infection (caveat w/ recent UK CD28 agonist trial)
• No strong evidence to date of major problems with compounds being most actively considered – but limited numbers w/ controls, long term active follow-up, or in children

Compare this from the CDC:

Which childhood vaccines contain adjuvants?

The adjuvant aluminum is present in U.S. childhood vaccines that prevent hepatitis A, hepatitis B, diphtheria-tetanus-pertussis (DTaP, Tdap) Haemophilus influenzae type b (Hib), human papillomavirus (HPV) and pneumococcus infection. This adjuvant has been used safely in vaccines for decades.

I think the CDC is just not telling us the whole story.

Saturday, April 3, 2010

The Neck, the neck, the neck -- and a missed diagnosis

When T was a baby I used to say somtimes he looked like a little turtle. His head spent a lot of time tucked down into his chest. The more I look into this issue with nodding and shaking his head, the more astonished I am at how connected all of this stuff is. I just got done reading an astonishing chronicle of the functions of the neck muscles, and I can't believe how they touch on every single area of deficit T has: not just turning the head, but operating the jaw and the tongue (as in for speech!), raising the arms (as in for pointing!), BREATHING (yes, T has respiratory issues) ... according to this website, one of these neck muscles is supposed to turn the head in unison with eye muscles (could this be related to VISUAL PROCESSING ISSUES?) ... these muscles are critical to posture and coordination ...

Of course I knew that postural stability was an issue, and hypotonia was an issue, and that getting T's head up off his chest was an issue ... but I never saw how all of these things work together.

I am astonished. And yet I'm not. when T was a baby I used to worry that he had torticollis (wry neck), because I read about it in a baby book, and sometimes, he reminded me of that. Especially when he was upset he DID seem to twist off to one side or something.

But then there's this: According to this article ("Infantile Reflexes Gone Astray in Autism"), researchers suggest that at least some infants with autism still have "asymmetrical tonic neck reflex" and other reflexes that are supposed to go away. You know what? I already figured that out about T. In fact, I actually told his pediatrician that he seemed not to have outgrown certain reflexes -- including the rooting reflex -- even when he was still 2 years old. i.e., I could stroke his cheek and he would turn toward my hand and open his mouth.

When T was learning to walk, which required A LOT of help, he walked like he was fencing. We thought it was cute. Guess what these researchers describe:

"In another autistic child we studied we found that at 11 months of age the child was beginning to stand and walk. In this child also, the asymmetrical tonic neck reflex was still present so that the child overbalanced and fell in the direction of the outstretched arm."

Yep. That was T. Oh holy cow, that was T.

So ... I'm feeling kind of angry right now. Shouldn't SOMEBODY have figured this out? Shouldn't the DEVELOPMENTAL PEDIATRICIAN who charged us ONE THOUSAND DOLLARS to evaluate T have mentioned this? Shouldn't this man who sits on multiple medical school faculties, who practised at Harvard Medical School, who has decades of experieince, shouldn't he have FRIGGIN' MENTIONED this? Does he even KNOW?

I am pretty ticked off. Oh, the regular pediatrician just kind of acted like ... oh I wouldn't worry about it, he'll probably grow out of it kind of a thing.

These researchers have figured out how to diagnose this problem in very young infants -- we're talking 6 months old. And it would have caught T too. It really would have.

Still Can't Nod (But Tries!)

The twins turned 3 over a month ago and T still can't nod his head. He is ... YAY! ... finally getting the hang of Yes and No, but although he tries, he really CAN'T nod his head. I have been trying to help him do it and it's hard even with me helping him. I'm actually wondering if I should take him to an orthopedic specialist. He somehow picked up how to grimace not long ago, and you should see the poor little guy trying to nod. He just stands there with this grimace on his face and his head moves about a millimeter. Now that he's picked up this grimace, and I actually tell when he's trying to do it, and I'm amazed that he occasionally has tried to nod at me the last couple of days even when I didn't ask him to! (wow!) But the poor guy just can't do it (yet).

He had difficulty learning how to shake his head too. I spent a lot of time physically moving his head back and forth, but once he got it he really loved it and he sometimes even uses this now to express no. (yay!) I guess this is part of the hypotonia.

T had the typical unusually large head for the first 2 years, and I wonder if this just made it too hard for him to move it? Leading to those muscles just not getting used. I wonder too to what extent that the delay in these basic gestures (the head shaking/nodding) contributed to the delay in language?

I don't really know what all nodding might be good for now that he's learned how to say Yes. Maybe I should focus on something else instead. But my instinct tells me that he should be able to nod. I think it somehow be more important that it seems.

Thursday, April 1, 2010

Paleo Diet v Specific Carbohydrate Diet

How astonishing! I finally got around to finding out more about the Specific Carbohydrate Diet, which so many people believe have helped their children with autism symptoms. Imagine my surprise when I discovered that it sounds almost exactly like the Paleolithic Diet! I am still trying to understand the differences among different carbohydrates, but according to the official website of Breaking the Vicious Cycle, which popularized the SCD:

The Specific Carbohydrate Diet™ is biologically correct because it is species appropriate. The allowed foods are mainly those that early man ate before agriculture began. The diet we evolved to eat over millions of years was predominantly one of meat, fish, eggs, vegetables, nuts, low-sugar fruits. Our modern diet including starches, grains, pasta, legumes, and breads has only been consumed for a mere 10,000 years....

How very fascinating.

Our foray into the Paleo Diet got interrrupted by a very fun birthday party, with not-very-paleo birthday cake, so I am putting off final analysis of the results.