Can We Take A Poll?

[Guest guest]

,

Would it be too much to ask if we could take an online poll of those

who have run the " Blood Work For Apraxia " per Dr. and

Dr. Marilyn Agin? I know you have an AMAZING memory for the CHERAB

archives and feel that 'the majority' of apraxic kids don't have

allergies or metabolic deficiencies, etc. but I wonder if that's

still the case. I bet many parents who've run the tests in the past

year and a half haven't posted their results, just too busy, and tend

to skim from the sidelines like myself.

It would be interesting to find out how the subgroup percentages

break down:

a) those like Tanner, with no known allergies, no celiac or metabolic

deficiencies;

those like my dtr. , with no known allergies or celiac but

with multiple deficiencies;

c) those like Dr. ' son, with food allergies, asthma and

multiple deficiencies.

I was lucky enough to attend Dr. 's talk in September and she

used the term 'phenotype of a genotype' in describing a complex of

symptoms in some of our kids. I'm bet that understanding these

subgroups and patterns of deficiency will shed some light on the

whole vitamin E/SPEAK discussion-and why it works for some and not

others. Even fish oil is working for a metabolic reason.

And since *this is* the apraxia group with the fish oil/bio-

medical slant, what a perfect place to gather this kind of data :-)!

Even if only 10% of the nearly 8,000 subscribers have run these labs,

and if 50% of those post their results, that would still give us a

large # of profiles to ponder. May even help with the science

someday ;-).

The poll could have a long list of all the common findings plus

a " Yes " , " No " or " Not Tested " option. Ideas for the list: celiac;

food allergies (milk, wheat); vitamin A deficiency; alpha E

deficiency; gamma E deficiency; vit. K deficiency; vitamin D

deficiency; carnitine deficiency; plasma quant amino acids; elevated

lead levels; vitamin B deficiency; fat malabsorption as evidenced by

stool studies. Could also list: autism, asthma, hx. of seizures;

hypotonia; psoriasis; excema; other skin disorders.

I'd suggest running the poll for several weeks and mentioning it

often to capture parents like me, those continually multi-tasking and

not online everyday. Wouldn't that be exciting!? If a large group of

parents could help provide information to the doctors trying to

characterize this disorder? What else could be added to the

checklist? Responds favorably to fish oil? yes, no, NT. Responds

favorably to vitamin E/SPEAK?

Thanks for considering :-)!

Debra in CA

('s Mom-3yo and barely qualifies for SD services after 1 year

of intensive therapy and nutritional support.)