Re: less advice, more information, may be maddening and may be wrong....

[Guest guest]

Be skeptical about my theory.....

Theory (the may be maddening and may be wrong part)

I read somewhere that the National Academy of Pediatrics is

recommending to doctors to NOT give a diagnosis of autism to children

under the age of 5. I don't know where I got this information, and am

not sure if I can find out if this is the truth. If it is, I would

expect all developmental pediatricians and regular pediatricians take

a " wait and see " stance. That doesn't mean that you have to wait to

access services, it just means it may take longer to get someone to

sign off on the 299.00 ICD-9 code/autism diagnosis.

Facts

Last year, I asked Dr. Rubin if the developmental pediatrics at

Marcus Center were any better or any worse than choosing to see him in

his developmental pediatrics private pay at the Windsor Road location.

He told me that they had an excellent doctor, Dr. Pakula, who was

stellar at understanding symptoms related to the spectrum and finding

the right medication to alleviate symptoms. We still see Dr. Rubin as a

benchmark once a year (out of pocket) since his practice really knows

my kids.

I tried the GF diet with my kids at age 3 and got no results. After two

weeks of frustration, and limited access to support, I gave up. I tried

again this summer, and with the combination of removal of adenoids and

tonsils, GF diet, swim lessons to increase demand on bilateral

activity, and an awesome music therapist, saw a 10 point gain in

expressive and 10 point gain in receptive communication within a 5

month period. It was a lot easier to accomplish when the kids were 6

than when they were three.

++++

I really like Carmen's comment about not dissuading anyone from trying

anything. The Autism Research Institute reported that GFCF diets work

in over 50% of cases reported to them - so you have a one in two chance

that it will work when you try it. Come to think of it, that's my

success rate every time I join weight watchers.

So I guess what I really want to say is as a parent, it's up to you to

be the head project manager/case manager/advocate/champion for your

child. During opportunities to wait for openings for the right doctor,

you have the time to research, try, and document things that work and

don't work. Autism is still not the kind of condition, like cancer,

diabetes, or the common cold, where the doctor can take sufficient lead

to guide you to the best possible outcome - YOU the parent, have to

lead the doctor to understand what direction you want to take and how

can THEY support success in that aspect of the journey.

Raissa

Nothing ventured, nothing gained. Autism is NOT a spectator sport.

If you're willing to get involved, check out the roadmap at

www.parenttoparentofga.org.