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Posted by Liz R on September 19, 2000 at 10:29:17:

In Reply to: Remark of improvement from Dr. of Grandson-Longish posted by Grandma Peg on September 17, 2000 at 16:40:13:

: 'We' have made 3 trips to Riley Children's Hops. in Indianapolis this month to see the regular Dr's, re; regular visit. The neurologist said she thought our grandson was 100% different - improved from when she last saw him, 3 months ago. He is gfcf plus supplements. The 2nd. trip, the PT dept. made wdges for his shoes, he's almost walking on his ankles and the other Dr's around his reg. Ped. Dr. said nothing could be done, wedges weren't advised, etc. but seems the 'specialists' at Riley felt differently. It improved his walking immiediately. There are ligament and muscle stretching excercises that are to also be done in addition to wedges. Then, we saw molecular genetics. They said every test that could be done has been done and all the reports are 'normal'. Then they thought of one more...a sort of reverse search one, by a drop of blood, they're going to look for any gene deletions. The NP who takes the notes and does the pre-interview said she had read all the printouts I'd sent and proceeded to - again - warn us about info from the internet, even if it's from researchers because these items hadn't been subjected to 'other tests', 'peer review' and submitted to journals, etc. The usual hype. I didn't have time to argue or start an argument, I was struck by the idea that she was referring to the AMA, CDC, FDA and the Journal of AMA. IMO, because she - or they - hadn't heard, read or received approvals from AMA, the info shouldn't be considered. Also, she quietly slammed the gfcf diet by saying she'd read the web sites, etc., and did I know that it was suggested that if after 6 months and no improvement was seen it might as well be dropped..? I let that one go too in light of what the neurologist in their complex had said a week ago. The info from Reicheilt, who advanced the diet theories suggests a year anyway because of the difficulty in gluten removal. The info's we received from them just re-inforced the idea in me that THEY - the Riley or other AMA Expert's reports - should only be trusted so far...also. And because we live with the kids daily, we don't often see the subtle changes, we just accept them and keep on with the therapies. Fortunatly, our daughter keeps a daily log on a floppy disc, so they made a copy. People remember This, a Daily Log is invaluable to dianosticians, no matter how it's recorded, hand or computer. And tests that are done on the kids which come back as being in a 'normal' range aren't always suffecient for the infinite type of diagnosis these kids might need, according to Dr. Shaw who wrote that book, Biological Treatment for Autism and PDD'. The grandson has been on this diet plus for 1-1/2 years. He's changing but no sudden miracles. So, if all the tests molecular genetics have done on him are in the 'normal' range, what the heck is the problem? Even brain scans were normal. They don't know and said so. They advised us to return in 2 years to see if 'this' develops into 'something else'...Wel, at least they're going to mail copies of all the lab & test results to us as I complained that no one tells us Anything... in detail. So we'll have their tests for comparison to any tests done thru' 'alternative therapies'. Grandma Peg

Grandma Peg,

I'm so glad things are going well for your grandson. If the CDC isn't going to perform any large scale independent studies, then we are going to have to do the research ourselves. It can be infuriating that the "experts" won't give any practical advice for treatments and scold us for what we are trying.
The log is a good idea, because sometimes changes are subtle. For example, Joe still isn't very verbal, but he is playing with his siblings and his cousins and this isn't something he didn't do until after we started the diet.
Also, Joe's diet has raised some awareness in my family. My nephew received his MMR shot in May and has been starting to show signs of milk intolerance. My sister-in-law has taken him off milk and I don't think she would have questioned milk if it weren't Joe being on the diet.

God Bless,

Liz R

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