Dear ToyNera,
I know the anger you feel. It took 5 months for us to get DJ on the diet.
and I know we would have avoided hundreds of seizures had he started the diet
sooner.

I know you will see your son blossom as he becomes seizure free!

Please keep me posted. You can probably purchase the vitamins over the
internet. We grind DJ's down to a powder and then liquify it with water. If
you have trouble getting the vitamin, perhaps we can send you some, It may take
a while to get to you, but we could send a years supply at a time.

It would be our gift to you and Annan. Thelma

toynera <toynera@...> wrote:
Hello Thelma. It's ToyNera from Australia. I spoke with you a few
weeks ago while I was still fighting my neurologist to let him start
the diet. Finally Annan is starting the diet! On wednesday rather
than today, but its finally happening. Annan has unfortunately
started having tonic clonic seizures in the last week though.
Previously he had been having infantile spasms and myoclonic
seizures which both types last for a second or two. Watching him now
have seizures for minutes at a time is scarey. Cant help but feel
angry that it has taken 7 weeks of fighting to start the diet and
the thought that he may never have started having tonic clonic
(grandmal) seizures if he was started on the diet weeks ago. But
anyway, now looking at the future. I tried him on an egg nog with
mct oil yesterday, which he drank well. Had to water it down tho, as
he is still drinking from the bottle. Annan is 15mnths old, but has
global developmental delay, so his development level is between 6-
8mnths. He has just started pushing himself into a sitting position
from a crawling one and is almost sitting alone and almost crawling.
Its so exciting. His development has taken off since we started
weening him off the drugs (which weren't working anyway). Looking
forward to watching my boy (who until recently due to seizures and
drugs looked like he would never sit unassisted, crawl or walk)
become more mobile every day. Thanks for the info about the
vitamins. I'll look for them. Will let you know how we're going over
the next week. Thanks again for your support Thelma. Glad you and DJ
are going so well! Wish us luck!






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