When is it time to call it quits??

[Guest guest]

Hi

Please, I need some help here. I'm really confused about what is going on

with my son.

We are in a big mess with and to be honest. I just don't even

know what is up anymore. I feel like I (or we/he) have lost control.

For those of you that don't know our history, has head drops and

absence seizures. He was having 200 or more daily at this worst. After

trying all meds available, we started him on the diet at 4:1 at Hopkins

4

years ago (our neuro here in Indianapolis didn't believe in the diet). Due to

him getting severly ketotoic, anorexic and loisng toom uch weight because of

depakote toxicity, we had to pull him off the diet and allow him to gain

wieght. 7 months later, we started seeing Dr. Chez in Chicago and he put him

on

the diet again at 4:1 and reduced his depakote. Again, he got anorexic and

highly ketotic. So, we went down to 2:5 for awhile and then to 2:1 ratio.

He immediately tolerated the lower ratio and had seizure control. We tried to

wean the depakote completely on this ratio and always had trouble when we

got down to the last 2. Looking back, I wish we would have rode out the wean

to give him the chance withoutmeds. He was on 2:1 for 2 years and finally

last November 2003 had enough of the diet. He started digging in the trash and

sneaking food and coming very violent about food. His seizures then came

back a little bit (not near like they were). We took him to Cleveland clinic

for a 2nd opinion due to Dr. Chez being so expensive and they took him off all

meds for 7 days in the hospital and said his EEg was nroaml and he was cured.

Keep in mind, we saw him having seizures in the waiting room prior to EEg

being hooked up. They said even if the seizures would return, he did not need

to be on the diet and should be able to get control with meds.

Well, one month later, we took him off the diet and meds and he lasted about

3 weeks without seizures. It was great but then they came back slowly. Dr.

Chez did another EEG and confirmed that his EEG was abnormal again. So he

started him on the Atkins diet. He siad he thought he was tapped out on the

keto diet and not growing etc. He also added Felbatol. Well, he did good for

about 6 months and then this past summer he became really constipated and it

came to a head this past July when he ended up nearly obstructed and really

constipated. We started a high dosage Miralax regimen which gave him

diarrhea bad and his seizures have gotten increasingly worse. Its been a mess

and

we've tried many things to get him " normal " with his bowels but can't seem to

get it right. He has been on Flagyl for bacteria and got better for about a

week with seizures. Now, ther are here again and he has a rash which is

called Mollousum which comes from his immune system being suppressed. Common in

HIV patients. He had several head drops the last 2 days agian since the rash

started.

My mom instinct tells me that his body is saying " I've had enough of this

diet " but my head knows that his options are limited with what else is out there

for him. He is having a coloncopy and endoscopy and 2 day video eeg which

I don't really care about any more. Yes, we know he is having seizures. He

is back on depakote also and we increased it yesterday.

He is still on the Atkins diet and is starving all of the time. He begs for

food constantly. He is having many seizures (head drops). I don't think he

will do the keto diet anymore. He is a very strong willed child and he

loves food. Its an obsession. Its awful.

Any thoughts? Red flags? Ideas? Please I welcome any input.

Thanks

mom to 6, 4 and baby boy due in Feb.