Re: Re: When is it time to call it quits??Gretchen

[Guest guest]

Gretchen,

Thanks for your post. We are using Mirlax now and it is working. I just

have to get it right. So far, no diarhhea. THats good. THe GI wants his

stools to be almost like diarhhea for 2 months. I think of Charlie often and

think that he is my inspiration. It took a long time but he did get off and

off

all meds. After this long of time, I still know that the diet may be the

best choice for us to go back to. We are waiting for the results of the tests

and will make a decision in the next couple of weeks.

I have heard the theory of pseudo seizures and that is possible. However,

when they get them on an EEG they always say they are myoclonic " drops " . I

hate those buggers.

My hubby and i got out the seizure videos 2 nights ago and waatched him. He

was sooooo slow back then from the drugs and his seizures look exactly the

same. He has come so far thanks to the diet and I know it saved him. It may

be his only option. I'm glad that he might have it but if he cheats all of

the time, it won't work. He is very strong willed and OCD. Obsessed with

food and trucks.

Anyways

THanks for your thoughts

[Guest guest]

Gretchen,

He is on the Atkins diet. He was on keto from age 3 to 6 and then Atkins

since then. He has never been on a normal diet other than for the couple of

weeks we took him off. He is used to the diet and know what he can and cannot

have but he is hungry alot lately and will cheat any option he gets. He

turns 7 in December. The problem we are having is really chronic contipation

to

the point of infection and developing new food allergies now. THey are

checking his liver, kindey and colon function on October 27. We will decide

what

to do after the tests results are back.

I know in my heart that so far the best seizure control we ever have had is

with the keto diet. It was better than the Atkins diet. He developed so

rapidly and we are seeing a cognitive decline lately with the addtion of meds

and seizures. YUK! Did I mention that I hate this nasty disease.

THanks for your help! I don't know what I would do without this list.

THanks

LEslie