& lin

[Guest guest]

,

I sure hope continues to come out of status and improves! Your other email came in on my computer at work but you were concerned that lin might still be on medication and that might have been a factor in his seizure increase. Its not because he has been off topamax for approx. 3 weeks now. Today lin had just 4 drops, yahoo! Ten on Wed, seven on Thurs and 4 today so the number is decreasing. Wednesday night after we heard about the possible l-carnitine issue and then Patti reminded me about flax oil, we decided to cut out all the extra supplements for now. We are going to continue with the basics, multi-vit, cal-mag-zinc, and our psyillium for constipation but thats it. I have added so many different supplements in the past month that its too difficult to tell what could be working and what could be causing problems. I have been reading too much and I see a study that tells about some children that were put on vitamin E and it decreased seizures in several, well I figure, okay, might as well try vitamin E! And then the other books that I read that recommend different supplements, anyway, I ended up giving him a bunch of different things and I don't know whats what. So we are back to the basics now for a few weeks and see if that makes any difference. Then I will add back one supplement at a time. Thanks so much for your advice and concern at this difficult time for ! You are a very kind and strong person. I hope and pray that will continue to improve.

take care,

Kathy (Mom to lin, 3 1/2, idiopathic generalized epilepsy, med free, keto kid for 2 weeks now, Atkins diet for 6 weeks before that)

Reply-To: ketogenic

Date: Sat, 22 Dec 2001 10:36:02 +1300

To: <ketogenic >

Subject: Re: Re: / Weird symtoms-red eyes

So you attribute red eyes to med toxicity? I do too, but no one seemed that convinced when I questioned it. Anyone else see this?

Have to run back to the hospital, thanx all for the tube replies. We are trying to mimic him eating a normal meal, but instead of his ususal 3 meals per day, we are going to split it up into 4, the last one at about 9 pm. Would this be the norm? We have concocted a egg nog type mixture for the pump, so that we know ourselves what is going in, works out aout 100 mls per feed, so I think this is okay. Please correct me if I'm wrong.

Hill

P.S ; came out of status we think, having an eeg shortly to confirm, but he is sooo drunk, continual midazolam infusion, now the trick is keeping him seizure free (clinically anyway) during a slow wean. Any seizure activity, and the amount goes back up. Wish us luck