Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Carolyn, I want to encourage you that you can do this. We started the diet in the Philippines. After starting it we realized that the doctors and nurses knew very little. With the help of this group we made many changes, conformed the diet to how they were doing it in the U.S., weaned the meds, created our own menus on the Stanford meal planner etc. We used the doctor for lab work. Over 2 years later on the diet we attribute our success to this group. Rhonda (mom to Shan, age 9) - ael Hello, aël is very bad now, he's got about 20 tonic clonic seizures a night and doesn't fell better a t all during the day...He stops breathing and he's very very scared during and before the seizures he doesn't loose conscience! It's really awful to see him like that suffering! I've just received the Hopkins book and I've check plans meals, it's really nonsense here in france!!!They did a lot of mistakes at hospital and I can understand we haven't got any good effect!!So, I try to do everything by myself! But I don't know how long I'll be able to cop with all these seizures, it's too hard! I've decided to wean meds because it's really worse and worse and here doctors don't want to hear about the weaning of meds, in fact they don't believe in this diet at all!!! I've got the blood controler for ketones , I've check today and Nath is only 1.8 mm ol, What's the better level to be in high ketones during the diet??? Thanks for every info Carolyn, aël's mum, 6 , disabled, epilepsy+++ and unknown disease Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 Carolyn- Just wandering how you and ael are doing. Quote Link to comment Share on other sites More sharing options...
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