Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 We are on Kepra, Zonegram, and Lamictal, and currently going thru Lamictal withdraw. Our Neurologist just went ahead with the Lamictal withdraw even though seizure control was lost. I think from all the reading, it is almost up to the individual neurologist to decide whether to procede or not. Jackie has been on Kepra and Zonegram for over a year, and when we're done with Lamictal, we tackle that one. She's had no reaction to either one, though I wonder about delayed cognitive ability. But then I think all the drugs affect cognitive ability to some degree or another. Good luck drug weans are scary, but I think so far, worth it. Mother of Jackie age 6, keto since 12/10/01, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 It really could be. Zonegran was so bad for my daughter. Tell your pharmacist you want the write up on Zonegran that came from the manufacturer in the packaging of it. I didn't like what I saw with side effects. Stomach aches, abdominal pain, sores in mouth & throat, loss of appetite. Zonegran may have a site here on the computer. I know it hasn't been tested on children yet. Most of the seizure meds new coming out really haven't gone through extensive testing for children. Try and get as much info as you can on it. For my daughter, it was throwing up after every meal, then during the meal, then she started gagging just seeing food, then refused all together drink & food. On top of it now she was getting it on an empty stomach. I don't know anything about Keppra so I can't give you any advice on it. ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Tammy, Can't help with the meds, not had any of these. Re the weaning, I told our neuro that I had read so much here on the list about better seizure control without meds, that I felt we had to try it. I said I felt the experiences of all the parents here who have actually been through all of this was very valuable, and that I would not be comfortable carrying on until we gave it a go. He agreed, and off we go!!! However, he is still very cautious, and sometimes we do more than he would like, but we just bring up our original argument. Hill in NZ Zonegran & Keppra We just got back from the pediatrician's after a weekend of no appetite and a couple of small vomiting episodes. Thursday night we started Keppra. Friday she ran a fever and the stomach/eating problems began. The pediatrician talked to an associate of our neuro (as he is out today) and they recommended we stop the Keppra. They feel may be having some sort of a systemic reaction to the Keppra. Anyone else experience this with Keppra.Also, her appetite hasn't been the greatest for the past 2 weeks. Just about t 2 weeks ago we restarted Zonegran. Since then, several people have emailed me privately about their troubles with Zonegran. My daughter doesn't swallow pills yet, so we open the capsule and sprinkle it on applesauce. Someone mentioned that the manufacturer states you shouldn't do that as the med is a sulfur-based compound. Could our problems be associated with Zonegran? Any experience with the above meds would be greatly appreciated.Also, how do you convince the docs to wean meds on the diet when we haven't obtained seizure control?The very bizarre thing is, 's seizures have been none to few since she has been sick/starting Keppra!Help,Tammy "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
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