Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Hi, My son has been on a combo of Zonegran and Diamox for 1-1/2 years. It seems to really work for him (he was on Diamox alone for about a year before he started having breakthrough seizures). I don't see any perceptible side effects. He's always had learning/processing issues, and still does. He's seizure-free, but still have some subclinical abnormal brain waves. One niggling thing about Zonegran: It can make seizures worse before it makes them better. From the first dose my son's legs would collapse under him several times a day, something he'd never had before. His regular seizures also got worse. It took 2 months to stabilize him. Our neuro wanted us to ride it out, which we did because there were basically no other good options for us (my son had already spent 2-1/2 years on the diet and become very resistant to it at the end). I'm glad we rode it out, but not everyone can do that. Our neuro denied the increased seizures and leg collapsing was the Zonegran, but a friend later put her child briefly on the drug and had the same experience; her neuro will no longer prescribe Zonegran because he believes it's too hard to start it because of the increased seizures. Just our experience FYI. Best of luck, mom to Joe, 10, former keto-kid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Pre-diet, Langan was briefly on a combo of zonegran and lamictal. We hated it. She slept all of the time and her vocalizations really seemed to slow down. I don't know if it was the combo, the zonegran or a coincidence, but we re-named it " zone-a-gran " b/c she was so zoned out during that period. , mom to Langan, almost 18 months old and on keto for 7 weeks zonegram Hi, Our neuro just mentioned zonegram in passing at our daughter appt. on Friday. Does anyone have info. on it. I searched the internet and found a few things, but not much. Are there any side effects such as cognitive difficulty or changes in seizures? We added lamictal a few months back and the dr. never mentioned that a side effect was myoclonic jerking and tremors until we mentioned it to him. I wanted info. before he gets back to me this week. Thanks. Cassandras mom " 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...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Caassandras, We tried Zonegram on (now 22 months) about 4 months ago. It made her very floppy and had trouble swallowing without choking. I feel it did nothing but make her weak. But, remember all kids respond differently to the drugs. Our neuro told us that there weren't any bad side effects, so we gave it a try. We demanded that she be weaned about 2-3 weeks after starting it. Good luck and God bless your little girl. Jim Regitz jim.regitz@... zonegram Hi, Our neuro just mentioned zonegram in passing at our daughter appt. on Friday. Does anyone have info. on it. I searched the internet and found a few things, but not much. Are there any side effects such as cognitive difficulty or changes in seizures? We added lamictal a few months back and the dr. never mentioned that a side effect was myoclonic jerking and tremors until we mentioned it to him. I wanted info. before he gets back to me this week. Thanks. Cassandras mom " 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.