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For those of us who have children with seizures....

Posted by on Sep. 18, 2013 at 10:30 PM
  • 7 Replies

Elena's seizures are back again!! Ughh!! So does anyone have experience with Tegretol? Thats going to be the next med to try...It sucks to keep adding medications to the "failed" list and THAT list keeps getting longer. She's currently on Keppra and Onfi. Phenobarbitol didn't work and Dilantin made her stop breathing (found out she was allergic to that and Phosphenytoin) So when we add the Tegretol one of these meds are gonna be weaned off. I'm just so exhausted with these constant med changes and finding the right cocktail for her!!



Sorry..kind of vented a little bit..

by on Sep. 18, 2013 at 10:30 PM
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Replies (1-7):
mandee1503
by Amanda on Sep. 19, 2013 at 12:19 AM

Jacob only takes keppra. So here's a bump! 

Elyssa414
by Elyssa on Sep. 19, 2013 at 12:37 AM
1 mom liked this
I don't think we've ever done tegratol. I'm sorry. We did that for years! Have they tried alternative treatments like Atkins for seizures or a VNS?
MauiStylinMommy
by Member on Sep. 19, 2013 at 12:56 AM

Thanks ladies! No we haven't tried anything else yet..she's apparently still to young for a VNS? She's 3. We've talked about trying the ketogenic diet but because of her current diagnosis for renal tubular acidosis they are hesistant to try it. Which I understand, I'm hesitant on it also. Well, one thing is for sure..She's always smiling!!

darbyakeep45
by Darby on Sep. 19, 2013 at 6:14 AM
Hugs mama! My son is 5 years old and has Gelastric Seizures...he started out on Trileptal and that didn't work well for him. So now he's on Topamax...seems to be working well so far. Good luck!
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DDDaysh
by Bronze Member on Sep. 19, 2013 at 11:35 AM

I was personally on Tegretol for a while as a teenager.  It didn't work for me though.  My little brother growing up was on Tegretol for years.  I am not sure what he was taking it for though, because it wasn't seizures.  He had FAS, so I'm assuming it was for some other neurological issue, but specifically what I'm not sure.  

Koltie6
by Member on Sep. 19, 2013 at 4:36 PM
My son is 6 . He was on Keppra for two years and it stopped working. They kept increasing the dosage and it actually started causing seizures at each dose. We started seeing a specialist who ran many test to detect underlying causes. We added Leucovorin which is folinic acid. We changed seizure meds to Zonegran which is an older med and he has not had a seizure in over a year.
Linagma03
by Gold Member on Sep. 19, 2013 at 11:22 PM

Lina takes Keppra & Trileptol. So far I've been lucky and this combo is working great. I wish I had some words to make this better for you. All I can tell you is good luck. I really hope that it gets figured out really soon for you and her. 

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