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trileptal
Tue, 08/21/2007 - 10:32Topic: Parents & Caregivers
My daugther Kaitlyn (2) is on Trileptal. She started it on August 4th. The day we started the medicine she started to have a different type of seizure where she did eye fluttering, she did this twice. We normally can't ever tell she is having a seizure and when we can, they are few and far in between. She does have constant activity. The night that we started the Trileptal she wasn't able to fall asleep on her own, and ever since then it's continued. She isn't falling asleep until well after midnight every night and it takes about 2 hrs or more for her to relax enough to finally drift off to sleep. She has been having noticeable seizures everyday, often more than once. I have been calling the neuro everyday since starting the medicine and he hasn't gotten back to me. Someone please help!
Comments
Re: Re: trileptal
Submitted by kaitlynsmom on Tue, 2007-08-21 - 16:59
Koltonsmom,
Thank you for the response. I am so frustrated and not hearing from the neuro is making it worse. I am hesitant about the meds and when there are side effects it just makes me that much more hesitant about them. *Sigh* Thanks for letting me know your experiences with it with your son, that atleast makes me not feel so alone with it all.
Take care.
Emily
Re: Re: Re: trileptal
Submitted by rbenz on Wed, 2007-08-22 - 17:07
Our 10 month old son was on Trileptal alone and started having breakthrough seizures, the meds were not holding him properly. He is now on a combination of Trileptal and Keppra. We have tried over the last 3 weeks to wean him off the trileptal since it was not working on its own and the combination of the two have worked for 6 weeks but he had more breakthrough seizures over the weekend when we were down to 1 ml of Trilep 2x/day, so now the neuro has increased him back to 2ml of each 2x/day. When we increased him from 1 to 2.5 in one day he was completely out of it and now he has been restless sleeping for the past 3 nights. I am not sure when your children started having seizures but do they still sleep in your room? He is in a pack 'n play again in our room. I am scared to put him back in his crib (where he sleeps better) as he had a seizure the other night and made no noise but my husband happened to look on our video monitor and saw him.
Thanks, Rebecca
Re: trileptal
Submitted by koltonsmom on Tue, 2007-08-21 - 16:41
Hi, my son is 13mo. and has been on trileptal since Nov. He was seizure free for 8months and now all of the sudden in May he started having them again and they are worse than before. His doctor says that this is the best med. for his type of seizures and that it doesn't cause much long term effects as some other meds out there. My son also is EXTREMELY restless at night and takes forever to fall asleep. He is going to have a sleep study done in the fall, but I believe its the trileptal. Before, he was on phenobarb as an infant and slept all night. I'm glad though he isn't on that anymore though because he was always in a coma like state, which was horrible. I guess every med is going to have some side effects....I hope this helps you a bit..I can feel your concern and frustration..Good luck to you and your family. Koltonsmom