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Has anyone had VNS done for their child
Wed, 04/11/2007 - 18:13Topic: Surgery and Devices
My daughter Has LGS and her seizures have been very hard to control. When a med helps she eventually becomes immune to it. We've been through all meds. She is currently on Felbamate and the Keto Diet. VNS are our last hope. So our neurologist tells me.
Comments
Re: Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for thei
Submitted by Jorge Lango on Mon, 2007-04-30 - 08:27
My daugther is walking with many difficulties and barely speaking. She was almost 2 weeks unconscious because she entered in a severe myoclonic status epilepticus. 4 of those 15 days she was in coma. We do not know yet is there was brain damage during that period with all those constant-24 hrs seizures ocurring. Now, she is still in the hospital having like 2 seizures a day that last long period of time. She is taking 5 different medications that make her very sleepy. Diazepam is also used everytime the seizures last more than 5 minutes. She has been presenting all kind of seizures.
We are still waiting for the decision of starting the hormonal therapy. She recently came back from the coma so, yes, she was breathing and feeding with tubes, not anymore in the last week. Progress is very minimal and also Drs. are telling us her case is very rare. I this had happen in 8 months: from an active lovely child to her actual condition. Nobody knows the origin of this and why so fast and so severe. "WHY" is always the question in our minds.
Drs. are telling us that her seizure patterns shows a severe mix between Doose and LG syndromes. We do not know nothing, we do not know what to do, where to go or how to escape from this...is so hard to put everything in God's hands when you see your daugther suffering like that. Send you an email latter...Jorge.
Re: Re: Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for
Submitted by Abbygirl on Mon, 2007-04-30 - 15:03
We're definately in the same boat. It's very hard to watch your childs life dwindle to nothing and you can't do anything about it. The drs can't tell us anything either. they don't know why. it hit our daughter very quickly. It is hard cause you don't know what to do but Its so bad that the doctors are running out of options that I figured it was time to quit trusting in myself to find help for Abby or trust the drs and give it all to GOD- he will take care of her no matter what. It's hard but we have to accept GODS plan for our lives wether we like it or not. But I will continue to do everything I can for her and just pray a miracle. Maybe something will work but only if GOD allows it. It breaks my heart everyday. I am so sorry for you I thought there was no other child like Abby because no one has any answers.
Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for their ch
Submitted by Abbygirl on Sun, 2007-04-29 - 09:37
Thanks we'd appreciate that. My E-mail is jpttruckingllc@yahoo.com. Not to be rude but can I ask how your daughter is doing? Ours stopped walking back in Sept when her seizures jumped to 40 daily. And she had to have a feeding tube. We Have her on Felbatol now and the ketodiet now shes down to under 10 daily but she doesn't play and rarely smiles. She has never spoke. Is your daughter even compareable? I've not seen another child so severe. I thought we were the only one.