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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: Re: Has anyone had VNS done for
Submitted by tcamargo on Sat, 2007-06-23 - 15:11
My son has partial complex seizures, he would have seizures at least twice a week, he is taking 5 different meds, 16 pills a day. He had the VNS surgery in Feb.of this year and has only had 3 seizures since. He's been seizure free for the past 2 months. It takes a while for the effects of the VNS because they turn up the setting alittle at the follow up visits until they find the right setting. There aren't really any side effects, usually just a shaky voice or cough when it comes on. He will be coming of some of his meds at his next visit. The magnet gives me the feeling of having some control and I love it because anyone who has to watch a loves one seizing knows the feeling of being helpless by wanting to control it and not being able to. I would recommend the VNS to anyone who has tried everthing else with no improvement. I hope you and your daughter will benefit from it too.
Re: Re: Re: Re: Re: Re: Re: Re: Has anyone had VNS done for thei
Submitted by ScottM on Wed, 2007-06-06 - 12:40
Abbygirl, first off I hope your daughter is doing better with the VNS. My daughter has 4 different kinds of seizures that we know of. tonic.clonic, granmal, petite, focal. when we meet with her doctor about the the VNS he gave us two options to place her on a 3rd med or to have the VNS installed. long story short we gave her the option. we of course would have Vetoed it depending on what she told us. after the implant it took about 3-4 wks before we had it turned on. her voice was a little raspy each time they turned it up and for a few days there after. she has not had a granmal seizure in just over 1 year now. her quality of life HAS improved, she still is a little of keel but much better now.if you have any questions about the device just email me and ill get back to you. scott and kellie