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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: Has anyone had VNS done for their child
Submitted by Abbygirl on Thu, 2007-04-26 - 11:10
Hi- it's good to hear from you. We did meet with a surgeon on tuesday and he gave my daughter a 65% chance of having reduced seizures. He's a very qualified DR. I feel very good about it- although I cry every time I think about it. But I have to try anything I can to give Abby back some quality of life. Does't that just suck to be in the position of talking about quality of life and not making her better. I'll Pray Everyday that it helps. I don't know what we will do if there is no improvement. There are quite a few cases of LGS at Columbus Childrens Hospital in OH. I have never met any parents though due to privacy policies. Our surgeon has said he's done many VNS surgeries. we are there so much they are like family. They are great. He said if it doesn't work at first we can turn it off and try a few mo. later- that sometimes it starts working. From what I understand the risk is very little. It breaks my heart that my beautiful girl will have to be scared. But we pray for a miracle that it will work. She is very severe too. She can't play anymore and i haven't seen her laugh or smile in months. We just want our girl back too. Good luck and our prayers are with you.
Re: Re: Re: Re: Re: Re: Has anyone had VNS done for their child
Submitted by Jorge Lango on Fri, 2007-04-27 - 14:02
Thanks for your comments. I think our daugthers are so similar in what they are dealing with. My daugther is going to have 2 months in the hospital. We are also praying for a miracle before going into this steriod therapy or the VNS. Now we have some spiritual help from special people that is trying to help her.
I can not believe all the people we have close to us and to her and how many people is been sentimentally affected. However, I saw my daugther fighting this and dealing with this severe epilepsy with an attitude that I can not describe to you. It is amazing her strenght.
Yes, results with VNS can be good in terms of reducing in some percentage the seizure activity and if the results are not good, they can turn off the unit.
I found some articules from 2005 related the VNS and ACTH therapies in kids with difficult to control epilepsies. I can send them to you by email if you want. My email address is jlango@yahoo.com
We are keeping daugther in our prays. write you latter. Jorge.
Re: Re: Re: Re: Has anyone had VNS done for their child
Submitted by Jorge Lango on Tue, 2007-04-24 - 10:59
Hi, I know today is your appointment with the doctor to see the surgery option for your daugther. I did not found good references with the VNS in kids in the US. Other references metioned a reduction in seizures activities up to 50%. In this same group (surgery options) there are some comments about the VNS in adults with very different results (take a look on those comments). Please, keep me informed about what the doctor told you, please. We are exactly in the same situation apparently. For us, today there is a Neurological Board Meting in Mexico City to decide starting the hormonal therapy on my daugther this week for 2-3 months probably and (if no progress is achieved), go to the VNS. There are very few cases of VNS in kids, doctor told us our daugther case is very rare and severe, so, many people (6-8 doctors) are rigth now fully involve in this. I am really overhelmed about the medical attention she is receiving, but I just want to have my daugther back. Please, keep in touch...and good luck. Jorge.