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Vns possible need help
Wed, 10/03/2007 - 08:40Topic: Complementary Therapies
My Daughter dani was diagnosed with having Tuberous sclerosis which is a condition which she has tumours in the brain causing her to have seziures which are still uncontrolled, the doctors have tried all meds to help her but to no avail, she currently on epilim 25mls only at night and vigabratrin 250mg morning/night. she also has bucccual which is a emergency med to give her when her fit reaches 5 mins which at the min is nearly every day her longest being 12 mins.dani fits any where from 1 to 30 a day with no day off. She had infantile spasms when she was 3 months old and now has what i call jerky and fully body fits.
Because of this the doctors have done a telementry and mri to see if she can have brain surgery to remove her tumours but unfortunatley there are too many to count and also to deep.They also found Dani had a very active brain wave so even when she asleep she is fitting. so the only other opition was the Vns which after reading some of the written words on this on here im now not really wanting my daughter do go through it.
she had learning and communication difficulties so wont be able to tell me if the vns isnt working or hurts etc.
I really dont know what to do as the doctors cannot help her and say they are trying to make her comfortable and that Dani will never be seziure free.
Im really scared now has she has also got 3 tumors in her kidneys which is another part to this condition and she having a rescan to see if these will cause a problem.
are the doctors saying she hasnt long to live as they never will answer this question. Wish someone would be truthful.
All in all im just need some advice as i feel i dont have much of a choice!
thankyou to all that read this and welcome any kind of help as feel very alone.
Comments
Re: Vns possible need help
Submitted by bernardcwe on Wed, 2007-10-03 - 09:12
I am really sad to hear about your daughter's condition. I don't really have any advice for you but:
are the doctors saying she hasnt long to live as they never will answer this question
I don't think doctors will ever say that unless they are 100% certain that there is no chance for a recovery.
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Check out my chart of alternative epilepsy treatments.
Re: Re: Vns possible need help
Submitted by kaladani on Sun, 2007-10-07 - 16:05
kala, mum to Shannon,keenan and Dani who is 5 with TUBEROUS SCLEROSIS.
Thankyou so much for your reply, i think your right they dont say it but i so wish i had some idea as its like watching my daughter die slowly.
All i know is every time she has a bad time its worse then the time before,
so its not getting any better.
Kala
Re: Vns possible need help
Submitted by karelle on Mon, 2008-02-18 - 01:22
Hi, I know this thread is kinda old...but I thought I'd put my experience into the mix.
I have a 6 year old boy with Tuberous Sclerosis who was having multiple seizures a day. He first presented with complex partial seizures at 2 months of age, which is when he was diagnosed. Then by 6 months, he was having Infantile Spasms, which was very successfully treated with Vigabatrin (we never saw another spasm after his first pill). After 4-5 months of being seizure free on Vigabatrin, the complex partial seizures and new tonic seizures arrived.
Anyway! All that to say we finally got his VNS placed when he was 3 years old. He was having seizures about 1-8 times a week up until he was four. Then it seemed we could go a week and see 1 or 2 seizures. Gradually they just faded away, and while we aren't sure of the day of his last seizure...we haven't seen any since right before his fifth birthday.
I have NO idea if it's the VNS, the fact that around five years of age the brain stops growing and changing at such a fast rate, or perhaps a combination. I do know we didn't touch his meds, even to increase them. And he was growing bigger, so in effect his dose was gradually getting smaller.
Even though we don't know for sure it's the VNS that is helping keep his seizures away, we're very glad we had it placed. Even when he was still having seizures, we never once regretted having it done. The surgery was really no big deal, and by the second day he was rolling around on the ground happily playing, right on the incision (yikes), without any complaints.
Anyway, just thought I'd share our experience. I'm so sorry to hear about your daughter. How old is she? Have they considered brain resection/surgery? Where are you located?
Good luck to you and your daughter...I hope you find something to give her some relief from her seizures. I remember those days vividly, and am always scared they'll come back.
Karen
Hi, I know this thread is kinda old...but I thought I'd put my experience into the mix.
I have a 6 year old boy with Tuberous Sclerosis who was having multiple seizures a day. He first presented with complex partial seizures at 2 months of age, which is when he was diagnosed. Then by 6 months, he was having Infantile Spasms, which was very successfully treated with Vigabatrin (we never saw another spasm after his first pill). After 4-5 months of being seizure free on Vigabatrin, the complex partial seizures and new tonic seizures arrived.
Anyway! All that to say we finally got his VNS placed when he was 3 years old. He was having seizures about 1-8 times a week up until he was four. Then it seemed we could go a week and see 1 or 2 seizures. Gradually they just faded away, and while we aren't sure of the day of his last seizure...we haven't seen any since right before his fifth birthday.
I have NO idea if it's the VNS, the fact that around five years of age the brain stops growing and changing at such a fast rate, or perhaps a combination. I do know we didn't touch his meds, even to increase them. And he was growing bigger, so in effect his dose was gradually getting smaller.
Even though we don't know for sure it's the VNS that is helping keep his seizures away, we're very glad we had it placed. Even when he was still having seizures, we never once regretted having it done. The surgery was really no big deal, and by the second day he was rolling around on the ground happily playing, right on the incision (yikes), without any complaints.
Anyway, just thought I'd share our experience. I'm so sorry to hear about your daughter. How old is she? Have they considered brain resection/surgery? Where are you located?
Good luck to you and your daughter...I hope you find something to give her some relief from her seizures. I remember those days vividly, and am always scared they'll come back.
Karen