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Hi, new to the circle of moms

Fran - posted on 10/15/2009 ( 1 mom has responded )

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Hi everyone, i am a mother of a soon to be fifteen year old boy who has been having seizures since he was six. this has been a very hard road. i was told he had a stroke in utero, that turned out to be untrue when he had brain surgery in 07. the doctors we saw thought they had foculized the seizure area. they were wrong. my son has tried tegretol, lamictal, keppra, zonegran, dilantin to name a few. he is currently taking depakote, phenybarbitol, felbatol, banzel, clonazepam, and seroquel to combat the lack of sleep and attitude. of course i guess i would have attitude as well taking so many meds. also did i mention vns. it did not work was a big disappointment. the docs r saying to wait and try the new implant like vns that sits directly on the brain. has anyone heard of this, if so can i get some opinions. it wont be available for a year or so i believe. any help is so greatly appreciated. sometimes i feel so alone. thank you very much.

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Deiliana - posted on 10/15/2009

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Her neurologist told us the night b4 her surgery that he found a area on her right, we have been told for years that they thought it was left so after 5 yrs of trying to locate the "spot" they finally did May of this year. In the left front temporal lobe. well after they put in grids they saw they were also coming from the temporal lobe a lwer aera than the beginning spot, but after doing another test it appeared the tonic clonic seizures were coming from the left frnt temporal lobe so thats where they removed a area. the night b4 he comes in to tell me that he also found an area on the rgt side of the brain. tehe 1st we have ever heard of this. My daughter is 12 but, has a IQ of a 3 yr old her socialilzing has got to be higher than that ... She also has attitude. I definetly beilev its the meds too. I feel you on feeling alone, u know when a kid has a cold we can make it better but, when a seizure hits I feel helpless!!! I feel so bad knowing there isnt anything I can do to make it stop or make her feel better. My daughter has been extremely emotional since having her surgery..

I hate knowing your son went through that surgery and he still has seizures bcuz they didnt have the focus!!!!!!!!!!!!! Thats horrible!!! Her neurologist wanted soo bad for us to try the vns and I refused. I just didnt see where it would really work for her type seizures in the end I have read alot of parents are saying it wasnt helpful. As crazy sas it sounds one of the biggest factors that turn me down to it was the possiblity of it making ur vocal cords and throat hurt. My daughter doesn't watch Tv play video games play with toys or anything like that, her one thing she enjoys is singing. That makes her happy and when I wasnt sure the vns would even work and it could hurt her throat to where she wouldnt feel comfortable singing I said no. Granted we tryed the Ketogenic Diet for 2 years with no releif of seizures either. We have also tried alot of meds..u get to feeling as though ur childs a genie pig.

She has had one seizure since her surgery it was very small. We can cope with this if that is all shes going to have. They said it is highly for her to have more since there were 2 more locations, but they don't know everything if they did they would of come up with a cure by now!!!! Take care and sorry this was so long.

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