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need info on benign rolandic epilepsy
Tue, 04/25/2006 - 11:20Topic: Living With Epilepsy - Youth
My daughter was diagnosed with benign rolandic epilepsy at the age of 7. She went seizure free for 18 months and then had clusters of seizures for about 3months totalling 8 in all.
She was on carbatrol for 2 years from the age of 10 to 12 and is has been seizure free for over 4 years until April 8th. She is now 16 years old and she is supposed to be "grown" out of this. She had a sleep deprived EEG on April 21st. Got results and they say it is back. How? Anyone else ever had these troubles. I am trying to get her down to her pediatric neurologist but having trouble with insurance company accepting referrals.
Comments
Re: Re: need info on benign rolandic epilepsy
Submitted by momof3girlies on Sat, 2006-05-20 - 01:32
My 9 year old daughter was also diagnosed with benign rolandic epilepsy 2 1/2 years ago, and has really only had about 1 seizure that we know of in the last year until 2 weeks ago she had a grand mal! I was never so scared. Then, two nights later she had another seizure that was milder. Tonight she was staying with a close friend of ours and I had to go get her she had another one. We are out of school in 1 week and I am going to take her to another neurologist for a second opinion. The only test they did when they diagnosed her was the EEG. I am keeping a log of the seizures and I was curious if anyone had any suggestions, or if anyone has seen a grand mal in their child's sleep.
Re: need info on benign rolandic epilepsy
Submitted by jourdan on Thu, 2009-05-07 - 18:28
My 8 year old daughter was diagnosed with benign rolandic epilepsy yesterday. This was the most scariest thing of my life. I guess she's been having them in her sleep but yesterday she had a nightmare and got in the bed with her dad an she had a grand mal. I was terrified. But God is good and I no she is going to be okay. She had a c-scan and a EEG. The c-scan came back normal but it was the EEG that showed she was having seizure. She is on medicine and will go see her neurologist tomorrow. This is very fresh and new to me so if anyone had comments or anything to say it will appreciated.
Re: need info on benign rolandic epilepsy
Submitted by bradser on Tue, 2006-05-16 - 05:25
my six year old boy was diagnosed with epilepsy afew months ago, we were told by his neurologist that he had 2 types: simple partical and benign rolandic,he told us if he only had benign that he would grow out of it and in most cases he would grow out of it with no need for medication, now his syptoms for benign were drooling of the mouth and slurry words,well this is what i was told,where as his sysptoms for simple partical were alot harder to detect and we were told he was having most of them in his sleep,he to had a sleep deprived e.e.g. which gave us proof of his epilepsy. because of his age i found it harder as he couldnt tell me what was wrong with him all those times he was having a seizure,he only recently told me he use to get "bubbly" feelings in his fingers,which is pins and needles. hes on tegretol for the next 2 years and i am hoping he will have outgrown his epilepsy by then. its very worring when you read stories about people been on medication for 20 years or more. i dont understand why its so hard for you to see a neurologist. its a shame where ever you're from doesnt see your daughters condition as of the utmost importance,its a very worring time for any parent in our situation. i wish you all the best and hope things work out soon, keep us posted!!