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new: Please help- son with cluster seizures?
Mon, 11/13/2006 - 10:33Topic: New to Epilepsy.com
Hi
I am very concerned about my son.
I am lost in the tremendous volumes of info available to me on this site.
My son developed epilepsy 4 months ago, due to a severe brain injury that he received a year ago.
He has seizures every day. I'm not sure how to classify all of his seizures. I think most of his seizures are simple partial. But he has more involved ones than that, too.
When he's sleeping, he has tonic events.
He has been temporarily blnded from seizures.
There are days that he has many, many seizures. Somewhere from 20 - 100. He thinks that he has more than 100. He becomes incopacitated. Two or three days a week are this way.
How serious is this? He hasn't had grand maul, but I believe he has petit maul or absence seizures at times.
He is being treated by a neurologist.
Do you think I should pursue bringing him to an epilepsy center?
This has been so difficult for me. I would appreciate your help so much.
Comments
Re: new: Please help- son with cluster seizures?
Submitted by Keri Kennedy on Mon, 2006-11-13 - 12:47
Has the Neruolgist given any diagnosis yet?
I hear clusters and instantly think infantile spasms - only because that is my daugther's diagnosis.
From what I've been told the biggest danger with having so many clusters of seizures in a day is that the brain does not get a chance to develop normally. The child doesn't get to learn new skills like they should.
I am not sure what to tell you about seeking an epilepsy center. I live near Duke Hospital, and although there are no epilepsy centers nearby- there are numerous neruolgists who specialize in epilepsy. to me it is nice to have the doctor close and convienet - and not have to make long trips to an epilepsy center. espeically since when you are at the beginning of the journey you see the Dr a LOT
Re: Re: new: Please help- son with cluster seizures?
Submitted by busy mom on Wed, 2006-11-15 - 10:03
Keri, Thanks for your thoughts.
Yesterday, our neurologist referred us to an epilepsy center. I'm waiting to hear from them as to when the appt. will be. (I suppose I'd better leave the phone line open, huh!) It sounds as if Jeff will be admitted to the hospital for a week of in-patient testing.
I'm scared.
Yes, He was diagnosed in the end of august. They caught a seizure on the EEG right away. I guess it's not too hard to catch one when they happen so often.
My son, 16, was a pedestrian who was struck by a semi truck on the highway. (good kid, bright student) He was crushed. His skull was shattered like a hard boiled egg. His face was shattered, and he received severe brain injuries.
By some miracle, he made an amazing recovery.
If you want to know the whole history, Jeff has a website.
http://www.caringbridge.com/visit/jeff_fenwick
Click on the Journal. reverse the order. (They start with the most recent post and go backward in time.)
So now that he has become so incapacitated by these seizures, it is such a frightening thing!
I had better open up the phone line.
Thank you for your responses. Truely.
Re: Re: new: Please help- son with cluster seizures?
Submitted by busy mom on Wed, 2006-11-15 - 09:37
Thank you Barbie. I really appreciate the support. He was healing so well from his accident. T have the set-back from all of the seizures has been pretty tough for us.