Surgery on a 6 year old - Epilepsy Message Board

Nadia · 03-10-2001, 03:10 PM

My daughter is 6 years old. She was diagnosed with epilepsy at the age of 12 months. She has complex partial seizures, with seizure activity in the left temporal, parietal, frontal and central regions (but especially left frontotemporal). She has been treated with various drugs. Currently she is on Tegretol (being weaned off), Epival and Topamax. She is on a waiting list for surgery, lobectomy specifically. When she does go in for surgery, the procedure will be done in 2 parts. During the first part, she will have subdural electrodes (a grid) placed on her brain to identify the exact area of seizure activity at the beginning of the week. Her brain will be stimulated with mild electrical impulses via the electrodes to identify special areas controlling speech, movement and sensation. The second part consists of the surgery to remove the affected area at the end of the week. If your child has been through a similar experience, I would like to hear from you. My husband and I are concerned about the effects of this type of procedure and the results.

Thank you,

Nadia

megster · 03-10-2001, 03:56 PM

hey there,
i'm 18 and have pretty much the same condition as your daughter. in may of 1998, when i was 16, i had a left temporal lobectomy to remove scar tissue that was causing my seizures. the surgery itself didn't work...but don't worry, that's all individual circumstances and your daughters may be just fine.

i had no effects from the brain surgery that bother me. Results from the post-surgery tests show that i had some language and speech damadge but i'm presently finishing high school and have never had a problem with my language skills. the surgery didn't have any serious effects.

best of luck with your daughter.

Nadia · 03-13-2001, 09:56 AM

HI THERE!
I'M GLAD TO HEAR THAT YOUR SURGERY DIDN'T LEAVE YOU WITH ANY SERIOUS EFFECTS. I AM SORRY, THOUGH, THAT THE SURGERY WAS NOT A SUCCESS. THANKS FOR THE ENCOURAGEMENT AND GOOD LUCK TO YOU

NADIA

eweejoe · 03-15-2001, 05:31 PM

My son has seizures also and I guess you could say I hate the medications that the poor kids have to take to control the seizures, but even worse I hate to hear about one having to have brain surgery. My son did go to school with a girl that had had brain surgery and she lost her language skills (she was 7 when we knew her and she didn't talk) and she was probably on the same cognitive level of a 2 year old. She was 'normal' before surgery AND she still has 30 minute long seizures. I do not know any details of her surgery though. Ok, now to my reason for responding to your question. Check into the Ketogenic Diet at John's Hopkins before you make any decisions about surgery for your daughter. There is no way anyone can tell you what will happen, your daughter may be fine after her surgery. ANYTHING is worth looking into as an option. The diet has more than a 50% success rate at helping people become seizure and medication free. It has been on 20/20 and there was a made-for-tv movie about it that starred Meryl Streep that was based on a true story. Many of the actors in the movie were actual people who had done the diet and were seizure and medication free and some had been for 20+ years. Just felt compelled to inform you of this as one of your options. Oh, by the way, the only reason I don't have my son on the diet is becasue he's autistic too and he doesn't like a vast variety of foods and he would have to eat things on the diet that he wouldn't eat. Otherwise, his name would have been on their waiting list years ago! Best wishes to you and your daughter.