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Neurologist suggested LTL Epilepsy Surgery for my 6 YO

Fri, 03/30/2007 - 11:17
Sorry so long ... We are just begining the consideration for Epilepsy Surgery. At DD neurology visit yesterday, the neurologist brought up the possibility of surgery. This was her first mention of it. She said ... just want you to begin considering it. Some history : My DD had her first seizure at 6 months and was seizure free for 2 year on Lamictal from 18 months to 3 1/2 years when we weaned her off medication. Five weeks post wean, she had another seizure and had to restart her Lamictal. Unfortunately, it didn't work, even with upping the doses. We have tried adjunctive meds of Trileptal and Keppra. Keppra has worked better and has made her seizures milder but she still has a seizure on average of once a week. For those of you who have had surgery, a few questions for now (I'm sure I will have more). One note: DD started kindergarten this year and has struggled -- she has been diagnosed as developmentally delayed. She typically get things but slower than the other children. Questions: 1. How long does the testing to evaluate take and what is involved? I have read many of the topics and it appears there is surgery involved. Our neurologist has mentioned doing a PET scan to look for a cold spot but we need to get DD seizure free for at least 2 days prior to the test. At this point, we need to get her better under control. If we find a "cold" spot, Katie would then have seizure surgery evaluation -- neurologist mentioned injecting with radioactive dye, weaning drugs to allow seizures to occur and then scanning to see if the same spot was a hot spot during seizure thus pinpointing the area of focus. 2. Assuming she is a candidate, I would assume that she would have surgery in early summer, to recover during this time in order to return to school in the fall. However, I'm not sure we could get it all done and have surgery this summer. We may have to wait until next ... is that a problem to do evaluate this summer and surgery a year later? 3. What is recovery like ... I know this is a loaded question and depends on surgery, etc. but how was it for you and try to relate it to being 6. 4. If you had LTL surgery, where was it done (especially if the patient was a child/adolescent) and do you recommend them? Thanks!

Comments

Re: Re: Neurologist suggested LTL Epilepsy Surgery for my 6 YO

Submitted by cxdavis on Mon, 2007-04-02 - 13:05
Thank you so much for responding and providing so much information. We totally agree with your words of caution to not think about surgery yet ... my DH doesn't even like to talk about it at this point -- it scares both of us but we both agree that we should have an evaluation done to see if she is even a candidate and how good a candidate and then we will look at all our options and consider it. All our DD's MRI have been normal. After being seizure free and weaning and then the seizures returning our pediatric neurologist ordered another MRI -- as she said, given her age -- things may have been too small to see at 18 months but 2 years later the brain has grown a lot and something might be seen but it was normal. I somewhat have answered your final question ... yes, we see a pediatric neurologist in the Charlotte, NC area. I will email you or post if I have additional questions. Thanks again.

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