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Neurologist suggested LTL Epilepsy Surgery for my 6 YO

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: Neurologist suggested LTL Epilepsy Surgery for my 6 YO

I would recommend seeing a pediatric epileptologist, to get a the input of someone with lots of experience in this area. Surgery may or may not be the best thing right now.

To answer your questions:
1.) My epi was fabulous at making the entire process speedy (to lessen financial impact). In February 2006, I had a VEEG. This led to SPECT scans during the VEEG stay. The scans made me a focal point removal candidate. Tests went on. MRI's, PET, intelligence tests, and WADA gave doctors info what was where...and what my abilities were. I then went in for intracranial monitoring before they could make a final decision on whether or not my focus could be safely (and successfully) removed.

I am a little confused by needing to be seizure-free for 2 days prior to PET. I never heard anything about that.The injection of radioactive dye, that's the SPECT scan. It's an attempt to pinpoint the exact area where seizures originate.

2.) Children tend to recover much quicker than adults. If the testing could be sped up (like mine), I would think that your daughter could get through it all before the next school year.

3.) My recovery wasn't easy, and I really cannot imagine a child going through the same. Some people have surgery without a problem, most don't. I just don't know if side effects would be the same for a child. It also depends upon what area is removed, of course.

4.) My surgery was done at Mayo Clinic in Rochester, MN. I was not a child, other than emotionally..lol! I do know that they also do children there, but haven't met any.

Hope that your daughter gets a break soon, best of luck!
Heather

*refractory seizure surgery on left temporal lobe 03/06*

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

Thank you so much for responding. We are just beginning this journey and at this point aren't even sure that it is a path we will follow. However, DH and I typically do a lot of research on whatever the topic before decision are made, especially something this important. Thank you again for all the input and information. We have started a file to keep information so that we can review and digest.

Re: Neurologist suggested LTL Epilepsy Surgery for my 6 YO

Hi Carolyn,
I work in a pediatric epilepsy center. Let me tell you what we do for our pre-surgical work-up for the kids. We have done this on kids from age 2 to 20, so it's possible that DD can do it.
An MRI is needed to see if there is anything structural causing the seizures. Like a tumor or something. A PET scan is done seizure free so that any "cold or hot spots" can be know not to be a recent seizure. We usually do this before weaning off meds. But it can be done after the VEEG stay. A SPECT scan is done in 2 parts. The first is a baseline so the doctors have something to compare the other SPECT to. A radioactive isotope (dye) is injected within the first 20 or so seconds at the start of the seizure to determine the "focus" of the seizure. The dye flows through the blood directly to the brain and higlights the blood flow. Normally, blood is increased at the seizure focus, which is why it's important to get it in at the begining of a seizure. It takes a snapshot of the brain. Then they have up to 5 hours to do an x-ray of the brain to "develop the snapshot." It is completley safe. Just like an MRI. The dye is not harmful to DD or you.
The doctors take all that information plus other seizures that DD needs to have to determine if the seizure is coming from one spot or not. The only invasive part during all this is the IV needed for the dye. If all is done, and you decide not to do surgery, that's ok. The hardest part, honestly, is trying to come up with things to do for the whole time you're there. It gets boring.
Is this a good idea for DD????? If DD is having trouble learning in school, then if the seizures can be stopped, DD should be able to learn better. DD's brain is so young, that it will be able to adapt better than an adults. As an adult, we already made pathways to learn. DD's brain can learn from the start.
Maybe with the information gained, an entire LTL won't be necessary, but there's only one way to find out.
Will it happen over the summer???? Every parent wants that. Unfortunately, there are only so many weeks, and so many beds, and a whole lot of kids. It's not always possible. But the time off school is made up with a healthy brain able to learn without interuption of seizures.
Email me if you have any other questions. Try not to think about surgery just yet. Don't get too ahead of yourself, you'll make your brain hurt. But let me tell you, the younger the kids are, the easier it is for them to recover. Teens have a harder time.
Do you have a pediatric neurologist? If not, where do you live. Maybe I can give you some names.

Jen

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

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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