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*

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