Epilepsy surgery

[taft]

I know its a not super common but would love to talk to any parents whose child has had this procedure.

STeph

[Brandon's Mom]

There are a number of different epilepsy surgeries, and many kids who've been through them are represented here on the CN Forum.

As you'll see by my signature, my son Brandon had a hemispherectomy (right side of his brain was removed). Brandon's surgery took place in 1997 and he remained seizure free for 2 years post-op.

[mybaboo]

My daughter had bilateral mapping followed by a partial right-side temporal/parietal resection in May. She's currently seizure free--a miracle we NEVER expected given the severity of her seizure disorder! I'd be happy to share info!

[taft]

Thanks ladies its nice to hear success stories! did you notice an improvement in development after the surgery?? Taft has a lesion on his right frontal lobe his seizures start as a partial there and immediately generalize. His main problems developmentally seem to be left and right frontal lobe based. Expressive speech is his Main problem and then he has problems with multiple steps at times. He also has motor delays/hypotonia he has had since 6 months old so I don't know that is related to the seizures or not since he didn't have clinical seizures until 4 although looking back I saw his first one at about 6 months (absence) but only once in a blue moon

[kathleenandjoe]

mybaboo do share more. .. what did you all try firsy med-wise? Where was this done and why??? What kind of seizures did she have???

This option has been brought up regarding my daughter (also hydro, epilepsy) and I am starting to consider it if she is a candidate.

THanks,
Kathleen

[Brandon's Mom]

We did see a tremendous improvement in Brandon's development after his surgery but I think it was more due to his being off those zombie inducing anti-convulsants than the seizures. As I stated, Brandon only went 2 years without seizures before his returned and we really didn't try putting him back on meds for very long before the neuro and I agreed that the meds just don't work for him and he did much better in school when he wasn't on the medications.

[mybaboo]

Molly has had seizures from birth resulting from a congenital brain malformation. Initially her seizures began as infantile spasms and then evolved at about 10 months old. She was having complex partials, secondary generalized tonics, and a seizure that involved her breathing pattern while sleeping. About 2 months before surgery she also started having "episodes" of inconsolable screaming that turned out to be seizures as well. And on the last 2 days of the grid mapping (we did 10 days), the doc felt that she was seizing anytime she was sleeping.

Molly tried and failed B6 therapy, phenobarbital, keppra, topamax, dilantin, depakene, and ATCH. We saw the best control with phenobarb and dilantin, and then later with phenobarb and depakene.

For the first year of her life we were with a neuro we hated in Nebraska. We did countless EEG's, metabolic tests, etc--we were getting no where. When Molly was 1 we moved to the Chicagoland area and started seeing a ped neuro at the University of Chicago who specializes in difficult to control seizures. Following a 4 day VEEG last October, he announced that he could "see" a possible focus and sent us to Detroit Children's for a PET scan. The PET confirmed a likely focus in the right temporal region.

Given the severity of her seizures, the neuro was estimating that her life expectancy would be another 2 years. He recommended resection and after months of agonizing over it we decided that it was her best option for improved quality of life and a better chance at development.

It was a tough summer for us. Molly spent 3 months in the PICU, instead of the proposed 3 weeks. It took almost 2 months after the surgery before she stopped having seizures and we worked through numerous side effects. And her EEG is still not "normal". Molly will remain on meds (phenobarb and depakene) for at least 1 year before we begin attempting to wean.

But the benefits we're enjoying are a MUCH happier kid who sleeps better at night and even naps in the day (Molly had never napped before), and a healthier kid who is steadily gaining weight and is no longer considered "failure to thrive". We're also noticing improvments in tone, vision, and hearing. We've definitely seen gains in development, although due to her congenital defect we anticipate that Molly will be moderately to severely cognitively impaired.

Whew, that kinda turned into a novel. Kathleen, I hope that in the midst of my ramblings I answered your questions! This was so recent and has made such a huge impact on our entire family that I'm obviously very passionate about it!

Lori