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My brother's nephew has epilepsy. Apparently, he's had it for awhile, but for a few years, the seizures were passive. He's 4 now.
They recently flew him to the Cleveland Clinic to have surgery, but when he got there, the seizures stopped. They stopped giving him the medication and he had a couple of mild seizures but they were not localized and it was decided that surgery wasn't the best option at this time.
Now, my husband's boss has a daughter who had epilepsy. Hers was really bad and they took out 2/3 of one half of her brain at the Mayo Clinic. She was still having massive seizures so they took her to the Children's Hospital in St. Paul. They drove up and when she got there, she stopped having seizures. They took her off her meds and she had a couple of mild seizures and they weren't localized so they decided not to remove the last third of that half of her brain.
Since then, she's been off her meds and has only a couple of mild seizures a year, but the parents know that they could come back at anytime.
My brother's nephew parents are thinking about putting him on a ketogenic diet, which they've heard might help.
I have some questions. Is it common for children to have massive seizures at home and then when brought in for testing have them stop? Could it have something to do with them being over-medicated and while titrating down for the tests, the seizures stop naturally? Or maybe they aren't titrating down, but in the excitement/rush/nervousness of the impending trip/surgery, a dose or two is forgotten.
At first, I wondered if it had to do with flying, but since one flew and one drove, I don't think it could be that. But I think it's weird that I know exactly two children with epilepsy and both of them had their seizures stop when they went in for surgery.
Anyone have any experience with this or know anything about it?
Posts: 9871 | Registered: Aug 2001
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quote:My brother's nephew parents are thinking about putting him on a ketogenic diet, which they've heard might help.
Are they going to do this in conjuction with the testing going on at Stanford Medical Centers Lucile Packard Children's Hospital ( Linky ) which seems to be having very good results with this? Or are they just doing it on their own?
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