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sdhcbecker

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Hi
My son was diagnosed with complex partial seizures in July . He was put on Keppra (or generic of) and seemed to do well for a couple months. Then he started having many of what we called episodes. He would go to the office at school complaining it was too loud and he didn't feel right. In some cases he would talk confused and just not make much sense. He'd lay down to rest and once home he would sleep hard for upto 4 hours. He hasn't made it through a full day of school since before Thanksgiving. He's now had 2 EEGs (1 regular 1 24 hour) showed normal results. Now Dr is weaning him off meds and saying they aren't sure what's going on. It may possibly not be seizures. Some of the additional things I've witnessed include staring spells, eyes rolling, and rapid eye movement. i am so frustrated and feel like we are back at the beginning. All I know is my son is not the same.
 
has he been seen by a pediatric neuro? If not, i would start there first.
 
Was that the dr that prescribed him the Keppra? If so... Im just going based off of personal experience... but ive been taking the name brand keppra for 14 years now... and it was last month I tried the generic for the first time and had alot of seizures. So I had to be put back on the name brand keppra. It could be that the generic is not helping, and he might need to be switched to the name brand keppra to help control things better.

Could you run this by his ped neuro?
 
That's a great idea. Right now they want to wait and see what happens when he comes off the meds. I'm just so unsure. I feel like they are thinking its not seizures after all this time, but I know my child and this is not him. If its not seizures what is it??
 
Are you scheduled to see the dr again soon? If not, when do they plan to reduce the medication? when you do take him off, keep a close eye on him. For me, last year I was slowly being weaned off Keppra... only going down 250mgs a week from 3000mgs... and I only made it two weeks... going down to 2500mgs before having alot of seizures. I had to be put back to 3000mgs. If its not seizures, I dont know what it would be. There are alot of different drs out there who can help in certain areas. Its just making sure you find the right one.
 
We just saw the ARNP who works with the neurologist. We saw her to get the results from the 24 hour EEG. That's when they decided to wean him off since the EEG was normal. He has been on 750 mg twice a day. We were told to go down to 500 mg twice daily for a week then 250 for a week, then stop. He seemed to respond better at 500 or 625. They increased him because he was having a few episodes at school, but it just got worse at the higher dose. Thanks for your suggestions. I just feel like the rug has been swept out from under me.
 
Hang in there. I know thats easier said than done. But the last thing I want to see if your son get worse. I will be praying that you get the answers you need so he can get better soon!
 
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