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2 1/2 yrs free and the it hits

Mon, 06/16/2014 - 13:03

My daughter started having seizures when she was just barely 2. She is now 13. We have had plenty of ups and downs. Seizure types changing, medications not working, side effects that only other parents here could understand and of course every school year is a new battle. But even with all of that I still considered us lucky. She has been able to have a "Normal" life. ( I hate that term as our normal isnt someone elses normal but its normal for us) She is now 13 almost 14 yrs old. She recently went 2 1/2 yrs without a seizure. We thought we were free and clear. She was coming off medication and happy as could be. Then about 6 wks ago with no warning she started having tonic clonic seizures. She has never had those. She had 6 in 30 mins. So back on meds we started. A week later she had 3 in 15 mins. Time to raise the medicine again. This has been our weekly pattern. Last week on thursday night she had yet another tonic clonic seizure, slept for about two hours and woke up freaked out. She couldn't remember anything except going to bed Wednesday night. An hour later she had an obvious absence seizure. No response, drooling and repeated motion.

At her last neuro visit they mentioned looking at and considering brain surgery as an option. This im not happy about. We have tried in the past Kepra, Trileptal, Zonergran and she is currently on Lamictal and Clorazipate. What other medications have teenagers tried that have the least amount of side effects if I have to change her medications agian?

I am at a lose right now on what she needs. I though when she was younger we had this all figured out and then one night it came crashing in

Comments

That sounds more than

Submitted by Anonymous on Mon, 2014-06-16 - 14:14
That sounds more than stressful, multiplied by everyone! I'm afraid I haven't had the child with seizures go through puberty, handful of years away, still working on going a month between seizures (almost to three weeks, went 20 some days earlier this year, still worried we find control and lose it around puberty).  Sounds like you've got a lot of perspective. Does your daughter have a mix of focal and generalized seizures, or is she just focal seizures (as the absence you mention above sounds like some TLE CP descriptions I've read)?  I'm going to assume surgery would be a backup plan if medication doesn't address this and I really hope you get some good suggestions. If her focus/foci are well identified and found to be in good areas, surgery is something that could dramatically improve quality of life, esp if she would be a good candidate for something like laser ablation which is less invasive, has quicker recovery, and has a better chance of addressing the focal point(s) in one surgery (MRI is used during the process).  Do they think puberty is affecting this or is it just due to weaning her meds? 

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