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Brand New to Seizures
Wed, 04/08/2015 - 15:15Hi. I was just wanting to share our story and see if anyone can give some advice, or insight that a doctor wouldn't neccessarily think about telling parents that are just having to start dealing with epilepsy.
My son turned 6 March 4th, on Thursday March 12th he had his first tonic-clonic seizure. It scared me to death because I had never seen anything like this and he is the baby of 4. They did EKG, cat scan, blood work, xrays and found nothing. Friday we went to the pediatrician for a follow up and they were referring him to a neurologist. Friday, Saturday and Sunday he was perfectly fine. Monday morning I was walking into the hospital with him to pick up some paperwork for the insurance company and he had another tonic-clonic seizure. The decided to give him keppra and were trying to move up his neuro appointment. The nurse that gave him the keppra must not have known anything about it and cut it in half. Then when he was having trouble swallowing it, went and crushed up some more and gave it to him. I had a follow up with the pediatrician right after we left the ER and very thankful for it because he had a terrible adverse reaction to it. The dr kept him at the office there for over 2 hours watching him. The next week we started noticing lots of absence seizures. So i called a different neurologist in a different city and they were able to get him in right away. He had an EEG and it was clear he has epilepsy. They put him on Depakot sprinkles. After about a week and a half of the depakote he had another tonic-clonic seizure, then the next day had 2 tonic-clonic, so they increased the meds. The very next day he started doing this thing where he involuntarily moves his jaw, rolls his eyes and repeats a word or sound. He had another tonic clonic the next night and then another the following morning. He hasn't had any since, but EVERY single morning he does that strange moving and repeating thing. I was able to capture it on video and send it to our neuro who says now he has mild benign tics. They are so mild he isn't recommending meds yet, but I am just having a hard time believing that he now has tics. Has anyone else ever had anything like this happen. It just seems odd that a perfectly healthy child will have a seizure, start meds and now have a tic. I can't remember what the call his type of epilepsy, but it is generalized and genetic. The doctor also believes that the tic is genetic as well. Maybe I'm just having a hard time excepting this diagnosis as well. BUt I thought I would put it out there and see if anyone at all has had any similar experience. Thanks in advance.
Oh, one other comment... our
Submitted by Anonymous on Thu, 2015-04-09 - 03:07
Oh, one other comment... our child's seizures changed with medications, my child's seizures generally got shorter and milder. Tics could be related to medication but they may not be bad side effects (but the timing is worth pointing out and not minor). We increased medications a lot, there were things impacted by the epilepsy but not seizures like cognition which slowly got worse until one dose increase restored it. It can be really hard to know what really is happening if not much time has passed.