Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
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.
They did EKG, cat scan,
Submitted by just_joe on Wed, 2015-04-08 - 18:53
They did EKG, cat scan, blood work, xrays and found nothing. The nurse that gave him the keppra must not have known anything about it and cut it in half He had an EEG and it was clear he has epilepsy. 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.I know it is hard for you to understand but I know you will after some time. I might suggest you start with epilepsy 101 then go to types of seizures follow that with types of epilepsy. Also read triggers. You also need to understand that each persons seizure is different. The symptoms may be the same but there are some things that are different. By reading those it may help you understand a little more and you might even see that you might not have notices some seizures he has had in the past,As for his meds they do work. But unless the doctor has given you special instructions follow the dosage and times they need to be taken. If 2 times a day then those times need to be 12 hours apart. I take mine at 8 am and pm. If taken 7 am and 9 pm those 2 hours can cause breakthrough seizures.I hope this helpsJoe