My son, 14 years, had his first seizures last week, 2 within 24 hours. After EEG, he was diagnosed with Epilepsy. He was prescribed Epilim (sodium valproate), starting from 200mg a day. After some research I found this medication has very bad side effects. We are hesitated to give him that. We still don't believe that he has epilepsy and we will see some specialist. He's been at home since last week and would like to go back school next Monday.
Can anyone share with me your experience with Ep… read more
Hello Michele, and I know this is a difficult time for me to say this, but welcome to you and Ruth. As a patient I had more difficulty than my parents accepting it. Of course, I was in my 20’s when it finally became obvious. But what both your sons need now is support and reassurance, patience and steadfastness. It’s better to trust the neurologist when it comes to meds. As for side effects, they all have them, and it depends upon the individual. I recommend NOT going by the package inset, or research you find on the web. When they talk about side effects there, they have to include ALL recorded side effects, including the 1 in 1000 people.
Please let your sons feel accepted with this diagnosis. It will be easier for them to accept themselves and everything that the feel happening, even the seizures. And Michele, the fact that he had the second seizure in such close proximity is suggestive of a pattern. The most supportive thing you can do right now is to give his meds regularly without missing a dose (I used to make that mistake), and keep a log of all witnessed activity, including unusual twitching and especially unusual behavior, to show the dr. And read the resources here (click on grey box, upper L hand corner), there are posts about juvenile epilepsies and their treatment (although they may have early adult versions, only time will tell)…
I wish both your families the best this holiday season, and keep in touch re: your sons! We—both survivors and families alike, would like to be kept up to date, and post any questions along the way!
I didn’t believe I had epilepsy either at first but consult your doc and try a safer one your on a road to find the right med anyway
What on the eeg made them diagnose epilepsy? Many people have single episodic seizures for different reasons. A shame to start taking loads if medicine at age 14 because if one event. I would definitely go to another doc for second opinion.
Thank you for sharing!