I spoke with a woman who runs epilepsy support groups through the Epilepsy Foundation--Chesapeake Region and she set up a support group for parents of epileptic children under age 12. We had our first meeting this week and it was interesting to talk to people with similar experiences. Unfortunately, there were only two other people there (one of whom was the organizer, who is also epileptic) because a lot of parents had childcare issues and couldn't make it.
The organizer was a fascinating woman with such a positive outlook on life in general she can almost knock you over with her energy. She had a successful epilepsy surgery 8 months ago and has been seizure free ever since! We can never hear too many of those stories!
She also had a funny story about coming off one of the drugs she was on...She was 12 years old and started feeling really depressed and would cry about anything after being switched to a new drug. She mentioned it to her parents and when they didn't do much about getting her meds changed, she took action on her own. Because she knew it would be dangerous to stop cold turkey, she researched how to wean herself off the drug and did just that. She managed to hide it from her parents and told her mother a few weeks later in the car--on the way to a follow-up appointment with her doctor!
Smart kids--they'll do you in every time! We might be in trouble!