Every doctor touted Dilantin as the cure all to me and my seizure rate went up on Dilantin, even after receiving it via IV in the hospital. My seizure rate went down after the introduction of Depakote and Gabapentin and since I quit the Dilantin on my own I have been seizure free. Doctors tell me I was nuts for quitting the Dilantin but then can’t explain why I have been seizure free since I did.
I still though can’t go anywhere on my own without the fear of having a seizure and getting hurt or robbed or worse. Of course I can’t drive so I get around on public transportation when I have too. I wear a medical necklace and have ID in my wallet and luckily have only ever had 1 seizure out in public and luckily for me it was around people who helped and called 911.
I’m glad you are not having more seizures, but I do know it affects your life in so many ways, even when you are free of them, you never know when it might happen again.
The doctors really don’t know much about seizures. I’m not looking forward to my daughter being an adult. At least now, I set the rules.
I will say she is being very good about everything. She doesn’t have anything with caffiene or artificial sweetners, and she checkes the ingredient list to make sure before she tries something new. She wouldn’t even eat a little coffee ice cream at a friends birthday part.
She never complains about having someone with her at all times. We did have a baby monitor in her room, and she never complained about that.
I hope that the doctors gain better seizure treatments for you and for everyone with seizures.