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Parents of teenagers with epilepsy
Mon, 02/26/2018 - 07:34Topic: Parents & Caregivers
My 14-year-old daughter was diagnosed with epilepsy about 5 months ago. She has had 6 seizures and is on Lamictal - it has been increased gradually and now she is taking 100mg twice a day.
I feel like I'm on pins constantly worrying that she will have a seizure and hurt herself. She has hurt herself once, hitting her head as she fell, but luckily it wasn't anything serious. I seem to constantly see danger in the world - she could fall down the stairs, fall with a kettle in her hand, fall in front of traffic ... hazards everywhere. I'm doing my best not to pass my fear onto my daughter, but sometimes I can't help myself from standing in front of her on the stairs or pulling her back from the path when waiting to cross the road. I know it's really frustrating for her and I want to help her and not smother her. It doesn't help that she had just gained some independence - being allowed to be alone in the house, go to the shops by herself etc before her diagnosis and naturally she doesn't like losing this independence.
Does anyone who's been through this have any advice for me? I'd like to get to a place where I can sleep again and stop just seeing a world full of danger.
It would also be great to know if there are any groups/forums for teens with epilepsy to talk about their experiences.
I think this was the biggest
Submitted by missicarp on Thu, 2019-02-28 - 08:17
I think this was the biggest struggle for me when my 16 year old daughter was first diagnosed. I lost nights of sleep and stressed every second about what "could" happen to her. It was so much anxiety. After several years, I have realized that there are many more "good" days than seizure days. Out of 4 years, she has only had 5 seizures. I realized I couldn't sit and obsess over everything and had to take the good days as they come and deal with the rough days also. I realized with epilepsy, you cannot control anything! This has been so helpful because my younger daughter was just diagnosed in the last month and I can already feel the difference with how I am dealing with the stress. Good luck! I hope it gets better for you. I figured out the only thing about this that I can control is my response to it all.