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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.
Comments
My son is 15, and was
Submitted by larag1028 on Thu, 2018-07-19 - 15:48
My son is 15, and was diagnosed at age 2. Keppra kept him seizure free, and he's been off the Keppra for almost 10 months and has been seizure free off the medicine. We bought the Embrace alert watch, and that has given us all peace of mind for when he is not with us. We haven't left him completely alone since he came off his meds, but his dad & I are very comfortable letting him have his space at home. And we definitely sleep better since it will send us text alerts and phone calls if it detects a seizure. Thankfully, we have only had false alarms with it, but at least those let us know that the alerts work well.
Our 15 year old son had a
Submitted by CoreyY on Fri, 2018-08-03 - 01:27
Our 15 year old son had a seizure two years ago and just got wiend off his medicine over the summer. Unfortunately our soon to be 12 year old had his first seizure a few weeks ago and another one last night. My wife and I are going crazy trying to understand the whole thing. We are trying not to smother our son, but it is hard. We are trying to remind him that it’s not his fault and that we don’t want him to think we don’t trust him. He is a good kid and I think he understands. Is there anyone in the Nashville, TN area that has a child around the same age that would like to meet and chat?
I can't speak as a parent or
Submitted by birdman on Mon, 2018-02-26 - 21:01
I can't speak as a parent or caregiver. But I am a patient who has had seizures all my life, and I appreciated the freedom my parents gave me despite the risky life I lived. Walks alone in the woods, climbing trees, and later using power tools. I don't know what my mother did to cope with the threats and situations she must have worried about. I will ask her how she coped. But I think she focused on the psychological health I enjoyed because of the freedom. Stress and worry can provoke seizures. It's easy for me to say this but maybe if you could quit hovering over her she would be more relaxed and have fewer seizures.