04/21/2024
For anyone new to this page…
I’ve created this page as a way to reach out and share knowledge, information, and experiences for parents caring for children with Epilepsy.
Our daughter was diagnosed with Epilepsy about 4 years ago. She’d been having absence seizures for a long time before she had her first tonic clinic seizure. They’d just gone unrecognized. As a mother that works in the medical field, it was like a dagger to the heart when I realized that I hadn’t figured it out sooner.
Our first tonic-clonic experience was on a trip in Oregon to see my father who was very ill and battling stomach cancer. The night before we were supposed head back to Seattle to fly home, our daughter collapsed and had a horrible seizure. I definitely scared us all. We had a trip via ambulance to the local emergency room where they did labs and a CT scan. Much to our surprise “everything was normal.” We were given a prescription for a re**al medication called Diazepam and basically told “use this for any seizures lasting longer than 5 minutes.”
We have had many different experiences with different provider since then.
As many know, it is often difficult at best to get in with specialists in our state. There are often long wait times. We have navigated this a bit including establishing care with Seattle Children’s Hospital at one point.
One thing I will say is- try not to get discouraged. We have heard over and over again that “we just might never know causes them.” Something else that you will hear frequently is that SLEEP and STRESS are HUGE contributing factors.
My main goal with this page is to help support other parents navigating this journey. If you are someone who’s been diagnosed with Epilepsy, we’re glad you’ve found your way here! If you know someone that’s been diagnosed with Epilepsy and think they could use someone to talk to, send them our way! This is a journey worth navigating with friends and a good solid support system. ♥️
