Child seizure support group?
Hi parents,
Does anyone know a of support group for parents whose children (toddlers) have seizures? My newly 2year old son has had a few and we are so fearful of everyday. I would love to see if other parents want to connect and share support/resources.
Thanks,
Worried mama
Sep 21, 2021
Parent Replies
Hi Blakeb
I am so sorry you are going through this. My know 3 year old son was diagnosed with a catastrophic form of ep called Doose syndrome last year when he was 2. I am in a lot of FB communities that I can direct you to. This was all during the pandemic so no in person support groups and I did not even do any online ones. I could only survive each day....I prayyour child does not have any more seizures and this is but a blip. But feel free to reach out if you need something, advice, docs, anything.
Love, Tina
Hi- I'm sorry you're going through this. My son was diagnosed with epilepsy this year at age 5. It's such a tough thing to see your kids go through, and to have to change your life around. I found some FB groups too. Also the Northern California branch of the Epilepsy Foundation has an online parent support group, as well as some in person events. Take a look here:
https://www.epilepsynorcal.org/support-groups/
It's a great organization with a ton of useful info on the website.
Do you have good support from your doctors? We've been seeing a neurologist who's part of the UCSF epilepsy department, and have found them very helpful. It took three attempts to find the right medication for my son, but his seizures seem to be well controlled now. Consequently the stress has gone down enormously. Sending much love to you. Know you're not alone. Jackie