I think that you are stronger than you give yourself credit for. UT is bot easy seeing a loved one deal with seizures especially your own child. I work in Healthcare and struggle with having to see patients have seizures. I am also epileptic myself and have tonic clinic seizures in my sleep regularly. Om of the hardest things for me is to see my family's emotions when I come out of one. I would recommend following these groups they give great advice. I would also say to download the epsy app that will allow you to track not just seizures but auras and any signs or differences you see in your daughter so you can share them with her neurologist.

Thank you everyone. Just having someone hear is helpful. That you took time to respond ..thank you so much.

I understand. Whenever I had a seizure, my mom would always talk really calmly and softly so I could know I was safe and ok. Then she’d find a way to make me laugh, even if it was just for a second. Feeling safe helped me feel like I could return to normal (and I usually got ice cream or something I really wanted while I was recovering for the next couple of days lol). Find what makes your daughter feel normal and brings her joy. Being a part of her feeling like every other person without epilepsy, for however brief of time, could bring you strength. It will give you both the happy memories everyone should have. Be your best when she’s also at her best. That can help give you the energy to be there for her at her worst.

@A MyEpilepsyTeam Member , I’m sorry that your daughter’s seizures are continuing. A few months ago I sent you 2 different website links that might be helpful to you now if you’re looking for support. One was the www.epilepsy.com website & on that site you’ll find helpful information about seizures & Epilepsy & an Epilepsy Support hotline phone number where you can call & talk to someone 24 hours a day/7 days a week & on that site you should be able to find some kind of information about your local Epilepsy Foundation. But in my last post to you you’ll find that I provided a website to the Epilepsy Alliance North Carolina website www.epilepsync.org & you can look on their website & see if they offer any support groups. Many Epilepsy programs offer support groups for parents & caregivers & they might offer a counselor if you wanted to check on that. If you’d like to try & apply for a grant for an Epilepsy Device for your daughter, The Danny Did Foundation can help you do that. Go to www.dannydid.org & click on the box in the top right corner & then click where it says “Epilepsy Devices” & on the next page you’ll see where it says something about applying for a grant for an Epilepsy Device that you’ll see listed as you scroll down a little further but read carefully because the grant can only be used on certain devices. If you have any questions about that then The Danny Did Foundation call help you. Continue to keep her doctor informed of her seizures. I hope this helps some. Sending Thoughts, Hugs & Prayers to you & your daughter & prayers that her seizures calm down. Your friend in Texas, Becky

Mentioned Users

A MyEpile...

Epilepsy Alliance North Carolina

https://www.epilepsync.org

Epilepsy Foundation

https://www.epilepsy.com

Advancing Awareness of Epilepsy & SUDEP - The Danny Did Foundation

https://www.dannydid.org

I believe I saw something many others are thinking,if not already said to you by both your son and many other are are thinking about the success you have made so far!!!