Child aged 17 diagnosed with Epilepsy

[Gemlam55]

PLEASE HELP !!!
I have three girls ages 17, 13 and 10 🥴
My 17 year old daughter was diagnosed with generalised epilepsy at the age of 16. I'm looking for anyone in Norfolk young/old and families that are going or have been through the same thing. We have struggled as a family to get support and wondering if there is anyone else out there who feels the same. My aim is to build a group of families who can all get together and talk one way or another 💗

I'm sorry your daughter has been diagnosed. Look for groups on Facebook - ESUK would be a good place to start. My daughter had infantile spasms and we started a FB support group for similar reasons and now run a small charity with local meet-ups. We're the other end of the age spectrum obviously but it does help to meet other famies who 'get it'. Good luck!

Not in Norfolk but happy to talk /message. 17 yo DS diagnosed at 15.

Ok so I have never been on a forum before so excuse my ignorance please. I'm not sure what DS means
I dont have facebook as trying to encourage my daughters not to have social media but maybe that's the way I need to head. I want to start up a small charity and group near me as the closest one is 2 hours away.
She is still having grand malls but is 1 month seizure free tomorrow YAY !!!!!
Medication has been changed alot.
I think its really important for not just our children but for us parents to talk about things like this.
Thankyou for your kind words and time xx

Ds = dear son.
A lot of the existing group use FB, it's worth starting a profile even if you don't add any friend and just use it for the epilepsy groups.

That's so hard having epilepsy. Hope you get support. On a practical note she is entitled to free bus travel. Sorry....not much support to you but just in case you'd not been told.

Poor you. She will struggle with independence, she will also struggle to get a driving licence.

Has her local consultant at the hospital directed you to any local support groups?

Hopefully you will be entitled to the some financial benefits to help : the old DLA (Disability Living Allowance) which could be £600-£800 per month, but the new PIP is much worse to get!