Child with epilepsy

[Lou16777]

Hi,

My daughter has just been diagnosed with epilepsy after her 2nd focal seizure. As you can imagine it is heartbreaking. She is 5 with cerebal palsy but is mobile. Any advice for an absolute panicking mum?
Thanks!

Huge sympathy, it is a horrible condition.

Has the doctor given medication?

The main things are to get on top of dosage and good routines around sleep, as that is the best thing for the brain. It generally isn’t necessary to go to A&E after a seizure (unless injured) as there is literally nothing that they can do after the event.

Have a conversation with school about how to handle it.

It really is 😔 yes she has been given lamotrigine, slow weaning her on it.

Thank you, yes got a meeting with school Wednesday so hopefully some peace of mind...

I was diagnosed with Idiopathic Generalised Epilepsy at 2 so I know how bad it can be.

Have the doctors been through the likelihood of seizure control via meds?

Lamotrigine is a good drug to start on I was on it for the bulk of my childhood until I was put in one of the trial groups for Keppra (very good drug for children due to minimal side effects. That said it's well known for rage being a side effect).

First thing I'd do is reframe her condition: just because she has this condition doesn't mean she won't be successful or able to live a good life. Second look up the Ketogenic Diet it's a diet designed to control seizures though it is very difficult to maintain. If she has focal epilepsy she potentially could have the focal point surgically removed. You have options as does she so don't panic and don't lose hope.

Our local epilepsy nurses have been brilliant, especially when it came to liaising with school - hope you’ll have a similar experience!

I was diagnosed with epilepsy when i was 20, and i know how hard it was for my parents to see me having a seizure. So, i can only imagine how stressful this is for you.
All the best.