Epilepsy medication

[CheeseToasty]

Sorry this isn’t an AIBU but I posted last week on children’s health and didn’t get any replies.

Last week my daughter was diagnosed with focal temporal lobe epilepsy and was wondering if anyone here could offer any advice on medication. The consultant has sent us away to decide if we wish to medicate. They did not offer any recommendations.

My daughter first noticed symptoms in the summer so we went to the GP which has led us to this point. Since the summer she hasn’t notice many seizures however they were picked up on the short eeg she had. I haven’t actually witness any either so was wondering how necessary it was to medicate and as we are not aware of them how will we know if the medication is working? She is sitting her GCSE’s this year so worried about side affects as well as the implications of not medicating.

Thanks for reading.

My DS is 8 and he is currently taking lamotrigine (alongside lacosamide and sulthiame). In the 4 years since he was diagnosed with epilepsy, we've tried 9 different medications and he continued to have pretty much daily/nightly seizures. His are also mostly focal seizures. Since starting lamotrigine last February and working our way up to his maximum dose, we are on our longest period of seizure freedom. 235 days so far! He had no side effects from the lamotrigine either. Everyone is different though. It's hard to know if the medication is working, it really is just a case of wait and see if seizures continue or not. There's a group on Facebook called 'parents of children with epilepsy UK' and there is a wealth of knowledge and support from the other parents on there, I'd really recommend joining it x

Lamotrigine can also have a mood stabilising effect, so might have a bonus impact on her anxiety.

The nurse's email sounds like an out of office. I completely understand your worry at the moment, and feeling like you've been abandoned, but wait until the nurse is back next week, and remember they will have a caseload of 100s.

Hi @CheeseToasty I have temporal lobe epilepsy, which wasn't diagnosed until I was 30. I realise everyone's experience of epilepsy is personal to them, but thought I'd share mine in case it's helpful.
Before being diagnosed, I had 2-3 years of 'panic attacks' which involved an awful feeling of dread, racing heartbeat and deja vu. I could go for weeks without them, then have several in one day. They weren't visible to others, I probably just looked like I'd gone quiet for a moment. It was only when I had a full tonic clinic seizure and saw a neurologist that the episodes were linked to epilepsy. I went straight onto medication and am so pleased I did, because I continued to have tonic clonics which completely wiped me out. As the medication stabilised they and the other secondary seizures (what I'd previously thought were panic attacks) stopped.

My son is in lamotrigine and is fine on that. His started when he was about 5. His initial neuro took him off meds and dismissed him from care after a few years and a 40min EEG.

i went to see a new neuro for adhd testing and they did the 3 day EEG and promptly put him back on them. He has only had one breakthrough seizure since then which was a couple of years ago. He does have ADHD also and switched to a stimulant for that in the last year. No effect on the lamotrigine usage.