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Original poster

Epilepsy medication

29 replies

CheeseToasty · 04/02/2024 08:27

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.

OP posts:
Rarewaxwing · 04/02/2024 15:16

Just to add re free prescriptions: ask the GP for an application form for a medical exemption certificate. This covers anti-seizure medication and any other medication.

Rarewaxwing · 04/02/2024 15:13

I've been in a similar position with my DS, except he had two tonic-clinic seizures. He was against taking medication at first, but changed his mind after he - and we - had looked into the risk factors of not medicating. We decided that the risk of him injuring himself from a seizure was greater than the risk of side effects from the medication.

I don't know how focal epilepsy compares to tonic-clonic epilepsy in terms of risk factors, but I imagine it's still very risky. Epilepsy Action might be able to help - they have a helpline.

My son is now on sodium valproate (Epilim) (NB - not suitable for women) and has no side effects. He hasn't had any seizures since he started on the meds.

If it's any comfort, although the epilepsy was a big deal at first, we hardly think about it now.

By the way, your DD should be entitled to a free bus pass now. If she chooses to take the medication, she'll also get free prescriptions (but she'll need to get a note from her GP).

Tinybirdie · 04/02/2024 14:27

What is the impact on her life from the seizures?

Have you been in touch with any of the epilepsy charities? Often they have helplines which can offer you real guidance.

BelindaOkra · 04/02/2024 08:34

Tbh if she is having enough seizures to pick up on a short EEG I would consider medication. Annoying they haven’t given you pros & cons though.

Could you ask for another EEG to make sure it wasn’t an unusual set of clusters then decide.

If you decide to go for it I would ask what the risks of trying meds then stopping them would be

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