Decisions

[Ruby17]

Hey, my daughter was diagnosed with absence seizures when she was 4 years old, they put her on Epilm and Ethuxomide which controlled them. They took her off after a couple of years and she was fine for about a year and then she had a tonic clonic seizure and was hospitalized as every time she fell asleep she had one of these. She has now been seizure free for 4 years and they want her to come back off her meds, I am reluctant for obvious reasons, has anyone got any experience of coming off meds later in teen years? thanks in advance......

[EpilepsyAction1 Partner Epilepsy Action]

Hi Ruby17

It is a very difficult time deciding whether to try come of epilepsy medicine or not, made even hard by your daughters past experience.

As your daughter was only four when the doctors last stopped her treatment, and the majority of children become seizure free as they pass through puberty, it may be that this time things will go differently.

epilepsy.org.uk/info/syndro...

It’s not possible to predict how anyone will respond to stopping their epilepsy medicine. The doctors need to consider things to help make any decision. We list some of these considerations on our website. epilepsy.org.uk/info/treatm...

For some parents contacting other people who understand what they are experiencing can help. As well as Healthunlocked, you could try our Facebook page.facebook.com/epilepsyaction

You can also talk to our helpline team on the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Advice and Information Team

[AlexT]

I stopped taking seizures when i was 9, took of meds and they never returned until i was 34. Your daughter might be even more lucky and they might never return even as an adult