Hi everyone. I’m the mother of a (just) 17 year old boy with JME, who has (incredibly luckily, I know) been seizure free for 2 years. His consultant now wants to try and stop his medication and see how he goes, and I am incredibly worried about doing this, as he is finally enjoying some freedom, travelling independently, going out with friends etc. It will also mean he can’t learn to drive for now. I feel as we have no support, there is no plan in place if he begins to have seizures again, and last time we had a problem with increased seizure activity, the consultant took 6 weeks to get back to us. The epilepsy nurse is on long term sick leave. We do want to try, but how can I manage his risks, and is there anything in particular I should be looking out for? Has anyone else done this? It would be lovely to hear your stories!
Hi,
We have not faced this situation yet my son is 18 and just over a year seizure free. I’m dreading this conversation as the thought of another seizure is awful. Just my opinion if your son has a routine of taking his medication that he has adjusted to and is happy to continue and it will mean peace of mind for the both of you for now then maybe stick with the medication. If it is not causing him any side effects and he is able to get on with things then I don’t see the need to rush anything especially since the support you have at the moment is lacking. The decision is a joint decision between u and the neurologist so don’t feel pressured. Maybe in a few years when your son is an adult he can then make the decision for himself.
Hi there,
I (20 year old with epilepsy coming up to a year seizure free) have had the same issue with seizure worries and now I, like your son, has now gained independence being seizure free (congratulations to him!). Visiting my doctors last they were planning on reducing my medication. This obviously panicked me greatly as I was worried about what was to come dealing with the many I was having in the past. If he feels comfortable sticking to the medication routine he has now and there are no major side effects to the meds, it will ease the stress for the both of you. I would personally stick to where I know I am safe and that is with the dose I am currently on 
Hi. My son was seizure free for 2 years and doc weaned him off his meds. One year later… bam… maasive seizure boxing day. Then another year later xmas day. Two christmases in a row. I also noticed when he wasnt taking meds his eyes were jerking. Found out they were absences. So hes now back on meds for life. Dreading Christmas again incase it happens again!
Thank you so much for your replies. We decided to book a private consultant’s appointment with an epilepsy specialist we’d spoken to before. He was brilliant, and explained the pros and cons in great detail, and in particular how they might affect our son. He felt that 2 years seizure free was the bare minimum, and that given that it took a while to achieve seizure control, and that my son had all three seizure types, we should proceed with extreme caution! My son has reduced a little, but we have decided to continue on meds for at least another year, on a low dose, and then he will make the transition to adult services anyway, and things are likely to change. He was worth every penny, and his first words to my son were ‘Congratulations’ - making him feel like an achiever and not a nuisance!