Myoclonic seizures??

[Twistedunicorn]

Anyone got any experience with this? My 3 year old has just been diagnosed today after a crazy few months.

Yes, I've got JME juvenile Myoclonic Epilepsy with photosensitivity.
I take medication but still get the occasional tonic clonic seizure & petit mal seizures.
I went on holiday recently and accidentally mixed up my meds, and had a few Myoclonic seizures in one night.

Despite being 45 the type of epilepsy I have is still referred to as 'juvenile' because it's a syndrome I haven't grown out of.

Does your child only have Myoclonic seizures & will they be needing meds?

I also had JME (developed as a teen) which was controlled by medication for around 10 years. Under supervision of my neurologist, I came off medication around 3 years ago and have been seizure and medication free ever since. I believe it’s generally well controlled by medication. From personal experience, once my seizures were under control it had very little impact on my day to day life.

Thank you both for your replies, is this something you had diagnosed from a young age?

@SommerTen he'll be needing meds to control it due to the number of seizures he's been having in a small period of time.

I was around 15. My seizures were always soon after waking up. It must be a scary time for you but I’m sure he will be fine!

Yeah it was terrifying up until this afternoon cause we literally had no idea what was causing it, he's had every test going today n we finally got to the bottom of

I don't have any experience of myoclonic seizures but I just wanted to offer you

My youngest was diagnosed with epilepsy earlier this year (he has tonic clinic seizures) and it's been an incredibly stressful time.

Hopefully your child's seizures will be well controlled by medication.

@bagofconkers thank you so much!

His poor wee body's knackered after a rough few days, we're in over night tonight just for monitoring n to see how he reacts to his new meds..

Your poor wee one must be feeling the same its such a shame to see them unwell eh xxx fingers crossed 🤞 their controlled and don't cause too much disruption to their everyday life

@Twistedunicorn I was diagnosed at age 7.

I hope your little boy will soon be stable on meds x

I've struggled to find the right mix of meds personally but I think it's because I'm photosensitive as well. And I have MH illness so my meds for epilepsy have to go with the MH meds.

Aww I'm hoping this medicine works and stops these happening or hopefully one day he grows out of it x

Firstly have a hug, it's really hard news. My dd has partial complex seizures which thankfully seem to have stopped with puberty plus petit mal which she still gets but are not a big deal, hardest when they are young and can't tell you it's coming on (she got 2-3 mins warning). Dp's dd has severe epilepsy, several kinds of seizures and you learn to cope with it, listen to the professionals and learn triggers if applicable. Take care

@gogohm thanks for the hug, it's well needed (that and wine 🍷 ) lol

There is no trigger or warning with these seizures they just happen, the hospital are sorting a helmet out for him to prevent him hurting himself so that puts my mind at ease a bit.