Myoclonic epilepsy

[Millie04]

My DS, age10, has just been diagnosed with myoclonic absence epilepsy. I am reeling, very up and down in terms of mood. He is absolutely fine and taking it in his stride. Started medication today, sodium valproate. Has anyone got experience they could share? I have no epilepsy in the family so this feels like a walk into the unknown.

My sister is 11 and has generalised epilepsy, on her second medication now as the first didn't work and seizures increased. It's now been a few months seizure free! She also takes it in her stride but I think it upset deep down as she wants to do water parks and those tree climbing things, but as the medication is being titrated currently we felt it was best to leave it until they're more stable
I'm also a children's nurse and have seen so many children with epilepsy. It's a massive change and gives you lots of safety things to consider (e.g. Baths/showers) but it soon becomes a new normal

Thanks for your response furryelephant.
Oddly my DS starts his seizures first thing in the morning. It can take him out for the whole morning or day but they are not random at the moment so i let him go surfing etc in the sea without too much worry.
It's a strange condition and I'll be interested to see what effect his medication has. Hopefully not too many negative side effects.

Millie... My DS has a rare genetic mutation and part of that is Epilepsy so he's had it all his life.
He has absence, atonic and Clonic Tonic seizures.
Myclonic absences can come in at anytime. I strongly recommend that he is not surfing or doing any water sports that he can have some one with him. Epilepsy is a nightmare and seizures can come at anytime day or night ... He may well just seem like he is just having them in the morning but they can go unnoticed if he is not supervised.
You should be taking extra care in water .....
Surfing is a severe risk that I wouldn't take with a child with any form of epilepsy!!!
Please keep him safe ?!! It's a monster and regularly steals children's lives!
Best of luck to you all x

Ok thanks for the warning.
We are awaiting a meeting with his specialist to discuss further. X

My son is 20 and just been diagnosed x he is on same medication early days for us all

I think there are lots of different types of epilepsy. My DS doesn't have fits, more like periods of muscle jerks and confused but always conscious although I think it is progressive so things can change.

My son has myoclonic epilepsy with absence seizures. He was diagnosed at 7 and is now 16 and the seizures controlled for a number if years. At his worst he would have approximately 40 seizures a day and it would affect him greatly. He has other health conditions too, but gaining control of this has helped him hugely.

Myoclonic epilepsy usually presents in the first half of the morning and then later in the day. My son generally had a period between 10.30 and 2.30 without seizures before they started again.

My son was on sodium valproate but it made him excessively tired and I was worried about other side effects. He transferred onto lamotrigine at 13 after the doctors suggested we withdraw meds. However, it became apparent that he still had the condition. He''s been on lamotrigine for 3 years now and no seizures.

That's really useful to know charmatt. This sounds very like my sons epilepsy. I am concerned about the possible tiredness side effects so shall be monitoring closely. His seizures only effect him twice a month on average so if he's tired as a result of sodium valproate then the disbenefits will definitely outweigh the benefits!