They're back...

[chop456]

While we were "up north" this past week, Paige had no morning issues. It was a welcomed relief that she could wake up and not have to deal with any morning myoclonics. We got home last night and guess what... this morning the myoclonics returned. She 6 small-ish jerks. It is so frustrating. I can see she is frustrated which makes me sad for her.

I did call the neurologist a few weeks ago asking why she is still having occasional myoclonics and if the Lamictal XR should eliminate them. They told me she could have occasional jerks and if they are not "interfering" that it is not something to worry about. She does have some room where we can up her dose of Lamictal, but I do not necessarily want to do that. I am tracking her morning jerks and she is having about 1 morning every 2 weeks with the jerks. Is this normal for JME? If she only gets 7 hours of sleep should the Lamictal still help to stop the jerks or is the lack of sleep an "automatic" trigger? Sorry for the questions, it all still seems a bit overwhelming. I'm just sad the myoclonics are still an issue for her

 

[Nakamova]

It would be great if a higher dose of Lamictal would eliminate the jerks, but there's no way to know for sure. Trial-and-error is the name of the game with seizure treatment because of the wide variance in individual seizure type and medication-response. It could also just be that the Lamictal isn't the best med to treat her myoclonus. Of all the anti-seizure meds, Clonazepam and Keppra have the best track record against myoclonic jerks. If the Lamictal doesn't do the trick you could take another look at their pros and cons.

Ideally, the goal is to have enough medication in the system to provide a margin of safety against things like infection or lack of sleep that may lower the seizure threshold. So lack of sleep is not an automatic trigger. As with the meds, everyone is different, and it's not always easy to tell which factors or which combination of factors are playing a role. It could be lack of sleep coupled with hormone fluctuations (if relevant) that is doing the triggering, or perhaps some other pattern in your daughter's life that hasn't yet made itself apparent.