Myoclonic seizures vs jerks

Some time before LJ’s surgery but after his birthday, we saw his neurologist.  It was just our annual appointment but between visits, we had raised LJ’s dose of Clonazepam because his jerks were becoming more frequent.  Plus, his therapists at the Rehabilitation Institute (RI) felt these jerks would start interfering with his ability to do things independently. 

At our last visit, LJ was diagnosed with myoclonic seizures.  Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. 

I expressed the therapists concerns, along with my own.  They seemed more frequent when LJ’s Botox was wearing off, or when he was really tired and hadn’t had his medication in a while.  I’m not sure what I was hoping for, but then the neurologist started mentioning Keppra.  I had mixed feelings about this but he reassured us that we’d only start the Keppra after the EEG verified they were indeed seizures.

The following Monday (I can’t believe he got us in that fast!), Louie took LJ to get his EEG done.  The nurse asked him to stay afterwards because our neurologist wanted to talk to him (which just shows me how awesome our neurologist is… I mean, even the nurses were surprised he was coming down).  He told Louie that the neuro-something (I’m not sure what they’re called) had to review the results, but he did not think LJ was having seizures.

When falling asleep, does your body ever jerk, startling you awake?  That’s a myoclonic jerk.  Hiccups are also apparently a myoclonic jerk.  Imagine how annoying it would be to have these jerks… all.the.time. 

I suppose I should have taken this as good news but all I could think was… now what?  Before, when we believed they were seizures, there was an answer.  And as much as I didn’t like the idea of more medication, there was something

So I did what many other mothers do.  I googled it.

Turns out, we’re already doing the treatments that many sites suggested.  He’s on the exact medication, albeit the lowest dose, and he receives Botox.

Wait, I thought.  Botox?!

I guess it makes sense.  From what I gather, a jerk is a nerve reaction as opposed to a seizure which would be a reaction to electrical charges in the brain.  I get why it’s happening to LJ; he had significant brain damage.  In fact, everyone expected him to develop seizures.  Hell, I’m sure they still expect him to.

I need to do more research on them, although I have a feeling I won’t get too much more information then I already know.  The most frustrating thing when dealing with things like this, seizures, hell, even depression, anxiety… it’s just a PRACTICE.  The brain is still a very unknown territory, especially when it comes to things like damage.  And then there’s conflicting arguments, for example HBOT (hyperbaric oxygen therapy) where many many parents swear by it, but just as many, if not more doctors say it’s a load of crap and probably just a scam, with how much is charges.  How do they know?  How do they know how the brain is reacting to this treatment?  No, it’s not an exact science, but neither are the drugs you’re prescribing my child. 

Which also makes me wonder how they read LJ’s EEG?  He will always have abnormal brain activity due to the amount of brain damage.  The EEG will never be “normal”.  Do they compare his results to “normal” EEGs?  Is that really an accurate thing to do considering the circumstances?  This reminds me of how they keep putting LJ (and all the other kids with special needs) on the same growth chart as typical kids.  In case you didn’t realize this, MY KID IS NOT TYPICAL.  Why they do this when there is a CP growth chart out there, I have no idea. 

Sometimes I get overwhelmed, thinking about LJ and his needs.  But then he’ll smile at me and it all melts away.  I know this is just one of many things we’ll have to deal with on Our Yellow Brick Road, but we’ll deal with it together.  He’s worth it.

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4 Responses

  1. You are a wonderful Mom for LJ. I see a book in your future! Your writing is incredible and your knowledge even more so. LJ is adorable.

  2. Wow. It has got to be so hard to make decisions on what to do when there is no proof of what will work. It sounds like you are doing a wonderful job raising your children, Christy. And they will love you always and forever for it.

  3. Hiii …. glad to see your blog, I am a blogger Indonesia. Welcome stranger!

  4. I get those jerk reactions every now and then. Sometimes when I’m falling asleep and sometimes just randomly. It doesn’t happy too often though. Good to finally know a name for it!

    Also, LJ is the cutest 🙂

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