What a Big Jerk!

Back when I was in the 8th Grade, we were treated to a camp day.  It was nearing the end of the year and symbolized the transition between middle school and high school.  At the end of the day a presentation was put on by a group in our class.  It was about a lawn mower that would not get started and run.  Members were asked to come up from the audience and start the mower.  The first couldn't.  The second person tried harder, but still couldn't.  The third person tried really hard pulling on the cord and finally got it started.  The final comment of the presentation was, "Thank you, [so and so], we knew it would take a Really Big Jerk to get it started." The joke was on the student, not a recognition of his strength.

For my daughter, she is officially in the club of those that suffer from Myoclonic Jerks.  It is no joke.  Sadly, the body goes through what we perceive to be giant, full-body hiccups.  "The Jerks," as we so unaffectionately refer to them decided to pay her a visit three years ago during the time she had a bad ear infection that would not go away.  Every time we put drops in her ears the jerking would begin.  They were physically quite violent for her.  Sadly, they did not go away when we stopped the ear drops.  She would have periods of rest, but never a day went by that she didn't have an issue with them.

We took her to the ER when they started during one of her private music lessons.  She couldn't even walk out of the room, I had to drag her to the hall then get a wheelchair.  Once we got to the ER, they immediately took her in.  By this time she was having upwards of four to six jerks a second.  They were very hard, very fast and attacked her whole body. The ER docs were in a panic to find out what was wrong.  Then out of nowhere, they stopped.  The doctors went ahead and gave her some meds and home we went.  The ear infection lasted for about a month and the jerks for a couple of months longer.

She did see her neurologist, had a brain scan for three consecutive nights making it possible to determine that she was not having seizures along with the Myoclonus.  The doctor did put her on some Klonopin each night to help keep them under control.

After the jerks subsided, we only saw them in small spurts.  Anytime TLC had a pain or became cold, she would begin having the jerks, mild in strength and repetition.  Sometimes it would only be one jerk and other times she might go for a half hour.  The jerks mostly just affected her neck and her arm at this time.  For three years following, it rarely got bad.

A year ago, we had an attempted home invasion during the middle of the night.  The Jerks had started just prior to that; however, they became very intense for a couple months following. The doctor was not worried about it and we continued her as before.  Within three months they again went away.  She was off the Klonopin at the time and had been for quite sometime prior.  We ended up putting her back on it to keep her stable.

Well, this week it returned and we don't know why.  She is still on her Klonopin, is not sick and is not in pain or persistently cold.   But this time I noticed two different types of events with the jerks.  One that is what we refer to as aggressive, they are there then they are gone, usually just a small cluster of jerks.  The second was less aggressive, very mild, but constant without a break.  It only affected the left side of her body and it was like she was "chair" dancing to the music being played in the room.  It continued for an hour and then went away.  Even though they were not hard jerks, they were constant almost to a tempo and exhausting.

They come whenever they want, during her sleep at night, during the day, during stressful times and during really fun times.  They can be as simple as a finger or eyelid twitch, very hard and painful hiccups to full-body episodes that look like Grand Mal seizures.  She can't make them happen and she can't make them stop. She said they hurt even more to try and make them stop.  There is just no control over them.  And, in our opinion, they are "Really Big Jerks."

Just another stop along our journey, in rare company.

To see a short video of her having a mild jerking episode in her sleep, click here.
The video above shows a mild version of a full body episode.  The jerks are sudden and very painful.  She has been to the ER at one point with these being ten times as fast and much harder.

The video below shows her having a slightly different episode which occurs constantly, the jerking is milder and it can last anywhere between 30 minutes and two hours.  It also only occurs on her left side. The one in this video lasted for one hour. The jerks were focused in her hip; however, you can see a jerk that was focused in her neck a couple times as well.
http://youtu.be/rcHZ4uhr1Gs