Reposting as I had a few more things I forget to put in the first time. So I guess I should update everyone on Rosanna. She was discharged on Friday with no clear diagnosis. Most of her episodes are controlled by an anti seizure medication called Tegretol. She still continues to have 5 to 15 episodes a day. Most are little and short. We know most likely these arnt real seizures. The cause is one of two things. It could be a some sort of genetic movement disorder. The first set of genetic tests are pending and we will get those results during our follow up appointment in 6 weeks. You can google movement disorder if you want to scare the snot out of yourself, but it does give some examples of various forms of different conditions. I kinda wonder if perhaps one of the MTHFR gene mutations are at play (you can google that too) as she has both a lip and tongue tie. The other thing It could be is actually something somewhat normal. Sometimes Im told, when the movement center of the brain develops at this specific age, that it can in basic terms... go crazy. And when it goes crazy it can produce these benign involuntary movements. This is something she will grow out of, if this turns out to be the reason for it, rather then something we manage if its a genetic disorder. One of the things that does point to a genetic movement disorder is that this all started during a cold (which ended up being Rhinovirus) and viruses are known to turn on genes to disorders and diseases (same thing happened with me when I got sick with lupus 10 years ago). That being said, two babies in my online due date club have started doing similar movements and Ive talked to two other moms whose older children did the same thing at 8 months old, no reason was found and they eventually grew out of it. So we can look at that as a pointer to this whole thing being normal and temporary. Im going to post a video of two of her episodes, the video was taken on the day she started having large ones and also ones to the left. These were a couple of her worse ones. The ones she has now are much smaller and shorter. Thankfully though through this whole thing Rosanna is still her happy, perky, smiley self.
Posted on: Wed, 15 Oct 2014 16:31:19 +0000
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