Ataxia

During Jillian's last IEP conference, her teacher asked if I'd noticed that her hand shakes. I had as a matter of fact, noticed her little hands shake when she is coloring, using a fork or placing food in her mouth, setting up her horses and building with blocks. So, basically, all the time! It's time to take her to her pediatrician to address this issue. When you have a child like Jill, you need to pick your battles, so to speak. I have noticed her tremor for maybe two years, but when visiting with her pediatrician, we always had bigger issues to address. Bigger fish to fry! Now that we have a break from surgeries and feeding therapy, maybe I can tackle this problem.

Ready. Set. Go.

Ataxia is the kind of lack of coordination and muscle control that I believe we are talking about with regard to hand tremors. There is a possibility that Jill's ataxia is associated with Klippel Feil Syndrome. There are reports of people with KFS who have developed ataxia due to spinal involvement mainly due to a compressed nerve. Jillian has had a full spinal MRI as well as multiple spinal xrays and no cord involvement was indentified so I would doubt this is the cause.

Another possiblity is that she has Arnold Chiari Malformation. There is a large percentage of people with KFS who also suffer from Arnold Chiari. One of the main signs is ataxia. Seeing that Jillian also didn't walk until the age of 2 does indicate she could have something wrong with her cerebellum, pointing to Arnold Chiari. She did have a normal MRI of her brain and this was ruled out. I do wonder if this could have been missed in a very mild form. (Arnold Chiari and KFS)

I have also considered that her neurological development is delayed and with time, her balance, coordination and hand tremor will improve. This is a real possibility. As I mentioned, she didn't walk until 2 and poor thing, once she learned to walk, she fell all the time! Her coordination and balance was definitely an issue. I carried her up and down stairs and got used to having a preschooler on my hip. But now, she is running, jumping and climbing stairs like a pro. Maybe her hand tremor will improve in this same way.

Lastly, many children diagnosed with one syndrome, have more than one diagnosis. It could be that Jillian has something we haven't discovered yet. Scary, but I must consider it.

I will be making an appointment for Jillian in the next week. As much as I'd like to sweep this issue under the rug, I worry about her not learning to write. She is beginning to recognize letters and I'd love to help her learn to control her movements enough to write those same letters.