Made of Gray

Neurology & Artane Update

Holly D Gray6 Comments
In July, before we went on our vacation, Caleigh had her 6 month neurology appointment. It was a good visit and I can't really recall anything negative.

I can, in fact, recall all the positives. The neuro was ecstatic about Caleigh's communication skills with the iPad. She spelled out her name for him and did some math problems as well. He was thrilled.
AUGwash
He then pulled up a couple of Caleigh's brain scans on the computer. He was looking through them as we were talking. He said "it grew." I thought he meant that Caleigh had grown so I acknowledged him with a "yes she had a growth spurt this past spring." He said "no, her brain grew. I've never seen anything like this." At this point he was all kinds of excited. Eric and I told him that her head measurements had grown, but we just figured that was normal. Caleigh's head has always been 43 centimeters. As long as I can remember that has been the case. The past few appointments were measured at 48 centimeters. That's a 5 centimeter growth. Come to find out he was looking at a CT scan from February 2010, when Caleigh had yeast sepsis in the ICU. That compared to early scans. So her brain has probably grown more we just don't have a newer scan to compare. I saw the images with my own eyes. Areas with nothing are now filled in. Areas that were uneven were filled in. The blank large space that once lined her skull is now tiny. He told us to keep doing what we were doing because we obviously had a higher power helping us out.

So.. Caleigh's brain grew. Kind of amazing, huh?

Give a neurologist/neurosurgeon a child's brain that wasn't supposed to grow and show him it has. Talk about geeking out.

This led him to being totally stoked. He talked more about deep brain stimulation surgery and how they are trying to get the age lowered from 7 to 5. He told us that Caleigh would be the only 5 year old, so far, that he would even want to do the procedure on. I semi-panicked about voluntary brain surgery and he could see it on my face. I told him that I was going to shut down on that subject for now. My body can not take the thought right now.
AUGstand
At the appointment, we decided to go up again on Caleigh's Artane dose. This medicine has truly been a success for Caleigh. We've seen huge improvements with just this latest increase. Today marks one year on the Artane. I remember in the beginning being told horror stories. I remember researching like crazy to find others on it. I was even told how a child died of an heart condition after being put on it. I was scared to try something so voluntary for a movement disorder, but we finally took the plunge and I can honestly say that we couldn't live without it at this point. One year later, Caleigh is now on 18mg a day. The main improvement that we have seen with this increase has been Caleigh's ability to stand for long periods of time without jerking and falling. Standing at the beans and rice table and couch are daily routines now. She is getting stronger with the ability to stay longer. Once things settle down in the intestine department we may try to go up on the dose once again.

Great news from a neurologist is always a happy day. Hoping we can have another in about 5 months when we go back in.
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