October 28, 2008 mcfadyena

Felt the Urge


Trey checking out the pilot's view on his way to UNC for testing in May 2008.

I usually get the urge to write after I receive news about Trey. This time the news was that Trey has carpal tunnel syndrome (CTS). After hearing Dr. Muenzer speak at the 2008 MPS Symposium that children affected by MPS II should be tested for CTS by the time they’re five, I requested Trey to be tested. I had wondered about the possibility of CTS. CTS causes numbness and tingling in the fingers and clumsy hand movements (apparently… I’ve never had CTS). Trey’s fine motor skills are not awesome and he does have a finger in his mouth when we’re reading or watching TV or that kind of quiet activity when his hands are not engaged. It’s hard to describe, but he really likes his hands in motion. It’s like he’s always trying to massage his hands.
I’m not surprised about the CTS diagnosis, and in some ways it is a relief because now his fine motor drop in skills from Dr. Escolar’s May/08 test and the fact that although his grip strength is fine, he has trouble hanging on bars for long periods of time… all those things could quite possibly be explained by CTS.
Ryan was upset. He didn’t know that CTS in Hunter Syndrome is very common and he didn’t see it coming at all. “He’s not even five,” is the first thing that came out of his mouth.
That is the hard part for me. Poor Trey. He catches breaks compared to other kids with MPS and other medical stuff going on, but compared to his brother and sister and most of the kids around him, he doesn’t catch a break. It’s not fair. Trey is learning that young. All people learn about fairness along the way, but I don’t think most learn it this quickly or in this way.
I recently read an article about peace protests and whether or not children should be a part of them. One side says no. Kids are too young for this kind of politics. They will learn politics at some point, but when they are young, if you want them to be politically engaged and voters as adults, their political experiences as youngsters should be positive.
I’ve also heard of a similar argument for how to raise environmentalists. In order to raise a child aware of and interested in the environment (one who enjoys being in the wilderness and is invested in keeping it healthy and green), one needs to expose their child to the fun that can be had in the environment: going for hikes, climbing trees, that sort of thing. Don’t teach them about endangered animals or pollution at a young age.
The other side says that the above ideas come from people who have this choice. They can choose to have their kids wait until they are older to be exposed to passionate and angry politics. Kids who live in countries being bombed daily or kids whose two moms get asked where their dad is (and the list goes on…) don’t have this choice.
I feel that Trey fits into this latter group where he doesn’t have a choice. He has been introduced into the world of unfairness early. I just feel for the little guy.
I tried explaining a bit of the Carpal Tunnel stuff to Trey and he told me his hands are fine. He doesn’t want a doctor to make his hands feel better because he knows that it will involve something he doesn’t like.
It’s funny how this CTS diagnosis affected me though. Although I’m sure I will be more worried closer to the surgery, I don’t really see it as a big deal. All the physical stuff can be dealt with. Trey will grow up to be strong and passionate, thoughtful and wonderful. The physical stuff is disappointing and hard to watch Trey go through both physically and emotionally, but that’s all. It does not cause the fear and dread in me that the CNS stuff does. In comparison, it’s peanuts.


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