Thursday, December 8, 2011

In Which Connor Doesn't Work Up A Sweat

Today we discovered a fun new medical diagnosis to add to Connor's long, long list of really rare stuff that I get to freak out about all the time.  This morning I packed my still-miserable child in the car and drove him down to the hospital for a sweat test we've had scheduled for a while. 

See, I've mentioned on here a few times that so far as we know, Connor doesn't sweat.  We've certainly never seen him do it.  But we didn't have an official diagnosis, and for a variety of reasons it was important for us to know whether or not he does in fact sweat.  To tell you the truth, I figured he probably did, my "momtuition" was wrong, and he just hadn't been doing a whole lot of things that would make him sweat.  I mean, it's not like the kid hits the gym on a regular basis or anything. 

So anyway, they normally do this sweat test to check for cystic fibrosis (apparently people with cystic fibrosis have a higher level of salt in their sweat than typical people).  We wouldn't be doing the actual measuring-the-salinity-of-the-sweat part of the test since Connor already has a genetic diagnosis and doesn't need any more, thank you very much, so we were only doing the collection part of the test. 

The tech attached a couple of electrodes with a gel on them that stimulates sweating to the underside of Connor's arm.  Then he ran a low electrical current through Connor's arm to draw the gel into his skin and start the sweating process.  Finally he strapped on what looked sort of like a little clear plastic bottle top to the area where one of the electrodes had been to collect the sweat.  He did the same thing for the other arm.  I bundled Connor up in a blanket and we sat out in the waiting room for thirty minutes.

What I think was supposed to happen is that the sweat would evaporate upwards, go through a little one-way valve and then condense inside the collection chamber.  What actually happened was absolutely nothing.  The collection chamber was bone dry.

My momtuition was right-- not only is Connor not sweating as much as other people, he's not sweating at all.  While there are perks to this (my friend Julia pointed out that Connor won't have to wear deodorant at all when he's a teenager) it's actually a pretty serious issue.  Because Connor doesn't sweat, he's not releasing heat the way he should, which can drive his temperature up very quickly.  And of course, when Connor's temperature goes up he has seizures.  It's likely I might have even induced some seizures by bundling him up too much during cold weather. 

And of course that doesn't make me feel guilty or anything.  We probably should have had this test done ages ago.

Also he's much more likely to get heat stroke.  We'll need to limit his time outside on warm days and make sure that we wait until the very last minute to put his jacket on when we go out in the fall and winter months.  An air conditioner for our home has suddenly become an absolutely medically essential item before summer rolls around again.  And good thing we were already planning not to take him to Thailand with us when we go, because he sure as heck won't be visiting now.

So Connor's new diagnosis is anhidrosis, which basically means "lack of sweating."  One of the medications Connor is taking could potentially cause it, but we suspect he's had the problem since before he started taking the Zonegran, as he's only been taking that for a few months and we've suspected he wasn't sweating for a long time.  We'll consult with Connor's neurologist in our January appointment to see whether or not we should switch to a different medication, but my momtuition says Connor's anhidrosis probably has more to do with his autonomic nervous system issues or his genetic condition than it does with any medications he's taking. 

It doesn't really matter what's causing it though; it just matters that we know about, have an official diagnosis and a general idea about risk factors for the little guy.  We don't have any plans to add a dermatologist to the list of doctors Connor sees right now, but we can always do so in the future if we need to as he grows older.

So yeah, new diagnoses are not particularly fun.  But think of all the money I'll save on deodorant!

~Jess

2 comments:

Julia O'C said...

I can think of lots of ways to put a positive spin the no-sweat thing. I'm having a harder time putting a positive spin on Connor having ALL THE GERMS, though.

Hope Connor is feeling better, and I hope you're able to get out of the house and get some YOU time soon!

krlr said...

Hopefully by the time I get up tomorrow morning your new post will be full of rainbows and absent germs (I was going to write sterile-ity but that sounded wrong). You'd think with Connor's trifecta of germs there'd at least be a prize involved. Good luck!

 
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