Monday, September 19, 2011

Turn down the heat please....

Some of you who've been following for awhile all know my kids have quirks and "issues."  Some have medical things well beyond our control.  One of those is Alex.  Alex has what is called a horseshoe kidney (or renal fusion).  This is also one of the many things that can happen with FASD is what we were told by our neurologist.  Essentially, it is one big kidney in the shape of a horseshoe.  For this reason, Alex is to avoid contact sports such as football or wrestling.  Those he can never play.  Which is fine.  Just that Alex is our sports nut for sure.  Another thing apparently that happens w/ people w/ this is that they get over heated very easily due to the adrenal glands.  However, recently it seems Alex's overheating is getting much more severe.  He has an appointment with neurology very soon so we're asking for a referral for the endocrinologist in the area.  Can only go by referral.  Alyona went there when she was dx'd w/ failure to thrive and possible dwarfism among other dx's.

Now, Alex has always had regular blood work done just due to the other meds he's on.  Our neuro is extremely cautious & always on top of things.  None of us thought too much of Alex's over heating issues.  But this past year his temperature regulation issues (also present in FAS kids some times) seem to be more prevalent.  So, we will be asking if this is normal since he's hitting adolesence age or what may be contributing it.  Alex is a very healthy kid otherwise and really doesn't have too many other physical issues.  Two weeks ago, we had an Upwards soccer game.  It was hot out.  Alex assured me he'd be fine w/out his cooling vest.  I know, retrospect, I should have stepped in but honestly, we'd gone all summer in the 100's w/out incident I thought surely this would be okay. I'll go bit by bit & explain what happens.


 They always say a prayer before the game.  Alex's team is in the blue & he is #9.


 Alex in action on the field.  This was in the first quarter I believe. 


Second quarter, Alex is started to get "that look."  Even Alyona noticed it.  I don't think Alex is going to last long.  I yelled at him to get water which he did.  Remember, I had doused him w/ water even before the game began.  


This was Alex AFTER he'd already been cooling off for over 10 minutes.  Look how red he still looks.  When he got over heated, he ran off the field and said he couldn't breathe.  Others were rather nervous but we've been through this before. His hands & such were going numb as well.  Put him in the shade and started the cooling down process. 


Alex, after the game getting snacks.  Still hot but standing.  Alex told me he promised to listen and wear his cooling vest next time.  Relief.  See, I was going to tell him he couldn't play unless he wore it next time but was glad he came to his own conclusion on that one.  Nonetheless, we want to be sure it is just over heating going on and nothing more.  In all other areas, perfectly fine.  He loves soccer and we encourage him to play sports.  It's where he shines.  With all his mental/ academic FAS health issues, we need to make sure we find what is one of his strong points.  Soccer and sports really is one of those.  Hope one day we can send him to some type of camp. 

Just wanted to show you some issues that you may not be able to first see with your FASD kids but may discover slowly over time.  Temperature regulation is something I've heard of other parents having issues with.  For Alex though, we need to know if it's the FASD or the kidney issue.  Either way, we can work with it so that Alex can really enjoy sports w/out stopping for sure.  Out of my FASD kids, 3 really have temp issues.  You'll see some of my kids freezing in the 100 degree weather.  They are not.  It's just who they are.  We get strange looks sometimes but that is okay.  As long as the kids are healthy, safe and thriving, I don't mind.  I'll take those looks any day.  So, if you ever see a kid on a playground in the middle of summer w/ a sweatshirt on or a kid seeming to sweat when it's only 70 degrees out, don't stare or think they're weird.  They're just who they are and simply enjoying life as a kid. 

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