Thursday, January 12, 2012

PWS Sucks

I know that this is not a new revelation for many of you.  It is not a new revelation to me either, it was just one of those days where I was reminded of it loud and clear.

I'll start with Ayden Jane getting thick and cruddy with a nasty cough.  Of course, along with this we get, "I'm hungry" 900 times a day and a panicky sort of personality.  Throw in a 0.05 second attention span, a dose of clingy I must climb on mom and a dash of "what?'  (not sure if she just can't slow down enough to understand or is so clogged she can't hear)  Other than the cough, not your typical sick kid signs.

Jump to last Monday.  I had her labs drawn to rerun because I just had that Mom feeling that we were headed for trouble.  I got them back this morning just after I made an appointment at her pediatrician.  Her IGF 1 is still out of range, but the other stuff makes that sort of an invalid number because it basically says she is sick!  Last Monday her white cell count was out of range high already.  There are some other numbers I am trying to get to the bottom of...  I am so blessed to have 2 great pediatric endocrinologists guiding me.  Looks like I will being adding an allergist at their suggestion.

So, Gary took AJ to the pediatrician.  Our regular one was not in so he saw someone new.  She said that with no fever and no other typical signs of infection she "was comfortable with not giving her any medication."  Excuse me???  She gave Gary a script to do an x-ray if he was concerned about pneumonia and mentioned there might be a slight something in one lobe...  She also mentioned that we have been fighting this a long time...  Luckily, Dr. Clark had already told me from the labs and history that she wanted AJ on antibiotics and steroid today so if we had any trouble to call her back.  Did I mention how awesome she is?

So, the fact that Ayden Jane is special needs (which means NOT typical) means that her reactions to things are different.  She is not just low tone or delayed...  She is way different on the inside and a little problem causes a cascade of trouble which takes a looooonnnngggg time to correct.  No, we cannot take a wait and see approach thank you.

As of tonight, meds are in her thanks to Dr. Clark and I am confident that I am learning how to read her signs of illness correctly.  As for what's next?  First, get through this one as best as possible.  Second, we will try zyrtec for allergies as it was magic for Noah and suggested by Dr. Clark.  Hopefully it will not have the drowsiness side effect.  Third, get an allergist on board if necessary to get her eosonophils?  something like that, back on track.  From my understanding they are fairly high and signal her body is reacting to something...  Oh, I have so much yet to learn...

Through it all Ayden Jane is goofy and happy.  (Demanding, but happy)  She had some hysterical lines tonight as she continues to be quite the comedian and has a flair for words.  I promise I will start writing them down as she says them because I can never remember when I get to sit down and blog!

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