March 26, 2019

Growing Pains of a different sort

I used to say that being chronically ill was the hardest thing ever.  Until I had to live through my child having medical issues of his own.  Anthony has been keeping me on my toes since the day he entered this world.   Six weeks early and born fighting.  Then came the dairy allergy. Then seasonal allergies.  Next was asthma.  We were slapped in the face when we got his Tourettes diagnosis two years ago.  Didn't see that coming.  But now looking back, we should have!  I just wish more than anything, that he would catch a break already.  I have had a few people ask me about Anthony.  About how his tests went and why and what all the testing is about.  So I figured I'd explain a little.


Anthony has always been on the tiny side.  I didn't realize it until he started school.  And even then, it wasn't until middle school that it was even an issue.  In Elementary he was called little Anthony.  Because there was more than one Anthony.  And when he would come home and be frustrated about his size we would remind him that there was more to him than his height.  Big things come in small packages and all that.  But all his complaints came from himself.  Once 6th grade started, and the teasing was coming from his peers, all hell broke loose.




And as the days passed, I watched my happy go lucky boy, turn into an angry, hurt and self-conscious little man.  We were holding out hope of some growth come middle school, but year after year, he was growing less than an inch a year.  The first time his Dr. asked if we wanted to do a growth work up we said no thank you.  We passed the second time as well.  But now, with High School around the corner and still no growth, Anthony agreed to do it.  And so our journey began.


First up was a bone scan.  We were pretty sure that his bones would match his height.  Which by the way is the average height of a 9 year old.  But we weren't getting away that easy.  They were the average of a 13 year old.  And so we were off to visit the Endocrinologist.  Who Thank God is awesome and so good at explaining everything and even more so at checking everything.


Next up came labwork.  And a lot of it.  It was Anthonys first time doing blood work.  And considering that he once wedged himself behind the exam table and was screaming "don't shoot me!  Please don't shoot me!" when it was time for his 4 year vaccines, to say he is afraid of needles, doesn't even touch it.  But with a little help from his other mom, since he says I make him nervous, he came through like a champ.  One little tear when he was poked but that was it.

All those tests came back negative.  And we were starting to feel a little defeated.


Next up was the sweat test.  This one was a hail mary.  We couldn't find his Cystic Fibrosis test from when he was born, and with his already complicated breathing, we figured we would take a shot in the dark.  One part of me was praying for negative results but a little part of me knew just having a diagnosis would be a relief.  Watching Anthonys face fall when he was told, that the test was negative was heartbreaking.  He too just wanted an answer.  Although we are so lucky CF wasn't our ticket.


Fast forward a month and we were back at the clinic, facing another needle.  Which he took even better this time.  No tears.  This time he knew what to expect.  Only thing was this time, it was a 3 hour ordeal.  This was the STIM Test.  Pretty much what they do was draw blood and get a baseline.  Then give a medication that will make his body produce growth hormones and then draw blood every 30 minutes to measure how much if any is produced.  They also ran some more "just cause" tests to rule out a few more conditions as well as a chromosome work up to take a deeper look into his genetics.

We were warned that the medication would throw off his sugar and drop his BP.  There was a small moment of panic when he got super drowsy and his blood pressure didn't come up after a snack and drink.  He couldn't stay awake and they brought him more water to drink.  Eventually, he was able to walk around and we got to go home and wait.

Here we are 2 weeks later waiting.  Earlier this afternoon, the nurse from the clinic called to let me know that all his results were in and that the Dr had to leave due to a family emergency.  But to expect a call from her or one of the other Drs soon with the results.  I'm trying to stay positive but the mom in me is thinking of all the what if's.  Just to prepare myself should we get some not so great answers.  Best to be prepared right?  I mean at this point we have ruled out all the major things.  So just any answer should be a step in the right direction.  What we are going to do if even after all these tests we still have no answers?


So now you're all caught up with what we have been up to in the last 7 months.  If you made it this far, leave me a little comment so I can say thank you.  I know it was a lot, but damned if I don't feel a little lighter after writing it all out.  My boy is strong.  He is a fighter.  And I know he will get through whatever life is lining up to throw at him.  But please God,  give this boy a break and let it not be something life shattering.  And just let him grow already!

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