In a homeschooling house full of 7 kids & 3 guniea pigs....there is never a dull moment! A lot of people show genuine concern for us and want to know how we are doing, as the road we've left behind was not a pleasant one. So, here I am, to tell some of our stories...share some of our days...and open up a part of our world to you! Come join us on our journey so you won't miss the moments that take our breath away!

Wednesday, March 2, 2011

Emu's Diagnosis Day

"Idopathic Short Stature"....the phone call came early this morning, what a way to start our day.  I dreaded the phone call, but yet I was so anxious for it to come.  I knew I would be dissapointed, no matter what the answer was going to be, and yes, I think I am!

Idopathic Short Stature, what does that mean?  It means they have to call it something.  It means that the Endocrinologist, has absolutely no hormonal explanation for his lack of growth, from her standpoint.

I wrote down everything as she was speaking to me.  My mind was in a whirlwind, so it was difficult to ask questions.  I felt like I couldn't think very clearly.  I did ask some questions, but now I am filled with so much more.  I am totally confused.  She said that Emu IS Growth Hormone Deficient, but he does not meet the criteria for a GHD diagnosis.  She said his growth hormone level is 12.5.  When I asked what it "should" be, she said anything greater than 10 is considered normal.  She then went on to read all of the levels from each blood draw.  8.4, 5, 12.5, 2.6 & now I am confused.  Do they not average those, because his average would be 7.2.  I'm assuming they simply take the highest number, but out of 5 draws only one is above 10, so to me it doesn't seem right to take that number. Not that it would really make a difference in my choice to treat, but it would definately have an impact on his overall health and well being, as a true growth hormone deficency not only effects your size, but also all of your organs.

Her suggestion is to still treat him the same and to try and get growth hormone therapy, 1 shot each day, approved under a diagnosis of Idopathic Short Stature.  It is one of the 9 criteria approved by the FDA, but it is the most "wishy washy" as she called it and the hardest diagnosis to get approval for.  She is sending me literature to read over, so now, I need to educate myself and decide if I want to pursue growth hormone therapy for him.  From what I already know, this is not an avenue I will choose for him, especially since she thinks this will only gain him 3-7cm of growth, to me, it is just not worth the risks!  If it is approved, then the next battle is cost.  Growth hormone therapy is extremely expensive ($15,000-20,000 per year) and not all insurance companies pay for it, though, sometimes the manufacture will cover the cost.

She did mention that other systems could cause him not to grow...his heart, lungs, etc., though he "seems" to be healthy and thriving, she has no suspicion that there is anything else going on other than his growth hormone being low.

So, there you have it...I guess he got his "Diagnosis Day".  I still don't feel like we have all the answers, but I do feel relieved that we aren't ordering a CT Scan or MRI or other mounds of tests.  I expected to get an either/or...either he was growth hormone deficient, or he wasn't.  I never knew falling in between was an option, so I wasn't quite prepared for this.  I feel a sort of emptiness, a lack of having any real answers.  His "diagnosis" refers to extreme short stature that does not have a diagnostic explanation (idiopathic designates a condition that is unexplained or not understood) after an ordinary growth evaluation, hows that for an "answer".

So, now...I have to ponder on my choice...where do we go from here?  My immediate response is "No Way"!  Growth hormone therapy, is not worth the risks, not worth the pain, and not worth the small amount of growth it may provide.  For now, I think I need to leave him the way that God intended him to be :)


  1. That is a tough dilemma. Hope you get it sorted soon maybe a second opinion as the numbers didn't make sense to me either:( Hang in there

  2. Wow. That is a lot to take in on a phone call, but also not as clear as you were hoping it would be... I'm sorry. Hope you can get some more answers soon to help you make all the right decisions for your little guy.