A Little Medical Update!

No pics this time, just a little medical update about Macy. 

Macy has been diagnosed with Severe Primary IGF-1 Deficiency.  This is different than a Growth Hormone Deficiency. This is a rare condition....1 in 10,000 to be more precise.  A person with Severe Primary IGF-1 Deficiency is smaller than 99% of their peers, has had a formal test for growth hormone deficiency and is producing an accurate amount, yet has an IGF-1 deficiency.  IGF-1 is Insulin-like Growth Hormone Factors.  We believe this deficiency is due to her liver malformation. 

Our endocrinologist found the supplement that they would like to start giving to Macy.  It is called Increlex, and is a 2 time a day shot.  Fortunately we will be trained by a nurse at our house so that we can prepare and give the shots at home daily.  We have started the process of getting this medicine.  This referral process can take months to get going.  The first step was for our doctor to fill out and send the application and paperwork for medical necessity.  This goes to the company, then through insurance, then back to the company, and so on a so forth.  Insurance could deny coverage, so prayers for coverage would help! 

We will still be visiting our GI doctor later this month to discuss her liver and if or what we need to do next.  Our endocrinologist is also discussing this new med with Dr. Hainline (our metabolism doctor), due to some side effects.  The main side effect is hypoglycemia (low blood sugar).  Well, Macy is already hypoglycemic, so we can not allow room for an additional drop in blood sugar, so we will need to tread lightly with this.  We will need a plan put in place, and we will need to monitor her blood sugar carefully.  At this point, I have no idea if this will be something we will have to do at school, or how often it will need to take place.  We will just wait for word from the doctors and go from there. 

This is very difficult for me for many reasons.  1.  I am not a patient person!  2.  I am a very detailed person when it comes to Macy's medical care.  3.  I worry myself sick about medical unknowns (literally sick).  4.  I am simply a mother, and just want the best for my child. 

Macy knows we are trying to find answers, but Jeremy and I have decided not to tell her anything until we know for sure and have a plan.  She has a lot of anxiety, therefore there is no reason to provoke it.  We will keep you updated as our questions are answered.  Thanks for continuing to follow us, and for praying for our family (particularly our sweet Macy).