The Medical Saga Continues

We recently had to go through growth hormone stimulation testing with Matt-man.  His height percentiles have been steadily dropping over the past few years (from about the 80th percentile down to the 3rd percentile).  In the last year he grew an inch at most (should be growing about 2 1/2 inches per year).  He also is extremely delayed in developing muscle mass, which we assumed was due to the 15q24 microdeletion, but it is also a very common symptom of growth hormone deficiency.  He really just looks much younger than the other 4 year olds we know.

We finally heard from the endocrinologist yesterday (13 days after his testing) with his final results.  It turns out that Matt-man is indeed growth hormone deficient.  I don't really know if this is good news or bad news.  I am SO glad to have more answers.  I want to provide him with the best care possible, and we need all of the information to be able to do that.  The good news is that we now know why his growth and physical development seems to have significantly slowed down over the past year.  We can now help him by providing daily injections of growth hormone to replace what his body isn't producing.  It will not be fun, and there are possible side effects of the medication, but the risks of not replenishing his growth hormone are greater.  Without growth hormone his bones will not grow like they should.  He won't metabolize fat and sugar like he should.  He will always have poor muscle mass and low stamina.  He is more likely to develop high cholesterol and die from heart disease.  It is good news to know that we can treat him and prevent these things from happening down the road.

The bad news is obvious - he has just been diagnosed with another chronic disease.  He will at least need daily injections through puberty, and there is a chance that he may need to continue them throughout his life.  Nobody wants this for their child.  A part of me was hoping that not growing was just a part of the 15q24 microdeletion syndrome and that he would be completely healthy in spite of his size.  Also, growth hormone injections are atrociously expensive.  My understanding is that at his weight (about 33 lbs), the weekly cost of his medication at retail prices would be in the $400 range.  This will increase as he gains weight and grows.  I am grateful to have good insurance right now and have been reassured by an endocrine nurse that there are several options available to provide financial assistance to those that cannot afford growth hormone therapy if we ever find ourselves uninsured in the future.  Right now we are awaiting insurance approval before we can start therapy.

Please keep Matt-man in your prayers.  He is such a sweet soul, and he will not understand why he is getting shots everyday.  Please pray that he will respond well to the medication with minimal side effects.  Pray that Danny & I will have the patience and understanding to be better parents to all of our children through all of the unexpected challenges that have arisen over the past couple years.  Loneliness and discouragement are a constant threat.  Thank you to all of you who have come alongside to support and encourage us in this journey.

Matt-man going through the arginine and insulin stimulation testing for growth hormone deficiency