Growth Hormone Deficiency

Growth Hormone Deficiency (GHD) is generally due to the pituitary gland being unable to produce sufficient GH to generate the growth process. GHD does not affect intrauterine growth, at least to an extent measurable by birth weight or length, but from the second year of life growth is slower than normal and occasionally growth failure commences from birth. Most cases of growth hormone deficiency are idiopathic, meaning of unknown origin. Idiopathic growth hormone deficiency occurs, it seems, in about 1 in 3800 births.

We met with Haven's Endocrine doctor on June 20th and discussed Haven's need for growth hormone.  She has stayed in the 5 percentile since Hi CY. We decided we would check the levels and see where she is.  We received an email that Haven is at a level 71.  A normal IGF-1 level would be around 250 or so - with a very low at an 88.  Normally, a child grows about 2 inches per year. A child with growth hormone deficiency usually has a growth pattern of less than 2 inches per year. In many cases, the child grows normally until he or she is about 2 or 3 years old; then, signs of growth delay begin to show.  We were told that Haven will need to grow 2 inches by December in order to not be put on the GH treatment.


Haven may have to do a stimulation test before treatment.  What is this?

• GH stimulation tests help to diagnose GH deficiency and hypopituitarism. For a stimulation test, a sample of blood is drawn after 10-12 hours of fasting. Then, under close medical supervision, a person is given an intravenous solution of insulin or arginine. Blood samples are then drawn at timed intervals, and GH levels are tested in each to see if the pituitary gland was stimulated by the insulin (or arginine) to produce expected levels of GH. Other GH stimulants include clonidine and glucagon.

Treatment?

• Growth hormone deficiency can be treated with growth hormone replacement therapy. A drug called somatropin or growth hormone (Nutropin, Genotropin, Norditropin, Saizen, Humatrope) is injected into the fat underneath the skin. Shots are usually given daily.

As of now, we are on hold until December.  We will make the final decision then to put her on the daily shots for the next 5 years. 

These treatments are EXTREMELY expensive and have me a little concerned.  We spent $11,000 out of pocket one year and were told it wasn't enough for a tax write off.  The Growth Hormone treatments can cost us between $10,000 and $40,000 a year depending on insurance.  Guess there is no need to stress yet.......