And the GH test results are…

Hi Cami and Mike,



The growth hormone stimulation test showed that Trey is NOT growth hormone deficient.

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…along with the answers to my first thoughts/questions.



Cami,



I’m going to answer some of your questions and then we’ll talk more if you want.



Is this is not the results we wanted, correct? Yes and no. It is good that his pituitary is working, but yes it decreases the likelihood of a good response to growth hormone. Studies in idiopathic short stature typically have 50% response rates, but of course there are no data in MPS IV or any other MPS.



Will it be so much harder to get the insurance to cover it now? Depends on the insurance, some cover idiopathic short stature and some do not. I may have to write a letter requesting a 6 month trial which they sometimes will agree to even if they denied the first request.



Is there a scale of “how deficient” Trey is in GH? Not really, if the GH goes above 10 during stimulation test, this is normal, there is some grey zone with the test but Trey was not there. His peak GH was 19.6 so he had a very normal response. His IGF-1 remains low though, which suggests he may benefit if we can get the IGF-1 higher with GH treatment.



Is it possible that if he is very low, when you introduce a higher level of GH, could it “kick start” it? No, unfortunately the pituitary cannot be “kick started” like puberty can be. And his pituitary is working normal, he’s just not increasing his IGF-1 which is the main growth factor.



I hope this helps. Once I hear from your pediatrician, we’ll move forward with the request for coverage under the diagnosis of idiopathic short stature



Lynda Polgreen, M.D.

Assistant Professor

Pediatric Endocrinology

University of Minnesota