Dr. New’s research is solid.  She has presented the data at the endocrine society meeting this June with a great response. She has published the results of the first two years admininstration of GH to CAH children with advanced bone age in a peer reviewed journal (Journal of Clinical Endocrinology and Metabolism. 86(4):1511-1517, April 2001.)  The data is impressive and for me, if I had a child with advanced bone age, I would certainly investigate enrolling in her study.   I don’t know whether the study originally enrolled only kids with advanced bone age, or this is the group for which the data is good and impressive so far.  I don’t have first hand experience with GH, but the medical literature on it is tremendous.  It does not seem to have mentionable side effects, other than site of injection discomforts, and when it succeeds it is great, and when it doesn’t it has not shown any detrimental effects.  It has been and is being tested in pretty much any condition related to growth and vigor that some Dr. somewhere could think of.  It has  even been administered to the elderly and shown to increase muscle mass and help with osteoporesis.  Last year there was an aritcle in the same journal (I don’t remeber which issue), about a study where short children with no endocrine disorders, just generally short kids with probably short parents, where given GnRH analog (lupron) and GH.  The study showed that in general they could increase the predicted height by several inches.  This did create a controversy in the endocrinology field.  It is an ethical issue of what’s the point, and is 2 to 3 inches of height worth $40,000.  By administering drugs at the right time, we can probably make a population of gaints.  But Dr. New’s research does not fall in this category.  The controversy was  based on our scientific knowledge at the time, GH shouldn’t do much for people who can make GH.  It may just change the timing of growth to an earlier phase.  But the data clearly shows that in the case of kids with advanced bone age, GH allows them several additional inches of growth. 

We all have opinions and passions about things, especially our children’s health and well-being.  My personal opinion is that if your child has lost growth opportunity already or is not doing well under the care of your endo or the standard therapy, by enrolling in a study you have already increased their chances of optimizing their treatment, because they are monitored more thoroughly.  But with that you give up somethings too.  Your child is probably poked and prodded  and measured a tad more than he otherwise would be; you may have to travel longer distances for your appointments; imagine an emergency room trip, where the endo advising them of treatment is 3000 miles away.  Most of these things may be or not be a big deal to you; they may be a sacrifice worth making or not, but they are for you to decide.  As far as Dr. New, I have heard different stories about her bed side manners, but her research is top notch.  Now that I am at it, I should put in a good word for Dr. Merke’s study too.  For her study, I would recommend that if your endo seems clueless, your child needs to be on the higher end of the steroid dosage scale, or is gaining a lot of weight on the current dosage,  and CAH medical care is costing you more than you can afford, you may want to give her a call!

I wrote so much, I gave myself a headache:)