I would be the last to criticise anyone’s decision.  I did feel the need to point out the pit falls though.  There are studies done that confirm GH advances bone growth, and it is a genuine concern that some days, weeks or months a child may not need GH shot--but they will get it anyway.  Sometimes people like to have these problems brought to their attention so that they can mull them over.  I know some of you perceive that the questions I raise may make things more difficult where decision making is concerned.  However, if there is going to be a problem crop up for a child on GH who grows out of their cortisone dose for a month or two before they are due to see their Doctor or have labs---(because sometimes it is not exactly something we see because they look quite healthy)---then I am almost sure that most people would rather see the pit falls right here and now and look at the possible disadvantages before   they make such weighty decisicions. 

I’d also like to point out here that what started as a mere study and experiment, seems to be snowballing into many other parent’s jumping on the band wagon before they even see the study over and see that the results are reasonable.  With CAH we all know that it is simply not true that our children have a lack of GH ALL the time.  It is generally only just after dose raises that they may be lacking--but they MORE than make up for that when they start to tip the scales in the opposite direction and start to grow into that dose.  Now if you were talking about a person who could not make GH full stop and who did not make large amounts of androgens either---they that treatment would not be so risky.  However, this is not the case is it?  At times they will out grwo their dose---their 17 OHP levels will start to rise and also their GH and other levels and it may not be for a month or two that this is picked up.  Now if they are going to devise a therapy for a group of children who are "sometimes" deficient in GH--they need to test that GH is deficient for several months (6 at least) prior to starting the shots to be sure that they really are at ALL times deficient in GH. 

Even then those tests would be NO indication that the child is unable to make such themselves.  In fact CAH kid’s can and in fact they are quite capable of making TOO much at times when they have outgrown their med’s.  This see saw effect is what eventually brings them to no less than 5cm shorter than the average population height.  They generally lose 5cm.  However, later diagnosed kids lose a great deal more all at once and to my mind all they really need is the Lupron at the most and then the corticosteroid dose set at a more decent level for GH to be secreted.  For this they NEED to test that GH is secreted---and I cannot see why they have not worked at devising a way of testing this on a daily basis.  Let’s face it--some folks will be giving their CAH kids shots without really knowing if they need them that evening.

Also, if you take away the reason why these kids are not really making much GH at night when they should do--which is a large cortisol dose last thing at night--which suppresses GH---then I don’t see why they cannot tap into that instead of injecting stuff.  Just a stay in hospital to re organize dosing schedule and doses to achieve the right levels every now and again seems less traumatic than a shot every night if your going to argue that a stay in hospital every now and again is traumatic.  As for athletes and ballet dancers taking the stuff just to enhance their chances in their careers--well, I don’t have any problem with that because THEY don’t and can never make AS much as what my son could make if he outgrows his current cortisol replacement dose can they?  So they are not going to have as large an acceleration of growth and bone age if this happens for the odd month.  We need to use a little common sense here---because GH every day PLUS the extra GH in periods where they make it and they get the shot too equates to TOO much GH full stop.  I did post a study some time ago that confirmed that these kids who have GH still end up short stature despite their treatment as it advances bone age.  Will have to find it again, but basically it outlined that this is what is happening for some kids who were on it--and they may not have CAH--so we are talking about children who do not have adrenals that can possibly make as much GH as a teen can and more at any point in time---and that was my concern.

I realise that we are all reliant upon such studies and without them our kid’s would not be alive.  but there is a distinct difference between being alive and well and being alive and possibly having side-effects from something that needn’t have happened.  Parents should be fully aware of the risks of such "additional" treatments before they embark upon them--not be left in the dark and made to feel angry ten years down the track because these things were suspected but no one took the time to inform them.

I don’t pass judgement on anyone for looking at such therapies, but it needs to be pointed out that at present it is purely experimental and may not produce any better height from the kids than what they would achieve if they were otherwise left with just corticosteroid treatment and say Lupron.