What I meant to say was I realise that we have all these drugs now that can be used if the worst come to the worst and a child slips towards puberty untreated or inadequaltely treated.  Perhaps that is why some Doctors have been able to relax and decide that it is ok not to treat a child--even when their levels were elevated enough to be picked up at newvorn screening.   However, I would have to say that the sensible course I would have thought was to work at prevention rather than cure and that since we have no clue what childhood illness can effect from one three month tests to the next ( that’s if your even having blood tests this frequently) .  To risk the opposite seems almost courting with disaster really when you consider that there are no long term studies in the drugs that are being tested to fix the problem--i.e. androgen blockers etc.  Plus the much higher dose of steroid one may need to resort to if one leaves things too long (this may happen if a child goes into precocious puberty) as opoposed to the relatively small doses one may need if one starts to treat staight away at diagnosis.

Thats why I say it will be interesting to see how your child fares.  I hope that he does well and is looked after well.