our son is 10 months old and was diagnosed with having cah at three months of age, not because he was having any problems or crisis.  but because he had an slightly elevated newborn screening test.  my husband and i requested that he be seen by the endo and that is when they did a acth stimulation test.  (my husband has cah also)  for there they put my son on meds and we had genetic testing done.  it confirmed that he had cah, but that he had nonclassic cah.  which many of times doesn’t need treatment unless they are having signs and symptoms of the condition.  so they weaned my son off his meds having he had a low 17-ohp.  we took him to see dr. new in new york and she conformed that my son didn’t need to be on any meds at this time.  we just monitor his height, labs and any other signs that he might have that indicate that he might need meds. 

so there are many of children that don’t need meds.  just because our son isn’t on any meds doesn’t mean that he doesn’t have cah, he still has two mutations which makes him affected.  there are different levels of cah, swcah, svcah, and nccah.  there are many of times that children don’t get diagnosed till age 5, 7, 10 and up that doesn’t meant that they didn’t have cah till they were diagnosed.  they had cah all along, they just weren’t diagnosed.

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 I am aware that there are different severities and types as I have been using the board for some time and looked into them over the coarse of that time.  I am also aware that some cases of cah are not treated--but not in children.  Yours is the first case actually--it’s a new one on me.  However, if your son’s levels were high enough to be picked up at new born screening, surely they are high enough to cause a problem with growth.  i realise that some arn’t picked up because they are less severe though and that it takes much longer to cause a problem  I thought that the whole point of newborn testing was to actually avoid the acceleration of growth and to use the test results as a way of replacing what a child may need in the way of cortisol.  obviously some Doctors seem to feel it is ok for children to be exposed at the risk of not reversing the above once it happens.  Or that we have took a huge step backwards when we could have used such diagnosis to avoid complications as they arise for untreated children.  it will be interesting to see how you fare without the treatment.  Some cah people have it so mild they arn’t picked up until adulthood.  I personally feel knowing as much as I do that prevention is better than cure or other drugs being brought into the play such as androgen blcokers or GH therapy if things take a turn for the worse and untreated children develop symtoms of precocious puberty. 

Are the tests very frequent?  I would not acceot them anyless than 3 monthly actually after seeing what can happen when my son is just a tad under treated (which is virtually similar to a mild version of CAH or deficiency really--no different) in six months flat.  But then  I feel that any abnormal acceleration of growth (no matter how small) is not a good idea for these kids.  To not treat adults fine--they can’t hit precocious puberty--and they know when they don’t feel to good or things are not right--but a child?  After the studies I have read about elevated androgens causing boys and kids in their teens to be more wreckless and aggressive, I don’t think I really agree with your Doctor.  But each to our own.

 

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I hope that this helps you, that they are children that are diagnosed but don’t need meds.  the newborn screenings were developed to pick up swcah patients only, but some times it picks up other children.

tonya