Hi Bonnie,

 

Most ped endos wouldn’t treat your son, and if I remember correctly, you’ve had trouble getting the ok for treatment.  There is a very good reason for this.  Meds can do far more damage than the slight increase in androgens can do, especially for a boy.  You’ve already seen this with the prednisone.

 

If I remember correctly, you are alarmed by a bone age increase of 2 years in the span of 1 year.  Before starting steroids for your son, perhaps you can wait 6 months and have the bone age repeated.  Even with the same radiologist reading my daughter’s x-ray, her readings have jumped both ahead and behind.  In the short term, bone ages are simply not reliable enough to dictate treatment decisions.

 

I’m sure I don’t have the whole picture here.  If your son’s androgen (testosterone, androstenedione) levels have been significantly elevated over a period of several months or years, it may be time to treat.  Remember that 17-OHP and androgen levels are different for CAHers and unaffected children.  If you dose to keep your son’s levels completely “normal”, you will almost certainly see problems with growth and/or unhealthy weight gain.

 

I am a huge advocate of circadian rhythm dosing.  It made a world of difference for my girls.  However, adopting a 4x a day (starting at 3am) Cortef schedule is a big commitment and has lifestyle consequences, and it would not be my first approach even if you decide to go ahead with treatment.

 

Please feel free to email me if you don’t want to continue this discussion in a public forum.  I’d be happy to look at test results with you.  I know it’s hard to feel that you are doing nothing in the face of something bad happening to your child, but with CAH the best treatment is often the minimum treatment possible.

 

With best wishes,

 

LauraK