Don’t blame yourself.... it wasn’t for you then she wouldn’t be born. CAH is treatable.  My point was to take a more aggressive role in the CAH. You are obligated to do that as her mother.  Most ped endo are not experts in CAH. The only have a hand full of patients with it and the focus more on the larger number  - the  diabetic.  You are in the majority here!!

 The doctor may be prescribing too much cortef and too much dex is the answer - maybe worst.  More is NOT better.  Too much or too little can lead to infertility and growth issues. Again she may look tall now but end up as a short adult because the bones will fuse too early. It is usually a bigger problem with longer treatment as a toddler or infant (born with CAH and with treatment from birth or the non-classical or non-salter that was treated as a toddler). 

Dex or cortef doesn’t cause infertility - bad management of CAH - causes infertility - EVEN DEATH (with under treatment and not the right treatment during illness).  So over treatment is better than undertreatment (and death) but stil it is the best thing.  My Jessica died at age 2 from an adrenal crisis and fever. I would give anything for her to blame me.... I should have been more aggressive (The endo on call said to double the cortef and stop calling him - what stupid advice!!! And I listened to him and let her go to sleep with the fever and doubled cortef and in the morning she was in shock and died).  Don’t be like me and have the "should have, would have... could have... all your life.

I am sure your doctor would not mind you call (or she/he can call) Dr. Maria New at Cornell University or Dr. Debra Merke at the National Institute of Health.  Or you can take her to see these doctors for a second opionion or to follow her care. 

Kelly Lieght of CARES - is going to post medical travel assistance information on her web site (CARES).  Or call her - she can help you.

 

Roberta