roberta3 year with a bone age of a 7 year old!!! And virilized!! Hello!!! Awake up!! I would be angry at the doctors too!!
Again - I hope the best for your daughter (she is alive - that is a good thing - she didn’t die from an adrenal crisis - my daughter died at age 2 from an adrenal crisis and I am still numb and ... well... no words can describe the pain!!).
If she is non-classical it is USUALLY not as severe as the salt wasting form (but non-classical can range from severe to mild). Good thing about non-classical with proper levels of cortisol the virilization can be reduced. The growth can be managed with better management. GET A GOOD DOCTOR!!
Is she classical salt waster (from birth) or non-classical?
Educate yourself about CAH. Join CARES. Find a good doctor!! I hate to say this twice but I really do feel for you - and I know your anger (even more so)!! Email me anytime!! I have a 4 year son and 8 year son with salt wasting CAH... and one son (new baby - one year old) and he does not have CAH. Enjoy the blessing of having your daughter! I love my boys with CAH and they are very smart and NORMAL kids. My daughter would have been too... she shouldn’t died. Her picture is on the CARES web site - in loving memory.
Be careful with fevers!! And vomiting and diahrea...serious injury. CAH child can die from a common illness if the cortef is not increased (and IV fluids, electrolyte balanced - salts and sugars, the blood pressure drops, the brain swells, coma and death). Triple for a mild illness (fever 99 to 100)... if the fever 101 - watch very carefully and it needs to reduce within 30 to 45 minutes with tylenol or motrin and triple the cortef immediately. Do not wait for the next dose. Say you gave cortef at 8 am and needs triple does immediately with the fever at 10 am . .. Write down the does - repeat every 6 hours! Keep the fever down. Wake for medications. Sleepy or legartic CAH kid can be in a coma. ALWAYS have solu-cortef with you. The ambulance won’t have it. The ER will have no clue on what to do and they could wait too long.
Roberta
Roberta