Hi Kiely,

Glad you found the board. Also glad to hear that you got a second opinon. There are lots of good doctors and lots of good ped endos, but they aren’t all up on the best way to treat CAH. When you first get the diagnosis everything seems very over-whelming (I cried for 2 weeks!) Now it is just a matter of everyday life.

There are several parents on this board who have children with non-classic (sometimes called late onset) CAH. So they will probably be of more help than I. There are also many families on this board who have had children after having a child affected by CAH.

Typically the side effects from Cortef come if your child is being over-treated (receiveing too much Cortef).  Cortef should not make your child more fussy.  If she has just started on Cortef, then she could perhaps have an increased appitite, which would then make her extra fussy (in particular if she isn’t very verbal yet).

Concerning bone age -- when diagnosed at 15-months, by daughter had a bone age of 24- to 30-months. When her last bone age was done in May at the age of 4.5, the bone age was at about 4-years. 

A good place to get some information is from

CARES Foundation http://www.caresfoundation.org/

MAGIC Foundation http://www.magicfoundation.org/

Johns Hopkins has a great write up explaining CAH

  http://www.hopkinsmedicine.org/pediatricendocrinology/cah/index.html

Best regards,

Janet