I would sue the doctor.  Do you wait too long.  You must sue immediately because of the statue of limitations.  So the clock is ticking!! Go to search engines and click on find a lawyer in your state!!  And you should be angry. I do not see any reason why this doctor should get away with what she has done!! Was this a ped endo doctor? I think the newborn testing (heel stick) - did not test for CAH.  In Virginia - we only starting testing this year (and that was because I called my Senator’s office and lobbied for it;  then other parents testified and supported it). 

CARES (Congenital Adrenal hyperplasia, Research, Education and Support) can help you.  Go to www.caresfoundation.org  and call 1-866-CARES37 or 1-973-912-3895 and talk to Kelly Leight (director - she has a child with CAH).  You can email or call me anytime too - Roberta Preston - 703-370-4611 (home)  or 703-697-7357 - work;  (I am moving on 1 Nov to Germany).  robertapre@msn.com  It is great to talk to a real person!

There is a links on her web pages with several great pamphlets on CAH and patient handbooks.  Print them and make a notebook.  The NIH pamphlet and the John Hopkins patient handbooks are great.  Also go to the Australia web site and Dr. Gary Warne has a great little booklet on CAH (how to explain to a child or grandparent  - what is CAH).

To tell the grandparents - tell them that she doesn’t make enough stress hormone from the adrenal gland for illness or injury.  That she will have to medication all her life because her body doesn’t make enough.  And if she is ill - then she will need more medication (IMMEDIATELY) or she can do into an adrenal crisis and die.

How did she get this? - it is a genetic condition. She was born with it.

Will her children have it?  No - unless she has children with a man that has it or carries the gene for it.  Both parents have to carry the gene for CAH. They do not have CAH but they carry the gene for CAH.

She will be fine.  Just be very careful with illness with her.  You need need to triple the cortef for a 100- to 101 fever.  A higher fever or if legargic - you will need to give the solu-cortef injection.  You must increase the cortef immediately.  You can not over dose on cortef but if you do not give enough she will go into an adrenal crisis  (coma and death).  For vomiting - double the cortef if she vomits once; if she vomits twice or more (with in a short time or repeat vomiting) - you give the injection.  Call your doctor and tell them that you want her admitted to the hospital for IV treatment for 48 hours.  Monitor the blood pressure and oxygen levels.

The asthma - I would get an second opionion on that too.  Was it asthma or flu - a flu that was hard to fight because of the CAH? Especially hard to tell with a toddler and could be a misdiagnosis too. You were lucky that it was not high fevers and adrenal crisis - she would have died.  Be careful with illness! You may not too many more chances!!

I hope you get a good ped endo doctor!! And again - she will be fine.  The virilization or enlargement should reduce now that she is taking the cortef (that is what I have heard on the message board - I have boys).