http://www.caresfoundation.org/

Contact CARES and read their web page to find out more about CAH and networking with other parents of children with CAH (by the way - Dr. New is an advisor of CARES).  She saved my child’s life - Adam in 1998 - he was on the liquid cortef and it was not working - my 2 year daughter, Jessica,  did die from adrenal crisis and was on the liquid cortef on 1 Sep 97.  It was terrible lost - I had my son 9 or 10 months after her death and then I thought he would die too.  My called her (Dr. New)  and she consulted with my local doctor and switched him from the liquid cortef to the pill - IT DID SAVE HIS LIFE.   Too bad I didn’t know enough to go to her for my daughter or she would be alive now.  My advice - get the BEST doctor you can find!! You don’t get a second chance with CAH. Jessica’s levels were off for almost a year and the now did nothing - in Fairfax Virginia - and then it was too late with a fever - her partner in her office - insisted that I just double the cortef for the fever and STOP calling him. In the morning - Jessica was in shock and died - brain dead after her heart stopped in the emergency room - about 1 or 2 on the emergency room and then revived but no heart beat for 45 minutes. After 48 hours in the PICU they said she was brain dead and took her off the life support. Jessica would have been 8 years old this year in the second grade.  She had an older brother - 1 year older - the doctor had increased his cortef - and he was older 3 - almost 4 years old.  His levels were off too - but he didn’t have a crisis because the doctor changed him to the pill form of cortef at age 3.  It is hard to repeat the story about Jessica - but I hope it save a child’s life. I miss her so much!

If you have any questions - contact CARES. The phone number is toll free.