Bill

My son 20months now was born 8 weeks early. He has SWCAH. His endo said the same exact thing at 9 months of age.

He was on a very low dose of the meds and able to sustained very "normal" levels was growing gaining weight and we never had to change his dosage. He also had high blood pressure because of the florinef. He still remains on the smallest amount at 20 months. The same amount he was on at 4 months. He told us he didn’t think he had CAH just premature adrenals that caused him to have such high levels in the NICU.

We had genetic testing done on him to confirm. He does have CAH. Well it could be a lot worse! We can treat and my son will live a normal life with CAH!!!

The genetic testing on my husband and I also gave us more information about our sons CAH. He could possibly have SVCAH due to the kind of mutations that were found. This would make sense as to why he sustains such normal levels on such a low dose of meds. CAH is confusing and no two cases are the same.

At times I think having a premature baby is more difficult than the CAH. 20 months into this we are almost all caught up! He runs, plays, talks and acts like all his non preterm buddies. Best of luck to you and your wife.

Amy