Hello, I am Jen and my foster dd has CAH. We got a call from Texas Department of Health about her newbon screen when she was about 14 days old. We were to go to the Children’s ER and have her 17-hydroxyprogesterone (17-OHP) and electrolyte levels checked. Her initial levels were 106 for the 17-OHP and 5.3 fo potassium, glucose and sodium were normal. She had also lost 1lb since birth and then rebounded to her birth weight. We were just told to continue to monitor her levels and weight every few days at her primary care doctor. About 10 days later her 17-OHP had risen to 169 and during the same period her potassium went up to 5.9 then fell to 5.6. During this time she has also exhibited periods of tachynea (rapid breathing) which 5 days ago led to an ER trip and 48 hr. stay at Cook’s Childrens where her respirations per minute would peak at 120 to 140 fo several minutes and then return to a normal 40 to 60. She also experienced periods tachycardia with heart rates over 205 beats per minute. These episodes also would persist for a few minutes and then return to baseline levels of 140 to 160. O2 Saturation held at 97% the entire time despite the tachynea. She weighed 8.8 lbs (about 2 lbs. over her birth weight. Tests peformed at this most recent visit included CBC, Pertussis, RSV (Respiratoy Syncial Virus), LP Spine (Lumbar punctue), Chest X-Ray and 48 hr. Blood, Urine, and CSF (cerebral spinal fluid) cultures. All cultures were negative, chest X-Ray was clear, RSV was negative, white blood cell count was normal. Absolutely no sign of infection. The doctors were puzzled by her breathing so she was admitted for observation on a heart/lung monitor. Nothing changed and she was released with the doctors saying it was some unknown upper respiatory virus despite the lack of fever, the normal white blood cell count, absence of sinus discharge or drainage, no sneezing, coughing or wheezing, and no swollen glands. The only remarkable result is her CSF was yellow indicating elevated bilirubin.

Our current situation is at 5 weeks old her episodes of tachynea are becoming more frequent and last longer. She sleeps most of the time, can rarely stay awake for more than 20 minutes. Her appetite is decreasing since she can’t stay awake long enough to finish 4 oz. without constantly waking her up, which is very difficult. Her primary care doctor doesn’t know anything about CAH and doesn’t think anything is wrong (She didn’t even open her diaper to see her enlarged clitoris. The ER doctors including two attending physicians are intriqued but baffled. The expect her primary physician to follow up. We can’t change primaries because the TDPRS (Child Protective Services) can’t get her appropiate medicaid documents (they just say its pending and that all foster children ae covered.) No other doctors especially endocrinologists will see her without a medicaid card in hand. The other similar case we found in medical journals were an infant had similar slightly elevated 17-OHP levels, normal electrolytes, elevated bilirubin, mild to moderate clitorimegaly, tachynea, lethargy, and loss of appetite required immediate steroid treatment. In one case the infant’s breathing got so bad they had to be intubated.

So do I wait till her breathing gets so bad it requires intubation to get someone to listen and undestand, or show up at an endocinologist’s office without an appointment and refuse to leave before they see her? Is this standard way they treat foster kids with medicaid. Any help would be appreciated. We ae willing to go to any doctor from Houston to Dallas but the closer to Dallas/Fort Worth the better.