My daughter was admitted into the hospital last week due to high blood pressure.  I had posted this earlier and I have to say there are many wise people on this board.  Thank Goodness!! Now comes the good part.

She was diagnosed non-classical CAH at 9 years old.  She had had pubic hair since she was 6 and my PCP at the time said not to worry about it.  I started goint to another PCP who immediatley sent her to a ped endo.  The endo did the ACHT Stim test and checked for PCO, which she didn’t have.  

When the testing came back the endo said it was definitly LOCAH.  She put her on Cortef at that time.  Within the past six months she changed it to Predisone 5mg, in a.m. and 5mg in the p.m.  She was having panic attacks and so forth and I took her into the hospital and her BP was like 164/109.  I begged for an endo consult with the doctors at Children’s and they said she didn’t need it because after a dose of BP meds it came down( it went back up again).  

I made an appointment for Tuesday at Children’s in Pittsburgh and the doctor said according to the values on her ACHT test he would not have given her a CAH diagnosis.  He wants to wean her off the steriods.  He did change it to Cortef.  He started her at 10,10, 10 as he said that is evven less than equal to the Predisone.  She had been over surpassed, but didn’t need her adrenal glands suppressed.  He said she has some type of adrenal problem where she was producing too much testergone (sp) and MAY need a small dose of a hydrocortisteriod.  He won’t know untill she is wean off and he can do a new ACHT test in April. My daugher is 16, 5’1, 164 pounds, always trying to loose weight and was absolutly hysterical.  Her who life would be different.  Some of you may remember, but she was kicked out of Catholic School due to CAH, lots of media attention, had  to go to a new school, was suicidal.  It was awful.  This Board really helped us then.

I called her other endo, who is a pediatric doctor and she says Vhildren’s doesn’t like her and do this all the time.  She said the 10 mg of Predisone was certainly not high.  She said if they take her off her meds she will end up very hairy and overweight!  

 

I am so so confused as is my daughter.  I don’t know what to do.  There is such a difference in opinion also.   After the administration of the meds ( I don’t remember) her 17-Alpha -hydroxy went up to 323 NG/DL.   He says he looks for numbers of 1200 for CAH.  He as in Childrens.    

 She was emotionally upset before, now  I ma taking her to an outpatient clinic for everyday therapy after school.

I reaaly need some insight.

 

Thank you