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My daughter is 6 years old and has SWCAH. Since July of last year, after a dosage adjustment her weight has just ballooned. She also did not grow much and the worst part is her blood pressure is very high. We saw the Endo in December and he brought her dose down and since then, she has grown some, her weight gain is still high but her blood pressure is in the 100th percentile ( extremely high ). I have been going back and forth between the pediatrician, endocrinologist and cardiologist trying to find some answers and have had no luck. The endo flatly refuses to even consider it an endo issue because according to him, she has been on the standard florinef dose since birth and there is no reason for it to cause BP now. He does not think her cortef is too high either. In any case, his argument is that her BP was fine before July and a dose increase of 1 mg will not cause BP to go up that much.
The cardiologist thinks that the BP measurements were always wrong, to begin with and that she has always had high BP and certainly warrants a dosage adjustment. I'm still waiting to see the nephrologist next week.
Has anybody ever faced any situation like this ? What did you do ? I thought CAH kids inherently did not have a problem with hypertension because they are risk for the opposite from salt wasting. I am so lost and don't know where to go with this.
