Marcia, my son had problems with the control of his SWCAH for several years.  The doctors spoke about an adrenalectomy but you can have rests, so even with the adrenals removed, you can still end up with problems.  My son’s doctor Professor Peter Hindmarsh, from Great Ormond Street Hospital London, came up with the idea of using a pump, which is used for diabetics.  This is set to slowly infuse hydrocortisone continuously at rates which mimic the circadian rhythm, within hours of being on the pump, his levels came with in normal limits and they are now perfect, and have been for 18 months (since he has had the pump).  His general health has improved, he is growing and his weight is perfect. We have the extra bonus of being able to use a bolus button for extra hydro when needed, and the pump is set to different rates which are easy to switch, eg double when ill.  I would suggest if you are interested, to get your daughter’s endo to look into this. My son was on 6 doses of hydro a day, before we started. Good luck