Stephen:
I've got three kids, all with CAH. Our oldest was diagnosed after an adrenal crisis at two weeks and we had a similar situation recently with our youngest.
In spite of the fact that our daughter was diagnosed and treated in the womb and since birth, our little two month old girl was admitted to the hospital three weeks ago with a potassium level of 8.4. She spent 12 days there, and was in and out of ICU a few times as her levels fluctuated. Each time it got over 7 they put her on intravenous medication and gave her a (not sure if I'm spelling this right here, so I'll do it phonetically) Kaexelate enema. The improvement was dramatic and immediate. However, having brought her levels down, they returned her to oral medication and we would watch over 48 hours as her levels gradually climbed again. We went back and forth between intravenous and oral medication several times during her hospitalization. The doctors speculated on the possibility that it was an absorption issue--in other words, that her body was not absorbing the medication properly when taken orally, and that perhaps this was why her levels improved when the meds were administered intravenously.
Ultimately it was the opinion of our specialist that her body was simply taking time to adapt to the medication. He said he's seen it many times in his career. In the meantime she is now taking about 6 times as much florinef as her older brothers and about the same amount of cortef (also, the specialist switched her from hydrocortisone, the generic medication, to cortef, the brand medication, because he had mentioned something about the generic medication not being as effective in this instance). Additionally she is taking sodium chloride orally every six hours to bring up her sodium levels.
We don't know exactly how well the approach is working yet, as she has only been out of the hospital for one week and we are awaiting blood work results. However, her appetite is markedly improved and she's gained nearly a pound in the interim. The endocrinologist saw her today and was very pleased with her progress.
I hope our story helps. I don't know how much of this could apply in your case. Obviously only a doctor could say for sure and that's who you need to talk to. But it doesn't hurt to run it by the doctor and see what he or she says. I know its hard to have faith in physicians when you're watching them struggle for answers. Hang in there.
Good luck and God bless you.
