This is somewhat long, apologies in advance.My daughter was diagnosed prenatally with CAH, so we have been fortunate enough to have her properly cared for from the outset. In her first six weeks of life, she was on two 5 mg tablets of hydrocortisone a day (split in three doses). After careful monitoring of her bloodwork in this time, her endo eventually dropped her dosage down to 3/4 of a 5 mg tab a day (obviously split over three doses).
Two weeks ago, she had her blood drawn and her sodium came back frighteningly low (128) but her potassium was normal. She has been teething, and it's been very tough to feed her, so I think that she was not getting the right balance of fluid and sodium a day, so it dropped. The endo alerted us at 11 p.m. on a Friday night, and we upped her florinef and increased her sodium, as well as supplementing her with pedialyte when she wasn't drinking enough. This got all her electrolytes in good range within about three days.
However, he just called me with the results of her renin test (elevated, he expected this because of her low sodium and believes that he has mitigated that problem by upping her dose of florinef) and her 17OHP was, as he put it, "comparable to a person who is not taking any hydrocortisone at all." Even though she hadn't been drinking well, she'd still been taking her meds fine, so we were both quite surprised by this.
His response is to put her on three full pills a day for five days to suppress her quickly, the he is going to make her long-term dose for the next month twice what is was prior to today's results (that is, 1 and one half pill per day over three doses).
My question is: is it normal for a dose that was working for some time to just stop having an effect? Is a dramatic change like that something that can just happen, or is it the bodies response to some kind of stress (she did have surgery in mid-July and was well managed throughout and did wonderfully)? Would it have become clear to us over time that there was something going wrong with her body or is this only the sort of thing that is made clear with regular blood work?
I think that my biggest concern is the fact that we didn't see any outward signs of her health taking a turn for the worse with her sodium drop, and we definitely didn't notice anything going on with her in terms of a potential over-production of 17OHP or aldesterone.
Thanks for your insights!
