RebeccaMHello,
Recently (last Friday), our 22 month old swcah daughter had her medicine reduced and I am a bit nervous and have some questions. Her last two tests (3 & 4 mo apart) were low. Andros both times was <4 ng/dl and 17OHP was 300 ng/dl and then 122 ng/dl respectively. She had been on 3.75 mg of cortef per day split up equally every 8 hours and we just changed it to 2.5 mg split up twice a day equally. So at the same time I jump for joy at the concept of her only having to take it twice a day, I have my reservations. Probably just for lack of understanding because whenever I think I have a grip on the process, I run into things I am baffled by. Perhaps someone could explain first, why twice a day would even work? Does cortef really stay in your system for twelve hours? I thought medicines later on in life (after growth is reached), like prednisone, were given because they were longer lasting than cortef. Did I miss something there?
Anyway, after that rambling, my main question is. What are the symptoms people have when their medication is reduced? Since our daughter’s was reduced by one third, it seems like a lot to me. I have noticed a few things since the Friday change that I can’t tell if they are lowered dose related in that she is in the process of adjusting, if they are lowered dose related in that she was oversuppressed for awhile and now she is behaving as an expected two year old, or if I need to get her back to the doctor.
The major things I noticed are:
An increase in mood swings? For one example, she likes to jump on the bed. She plopped down on her rear end but her head fell back and hit the window sill (not too bad). She was crying pretty hard as I comforted her then wiggled out of my arms and started jumping again while still crying. Laughing a little in between but crying more.
Shakiness in the morning. She used to get a little snack at 6:00 am with her morning dose and go back to bed. Since she doesn’t get her medicine now until 9:00 am she doesn’t get that snack. She doesn’t eat anything until 9:00 now. I should probably test her sugar levels, and will in the morning, but is it a sign of undersuppression or just part of the adjustment?
She fell asleep while sitting at the table eating her lunch. I took her to bed for a nap and when she awoke she was raring to go but I haven’t ever had her do that before. This is a kid who hardly ever napped and/or slept but now when she is "up" she seems more "up" and when she comes "down" she seems more "down". If that makes any sense. Not as much of a constant.
So what, if any, advice might you have?
Thanks beforehand!
RebeccaM