Hi There!

Congratulations on your baby girl! Good for you for researching all you can. AS for dosing schedule. If you are trying to follow the circadium rhythm dosing you would need four doses per day. The largest at 3am and 7am, with them consecutively smaller at noon, 5:30 and smallest at 10PM. We follow this with my daughter and she is doing very well. I don’t think all those with CAH NEED to follow it but my daughter was having side effects from the Cortef. She stopped growing, wouldn’t sleep and had a huge round moon face. And yes she was cranky with dark circles probably due to lack of sleep. Poor thing was on the same dose as a newborn weighing 6pounds (oversuppressed) as she has worked back up to now at 6 1/ years old and 54 pounds. We found a different endo for her and she has been amazing. Anyway, the doses are something like 3am 33%, 7am 25%, noon 18%, 5:30pm 13% and 10pm 11%.) I know these are wrong but they are close approximations of the daily total. I am looking for an article stating the exact percentages but I can’t find it.

WE have only give my daughter the shot about 5 times. She responds very quickly when we do give it. Generally for her we have mostly given it for high fever that lasts a while. WE found that if we didn’t give it and tried with triple dosing, she would eventually throw up a scary white foamy substance and then we would give it to her. Always after we would wonder why we didn’t give it sooner. Now we do just give it sooner. It keeps her out of the hospital. We call her doctors and let them know what is going on.

Under/over suppression can both cause crankiness.

Over: moon face, unable to sleep (but not many infants do that for too long!), weight gain or no growth in height/weight.

Under: rapid height growth, dark spotty pigment spots, hair growth, bone age advancement, further virilization

My daughter is definitely an active outdoors kid of girl. (But so am I). She enjoys building with legos and zoob, climbing trees, riding bikes, skiing, soccer, swimming, playing make believe games, is a wiz at math and reading is SUPER social, loves and lives life to the fullest. Definitely not a girly-girl. She will play with dolls if others show an interest. She does like to get dolled up and put on glitter, begged us to get her ears pierced (paid for it out of her own money), likes to paint her nails, enjoys dresses in the summer but not winter (she is practical like her mother!). She is well rounded and fun. Who knows if she would be this way with or without CAH. Her father and I encourage outdoorsy things because we love th rock climb, mtn bike, ski, hike etc. Too soon to tell about her orientation but it doesn’t matter to me.

I have heard that Cortef is metabolized between 4-6 hours depending on the individual. This means at most it lasts 6 hours in the body.

Good lluck with all this. I know it’s a bit overwhelming but it does get much easier. My advice is to be prepared. Always carry an emergency kit: shot of solucortef, cortef pills, thermometer, advil, tylenol. Then relax. Oh, and goodness, we have never kept our daughter away from other people. When properly controlled they shouldn’t get sick more than anyone else. My daughter has never been in the ER and gets sick a few times per year, once preety sick like with a lingering cough or something.

Take care, Julia