Re: baby boys with salt losing CAH
5/10/99 1:01 PM
Hi, Donna! My "baby boy" is now 14yrs old. The handling of CAH has changed a bit since he was a baby, but I'll let you know how things were for us... 1.some do, some don't...mine was very healthy even for a baby without CAH. I was told that being on steroids would lower his immunity, & he recieved flu shots once he started school, but we discontinued them after about 3rd grade. Once my son was diagnosed, he was only to the ER once for vomitting, they gave him the shot in his bottom, he stopped vomitting imediately, they kept him over night for observation, by morning he was his old self again. 2.my son received all his immunizations on schedual. If he ran a fever afterwards, then I doubled his dose of cortisone acetate until the fever was gone, then weaned him back down to his regular dose. 3.I don't think the liquid form was available when my son was a baby, or else his Endo's didn't know about it. He did fine on the pills, but it took some experimenting to find the best way to give them to him. I disolved them in a few drops of water, then drew that up into a dropper & gave them that way. I also found out from the nurses who administer the oral polio that if you lay him on his back & squeeze his cheeks, he can't spit it back out & he doesn't choke on it either! 4.my son has never had the 24hr 17OHP done. He has 17OHP done with a single blood draw, although the 24hr sounds more accurate. The only 24hr test he has had done is a 24hr urine free cortisol--but they didn't do this til after he was potty-trained. Whenever your son goes for blood draws, make sure they are the same time of the day (preferably first thing in the morning) and the same way (ei: fasting & no meds, or fasting & 1hr after meds, etc.)I think fasting & no meds & first thing in the morning is the prefered way now-a-days. I hope this helps, keep reading "the board", you'll find alot of help here! I do, even now that my son is 14yrs old!! Good Luck, it DOES get easier to deal with. ~Deb L
Deb
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