Amiee,

Good advice. I will definetly email her the questions for our next visit in February

I usally have a zillion t hings I want to say & even make a list but for some reason it doesn’t all come together!

His visit went great! They did an X-ray of his bone growth and it is right at about 9 yrs old. Which he will be in a couple of wks. Blood pressure good, height & weight was right on the chart where it needed to be.  His endo was very pleased and told us what a great job we were doing. We have a strict schedule for his doses and it has worked. 24/7  around the clock process but worth every minute for him.

There was another endo that came to talk with us that wants to do a study.

He wants to give him (he is 8 yrs old SWCAH) three different steriods dex, predisone and hydro. Each 1 will be given for a six wk period monitored closely and then a 24 hr stay with blood draws & testing.  They tell me this has not been done before! They want to see what works the best. He could be getting 1 pill a day vs. 3 doses a day. 

He has had a rough time from birth to 3yrs before I got him due to his mother never giving him his meds & going to the endo visits. It took me almost 2 to 3 yrs to get his levels under control and him feeling normal. It was a very long tiring time.

I’m not really sure what I’m going to do. If I can help with the meds to  make a difference to help the CAH kids I will do anything.  Just don’t know if it is best for him. He is very bright & was listening the whole time and he was all for it!!!!!! He is an amazing boy!!!!!!!!!!!!

They already have about 8 kids doing this now and have had no complications. It is at Riley Hospital where they are having the Cares Conference in October.

Anyone an opinion on this??? WOuld  you do this if it was presented to you & your chid???

Jenny