Hi everyone,

I don’t know if you all remember my grandson was going to participate in a study for all 3 meds. Dex, predisone & cortef. We were going to try each one for 6 wks., an overnight stay to do the necessary labs. Supposedly first study of its kind. They were going to see which one worked the best. Possibly 1 a day vs. the 3 a day.  I thought long & hard about this but if I could help our children we would do it.

Well we started on cortef which he has been on for 9 yrs. (they gave him higher doses & diff. times to take the meds). Everything went well. We went into the hospital for the overnight stay. We were to be there at 7:00 am & have the IV in by eight & draw blood by 8:00. Well they couldn’t get the IV in. After about the 4th nurse & numerous pokes in each arm with him hysterical I said that is it!!!!!!!!!!!! We are done. They only had 5 minutes left & was determined. I felt so bad for my grandson for even thinking of putting him thru this.

The endo told me that 5 kids are almost done with the study. I’m so happy that they have gotten some results.

I guess it wasn’t meant for him to go thru with this after all.  

Just wanted to let you know that we will not be participating in any studys are a very long time!!!!!!!!

Jenny