Our stories are very similar.  My son was about 3 1/2 - 4 years old when his meds stopped working.  It was due to the failure of a change in processing regarding Upjohn’s Liquid Cortef.  We were told by three different doctors that he lost so much in growth that he would only reach 4’9".  We were devistated and didn’t know what to do.  I think it’s a little different for a boy to fall in the "Midget Status" than a .  ’s are considered to be cute and petite for the most part.

We are currently enrolled in Dr. New’s Growth Hormone Program and have two years into it.  Things seem to be going well and there doesn’t seem to be any side effects at present.  We give him a shot of GH once a day and Lupron once a month.  We have learned to give it to him in his sleep.  He goes to the doctor for his Lupron shots (thank God).

He is now 8 years old and is projecting 5’5 at current and perhaps with the Lupron (to keep him from going into puberty - hence his bones fuse) he may be able to improve on that projection.  There are no guarantees in any of this CAH stuff.  It is frustrating and anxiety producing but we must all make decisions that seem to be the best for all.  We have talked to our son about this since he is a very bright 7 year old now.  He understands his choices as best as a 7 year old can and has agreed that he wants to continue on with the program.  At this point, he is too little to make these decisions for himself, but if we wait until he is, it will be too late.

I can only hope that, as Aimee has said, when he grows up he feels the same way.

I would be happy to talk with anyone further by email if you would like.