The wait is finally over. We received the results of Paige's bone density test. No osteopenia. Yeah!! Woo Hoo!!
Yesterday we met with the endocrinologist to discuss her delayed bone age . She wants to take a wait and see approach. She is not a big believer in growth hormones unless the child completely stops growing. Even though Paige is delayed by 1 or 2 years and has fallen off of her growth curve, she is still growing. We are a tall family (women are all 5' 8" and taller, men are all over 6' 3"). The endocrinologist was sure Paige would not reach her potential but, like I said, at least she is still growing.
One very interesting topic that the endo and I discussed was Paige's NICU diagnosis of congenital adrenal hyperplasia (CAH).
A little background.... at one point during her NICU stay Paige's body stopped making urine. We were well out of the "honeymoon phase" (a term I truly dislike) when it happened. They performed a blood test called ACTH. When the results came back one of the neos sat us down and explained that Paige had CAH. We were devastated. Actually, that's an understatement. It was the nail in the coffin for me. I shut down. I couldn't believe this was happening to her.
They started her on steroids. It didn't work. She still wasn't making urine. They started her on another steroid which finally worked.
One day we were standing by her incubator and the neo approached us. (I'm pretty sure I looked like a walking zombie) He started trying to tell us what we would have to watch for as she got older and stressed to us that she would need steroids at the first sign of illness. He was with us for awhile and I'm pretty sure he talked about other things but I wasn't listening. I couldn't help but focus on the head neo watching from a distance. He was shaking his head.
As soon as I had a chance (without offending the visiting neo-oh how polite I was back then) I went and talked with the head neo. He told us that he was 100% positive that Paige's urine (or lack of) issue was a direct result of her prematurity. He went on to tell us that he did not think she had CAH. He said that he has seen it in many cases.
Sure enough, the ACTH was repeated and it came back within normal limits. Paige was weened from the steroids (in 2 days I might add-ugh) and she has been fine ever since.
A happy ending? You bet. But, because of lack of knowledge on the part of the newer neo and the fact that the head neo allowed him to "run with his suspicion" (despite knowing better), Paige had to have a few transfusions (ACTH requires a lot of blood). She also had to have the test repeated after her discharge. For the first year of her life we had to weigh diapers and mark down every bit of fluid that entered into her mouth. If she spit up, we had to try to catch it and measure how much came out. As if being a preemie parent wasn't stressful enough, we had to watch our child every bit of the day to check to see if she was going into adrenal crisis. You can't even begin to guess how many times we had to go to the doctor because her urine output was low. (which is normal)
So, as I am talking to the endocrinologist yesterday she is rolling her eyes. She told me Paige's story was not uncommon. She sees this often with inexperienced neos. She did say that the steroids were most likely needed to jump start her system but she was saddened to hear how it was all handled.