Tuesday, March 11, 2008

The Wait Is Over

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.

8 comments:

3 good eggs said...

Yay!!1 NO osteopenia!!! What a sense of relief you all must feel.

Anonymous said...

I hope you can celebrate, or did celebrate . . . I'd love to know what you told Paige and what her understanding is. This is a complex condition . . . Can Paige grasp it?

Chris and Vic

Anonymous said...

Helen Harrison said:

This is really good news! Time for a deep sigh of relief and a glass or three of your favorite vintage.

Did the doc offer you and insight into the 2 year bone growth delay?

Is the general thinking now that Paige never had an adrenal problem? I seem to remember something like this came up in Edward's care...I'll have to look back at the chart.

Helen

23wktwinsmommy said...

Glad to hear the great news!!!

Long Time Listener said...

Ace on the news..hmm on the endo opinion.
These is only a short period of time to optimise growth. What are the endo concerns about GH?

But - and more to the point- again, I am genuinely SO happy that you have some good news. It is so well deserved for you all.

Happy days

Katenali said...

Stacy,
Great news about the osteopenia. Still, it's a concern since it's unlikely that she'll be off the SSRI's anytime soon. Bummer.

Ali just had a bone age as part of her Marfan's screen - it is interesting to read how different specialties view similar results. Endo's view 1 to 2 years discrepancy as a difference, but geneticists view it as "normal" - perhaps it is because of the difference in chrono age between Ali and Paige. Ali's bone age came back as about 11.8 or something like that (she just turned 13) - a little over a year behind. The way the geneticist looked at this is that Ali would continue to grow at least one year past first menarche - so even though she isn't exhibiting all Marfan skeletal signs, she may develop them later than some Marfan kids - though they are less convinced because they were 'looking' for a much bigger gap (as I said they view a more than 1 and less than 2 year gap as "normal").
Perhaps the younger you are the more 'accurate' or indicative the bone age scan is. Maybe once you get to teen age, the ability to age bones by xray becomes less precise.

I'm glad her bones aren't too brittle already .. that would be really scary since she's just around the corner from pre-teen years when they all develop behavioral issues that leave them feeling 10 feet tall and bullet proof. Not good if you have glass bones. One of the girls I cast in one of my shows was like that ... she spends about half of every year in a cast on something - they even checked her for some off-shoot of osteogensis imperfecta - but it came back clear (I doubted it anyway because she was of normal height). But the kid was really glass. During one rehearsal, they were moving props around on the stage and accidently "bumped" into her ribs with a small table - 2 broken ribs ...if I hadn't seen the "impact" myself I would have freaked out all over my cast for being irresponsible but it was literally a 'nothing' bump. I was so stressed for her parents, but they were completely cool.

Sheila

~Denise~ said...

That is wonderful news!

Bake Me A Cake! said...

You are in my thoughts and prayers.