Pediatric Endocrinologist

We went to see the pediatric endocrinologist just this past week. He said that, although some would look at her bloodwork results and say that she needed growth hormone, he said that was nonsense - he was convinced it was a lack of protein that was causing her growth disturbance. He said that a lack of growth hormone typically manifests in a child that grows OK in weight, but not OK in height, whereas Elli is doing the reverse, which typically indicates a caloric malnutrition.

He also said that it's possible that the growth disturbance is caused by a syndrome related to aniridia, so he was glad to see that we were going to get genetic testing done. I told him that the insurance company had denied the request. He said that was ridiculous, and that he considered it medically necessary to get the testing done. He said he would include that information in his write-up, which hopefully would help to sway the insurance company.

He also said that he wanted us to have a swallow study done to see if there was anything mechanically wrong with Elli's swallowing mechanisms. (As he said, wouldn't it be a shame to work and work and work to get her to swallow, only to find out that a surgeon could have quickly fixed the problem?)

So, we had the swallow study done last week as well. Thankfully, it was done by a speech therapist that had worked with Ms. Katie for many years. As such, Ms. Katie called the ST the day before the test to give her the background on Elli. It was wonderful to go into the test without having to rehash all the same details for what seems like the hundredth time.

Unfortunately, the swallow study was not terribly helpful. The whole premise is that they mix barium into the food/drink, and that shows up on an x-ray when the child swallows. However, since Elli doesn't swallow any food except breastmilk straight from the source, they never could get a good view of her swallowing. What little they could see, though, seemed to indicate that everything was muscularly OK. So, that leaves us back at square one for right now.