Posterior and Anterior

Last week, Anya had her appointment with the endocrine department at Childrens' Colorado. She saw a P.A. that we met last summer at the Courage Classic. That didn't do a whole lot to smooth the way in Anya's opinion. She seems to just be done with appointments. I know, none of us can blame her, but it can make these appointments more than a bit trying.

We found out a lot of information, much of it completely new to us. I will explain here and I apologize in advance if this is review to you - you just have more knowledge of the pituitary than I have. To begin with, the pituitary gland has two parts:  the posterior and the anterior. Each part has different functions. The bright spot that was showing in Anya's MRI was labeled an ectopic posterior pituitary bright spot. Ectopic means simply that it is not where it is supposed to be. Anya's posterior pituitary happens to sit a little higher than what is considered normal. We were told that pituitary glands often are ectopic and at times there are adverse effects, but often not. In Anya's case, it looks like having an ectopic posterior pituitary is doing nothing to her body and its functions. As for the "bright spot," I guess we all have bright spots on our pituitary. Hers was noted on the MRI because it was ectopic.

That isn't the end of the story, however. Anya's growth has also been a concern in the past and it remains a concern. Her growth charts were the second half of the puzzle that led her to be referred to endocrinology. She is starting to not follow the curve any longer. Prior to the appointment, the P.A. had diligently sorted through Anya's records. She saw that on an MRI years ago there was a note that Anya's anterior pituitary is smaller in size than what is normal. The anterior pituitary is what controls growth hormone, as well as thyroid and puberty hormone. Blood tests done over a year ago showed that Anya is low in growth hormone. We are waiting for the results to come back on more blood tests, but for now everyone is expecting the same outcome, that she is low in growth hormone. That is often related to having a small posterior pituitary.

What all that means is that there is enough medical evidence to support putting Anya on growth hormone meds now. That is a daily subcutaneous shot. If you think that sounds like no big deal, I will tell you that at this point with Anya's tolerance (or lack of thereof) of anything medical, it would be a big huge stinkin' deal. That is one reason why we aren't jumping into starting the shots. Another is that with risks of secondary cancers, we are worried about making things grow that shouldn't be growing in her body. The last reason is that while her small size could be a result of low growth hormone, it could also be that she is a late bloomer. By the P.A.'s definition, both Will and I were late bloomers as well.

While there is medical evidence to support starting her on the meds, it isn't strong enough to make it a necessity, so the decision is truly up to us, her parents. At this point we have decided to wait a year and see what her growth does. As I said, there are still tests that we are waiting on, so things could change based on the results. We are also going to have conversations with her other providers and likely get a second opinion. What makes this decision weighty is that we are not merely talking about being short, there is a possibility that Anya could top out at a height where she would not be able to function normally in society (ie driving, reaching cupboards, etc.). On top of that, she is only able to take the medication while she is growing. There is a limited amount of time that treatment would be effective.

At the end of the day, and every day, we want to do what is best for Anya, we wish it were a black and white decision, but right now there is a whole lot of grey.