Pituitary Dwarfism

Say What? It was just recently that I learned of the medical definition used for Growth Hormone Deficiency being referred to as Pituitary Dwarfism. I must say, we had never heard Eva's diagnosis referred to as this and seeing this on her documentation made me feel a bit uneasy. Therefore, this will be the last you hear me refer to her deficiency in this manner. This did however, open my eyes to the fact that her diagnosis is not just effecting her stature. In fact, what many of you may not know is the complications could arise with her organs as well. GHD impacts all aspects of growth; including heart and lung function as well as reproductive organs and learning delays. I would like to stress, COULD arise, as many children will go through life with no other issues, and there are many that will. We are in a state of uncertainty and will be for some time to come. Currently, Eva's physical (bone) age is 4.5-5 years old. It is so weird to think about her chronological age being 7.5 years old and yet her body is that of a  4.5-5year old.  Below is a picture from our training session as Children's Hospital.

GH Therapy began in the beginning of January 2015. Steve, Eva and myself were trained by a endocrinologist nurse at Children's Hospital as we are responsible for mixing the solutions and giving the DAILY injections. We get quite a few questions about her injections so I hope to answer some of them here. We knew going into this, that the injections would be a daily routine for Eva that would last until after puberty at the soonest (again, it will all depend on other organ functions) We opted to approach the injections by having Eva play a large role in the training and taking on some of the responsibilities. This has become part of her everyday life and we felt that honesty was the best approach. Injections are to be given at consistent time between the hours of 6:00pm-8:00pm. The old saying stands true "you grow when you sleep" as GH is released during long hours of rest, giving her injections shortly before bed will be most beneficial when they work hand in hand with the little GH her body does release. She has been a trooper! She tends to have some burning some of the time, but overall she has taken them with no issues. When we first began, she had to look away and hold her breath when we gave the injections. Fast forward a month and she is now able to watch the entire process and when she is ready, the next step will be pushing the button ;)

We have experienced just one hiccup so far. Headaches can cause concern with children on GH therapy as the medication can cause fluid buildup around the brain. After two weeks, she started complaining of headaches and by three weeks they were coming more frequently as well as progressively getting worse. With this happening, we had to stop the injections for 2 days and then begin again with a lower dosage. We are in the middle of progressing back to the prescribed dosage, and hopefully in another two weeks we will be right where we left off.
You may be wondering if we have seen growth yet? We are happy to share with you that... YES! She has grown 1/2 inch in just over a month. To some, this may not be much, however for Eva, before GH therapy she was growing 1/2 per year.