The drug company has a patient care division called NordiCare that works with us, the doctor, and the insurance company to streamline the process. I am really thankful for it and we have a really good case manager who has answered a lot of questions for me! NordiCare sends out a nurse to your house to teach you how to use the pen and administer the medication, which was what happened this morning. She walked through the process, then had me practice on a doll, then made me do it for real! (Ugh, I was thinking I'd get to do it for real the first time with just Dan and I!) I felt awful, I brought Evelyn over and kept saying, "I'm so sorry, honey" - then hesitated for like 20 seconds before I could actually put the needle into her. Having to stick my sweet girl with a needle was one of the worst feelings I've ever had as a mother!
This is what her pen looks like - we attach a new needle each night, dial up her dose, and give it to her.
We rotate to different places around her body (back of the arm, thigh, stomach - ouch!, and bottom on both sides) so that she won't build up scar tissue from the needles. Evelyn will have this injection every day until she goes through puberty (or God heals her!). We're doing a few things to try and make this as easy as possible on her. It's best to give the injection in the evening because your body naturally produces growth hormone at night while you sleep. So I have an alarm set on my phone to remind us every night at 7pm to do her injection. We call it her "poke" because we don't want her to associate it with a shot and hate going to the doctor, nor do we want her to associate it with medicine in case she has to take an oral medication at some point. We set up a calendar that she gets to put a sticker on each night, and she gets 2 M&Ms after her poke. The chocolate started because after the nurse made me give Evelyn the first dose while she was there, I wanted to buy Evelyn a stable full of ponies but opted for chocolate instead!
A lot of you have asked about side effects, particularly because you have heard news stories of some pretty serious side effects with growth hormone. The news stories are for people using GH for performance enhancement - so they are injecting GH in excess of the normal levels their body is naturally producing. When you have too much GH, that's when the negative side effects occur. In Evelyn's case, we are simply replacing what her body is not making, so she will not suffer any side effects (other than being hungry and tired from growing!). In order to ensure this, she will meet with her doctor for follow-up appointments every three months to track her growth velocity and be certain her dosage is appropriate. I found a Facebook group managed by a foundation that supports research for GH disorders that has been really helpful. It's all parents of kids with various growth diagnoses, mostly GH deficient diagnoses. They have given me some good ideas like letting Evelyn pick the injection site and swab her skin with the alcohol pad before we do the poke. Things like that let her feel like she's more a part of it, instead of it being done to her. It's all pretty new and a little scary. I don't really want it to become commonplace or normal to her because it's not! I just want God to heal her!!!