Madison and I just completed Hizentra treatment #17. I include myself as completing the treatment because I am the one administering it - I feel that counts for something. There have been several weeks where it took everything I had to maintain the required perky, happy, "this is no-big deal" attitude. The calm-cool-collected act is not always easy to maintain while drawing up a syringe full of thick, sticky medicine with a 9 year old screaming that she doesn't want to do it and, in fact, she WONT do it, and then attempting to stick her in the leg with the thick, sticky medicine while she is swatting at your hands and hoping you get the stick in the right place.
It's about control - I totally get that. She can't control when she gets sick so she just wants a little say-so on these treatments. These treatments are still a little unsettling to her. She takes the weekly infusions and still gets sick, how is she suppose to understand that? I see the improvements. Her lab work shows that her IGg levels are more than doubled, they are in the middle of the normal range and when she does get sick it resolves quicker and with less RX intervention. But showing a 9yr old a piece of paper with her IGg levels isn't going to make her understand the benefits of the medication.
The solution for now is to take the infusions back to the doctor's office. This will let "Mom" go back to being "Mom", let the house go back to being a "home" and let he FED EX truck go back to being a truck that delivers fun stuff - not medicine. We will have an "appointment" at the doctor's (we had "appointments" when we did them at the house but Madison wanted control so there was always drama with the home appointments). She will miss a little more school, I will miss a little more work, we will pay a little bit more, but my hope is that she will feel more comfortable in her own house, around her own family and not have to worry if she is going to get stuck today. Madison, you will not get stuck today!
