So today was the first day of Bex’s ACTH injections without any assistance from a trained medical professional…yup, on our own! To say it was a bit stressful would be an understatement. Actually, giving the shot wasn’t that bad. It was trying to measure out the exact dosage that was the complicated part! Our doctor wrote down the dosage in units of the medication and the syringes are in mLs. So we are supposed to be giving Bex 60 units of the ACTH, but we didn’t know how that translated to mls. We spent about an hour with the hospital trying to make sure we knew the exact amount to give her.
The funny part is after they explained how to measure the correct amount of medicine I nearly laughed out loud. On the box it provides the ratio of the units to mls (400 units = 5 mls or 80/1). Welp, there is your answer! If we are supposed to give her 60 units then it’s just 60/80 to get .75 mls. It was my own “come on man” moment. Not to toot my own horn, but I am a pretty smart guy. However, when the situation is giving your 7 month old daughter a steroid injection you tend to worry a bit more and error on the side of caution.
After giving Bex the shots Lindsey and I went to work on researching more about IS/West Syndrome. It’s time to be proactive vs. reactive and we have already submitted several requests to get in touch with resources and support networks to get more help on how to work with Bex (and manage our lives) with this challenge. More to come as we continue to update the “About West Syndrome” page…