Being caregivers to kids with PWS means wearing many hats

We have a nonnegotiable evening routine in our house: get the kids to sleep, spend some time resetting for the next day, then give growth hormone injections before going to bed ourselves. Ninety-nine percent of the time, both of our kiddos — Emerson, 4, and Ellis, 1 — sleep through their injections. Kudos to my husband, Jamie, who is usually leading this nightly task.

Thinking back, I remember how nervous we were the first time we gave Emerson that first injection. Neither of us has a healthcare background. It felt enormous. Now it’s just part of the routine, no different than brushing our teeth.

By the time Ellis came to us at 6 months old, we had over three years of giving the injection to Emerson under our belt. Ellis’ first injection was a breeze, and incorporating him into the routine became automatic almost immediately.

Recommended Reading

July 13, 2026 by Trevor Dykes

Why we said yes to adopting 2 children with Prader-Willi syndrome

A different kind of shot

A couple of months ago, we were informed that Ellis needed to start on twice-weekly human chorionic gonadotropin (HCG) injections in preparation for an upcoming procedure. Typically a four-to-six-week course of treatment, it requires weekly lab work and involves intramuscular administration with a larger needle than growth hormone, much like a flu shot. This was all new to us.

We had three options: bring Ellis into the clinic so the care team could administer the injections and do the lab draws, explore coverage for a home care nurse, or learn to give the shots ourselves. Given our work schedules and the time we already spend going to various appointments throughout the week, a home care nurse looked like the easiest and most convenient path. Ellis’ care team agreed, and this was the direction we went, until it took a different turn.

Prior authorizations dragged on longer than expected, tangled up in how the medication was classified. Once we finally got that cleared, we ran into a coverage complication we hadn’t anticipated: The medication had to come from a specific pharmacy network, one our home care option wasn’t set up to work with. Storing it at the clinic or bringing it in ourselves for the care team to administer were no longer options.

Our new options became: explore coverage for one of the home care company’s approved pharmacies or learn to give the shots ourselves. We ultimately decided that we didn’t want to risk further delay of the treatment or the procedure.

Learning it ourselves

We scheduled a training appointment to learn how to give the injection ourselves. That nervous feeling came rushing back. While we’d spent the last few years giving growth hormone injections, this one was more invasive. There was an internal struggle of not wanting to cause our kiddo pain but also needing to ensure that he received the treatment. So we compartmentalized.

The nurse guiding the training had our supplies ready and waiting when we were called back to the room. She walked us through how to do it, then we each did a trial run on a practice skin pad. It was very similar to giving the growth hormone. Then she asked who would be the one to give Ellis his first dose.

I stepped forward and began the process by wiping down the vial, drawing the medication into the syringe, and capping it until I was ready. We put Ellis on his stomach so his hands wouldn’t get in the way. Jamie tried to distract him with a chewy toy and funny voices. I wiped his thigh down with the alcohol swab and gave the injection.

It was quick, and Ellis started to cry. I had mixed feelings — guilt for making him cry, but relief that it wasn’t as bad as I thought it would be.

Now, here we are, wrapping up week six. For the most part, we’ve all gotten pretty used to it. Ellis has even gotten better with the weekly lab draws, though they’re the least fun of all, given the challenge of finding one of his tiny veins.

He’s been responding really well to the treatment.

Just another hat

I’ve learned that, while there will be plenty of things that make me nervous, it’s important to remain adaptable. We figured it out because Ellis needed us to, the same way we learned to administer growth hormone three years ago, and the same way we’ll figure out whatever shows up next.

Throughout the course of this treatment, we’ve had to be empathetic dads, persistent advocates, and shot-administering nurses. As caregivers to two kids living with Prader-Willi syndrome (PWS), we wear so many hats.

Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.