Taking steps to manage my son’s itch as the heat rises

Living in the Pacific Northwest, I look forward to the changing of the seasons. While I certainly enjoy aspects of the fall and winter, I do not love the long, dark, and dreary days. As the days lengthen and the weather warms up, my days literally brighten. The neighborhood comes alive with kids playing and adults working in their yards.

But with this warm weather comes a side effect I never had to think about until I had a child with Alagille syndrome. As the heat rises, my son Finley’s itch (known as cholestatic pruritus) becomes more pronounced.

In my area, it has been unseasonably warm the past few days. This has been great for playing outside and enjoying the sun, but tricky when it comes to Finley’s bedtime.

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When my family moved into our current house about five years ago, we quickly realized that adding central air would be a necessary upgrade. Even though Finley was less than a year old, my wife, Dani, and I knew that heat could make the itching worse, and our upstairs sure did get warm in the summer. We made do with a portable AC unit and fans that first summer while planning a permanent fix.

By the following summer, we had central AC. It was a great change and definitely helped Finley sleep. We also keep a fan next to his bed year-round, as he likes the sensation. Now he is old enough to turn it on himself when he needs it. That is one of the benefits of his getting older. He is much better at communicating, and Dani and I don’t have to do as much guessing about how he’s feeling.

Finley loves cooling off on the splash pad. (Photo by Jay Sandstrom)

When this recent heat wave hit, Finley was quick to tell Dani and me that he needed a different blanket on his bed. He knew this before we even asked him. This makes me both happy and sad. On one hand, he is learning to identify his needs. On the other hand, cholestatic pruritus affects his comfort. While I enjoy sleeping with a fan on, I cannot imagine hoping that the breeze eases the persistent itch under my skin.

This year, I’m taking solace in the fact that Finley is helping steer the ship in terms of managing his itch. After five years, our family is well-practiced at managing this side effect. Finley’s medication helps a lot, and I feel so fortunate that it exists and was approved just before he became eligible to start taking it. Having met others with Alagille syndrome and their families, I’m thankful that Finley has access to newer treatment options. I hope those options continue to expand and evolve.

For now, while the temperature is higher, the AC stays on, the fan stays by his bed, he uses a light sheet as a blanket, and he sleeps wearing a long-sleeve T-shirt instead of pajamas. Thankfully, all of these steps, along with his medication, are providing him enough relief.

I always say that any itch is too much itch, and our goal is certainly no itch at all. But if Finley is sleeping through the night and happy during the day, that is a win I will take.

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