With Alagille syndrome, summer fun comes with a summer caution

My sons Jackson and Finley love the summer, when their schedules ease up. They spend their days adventuring in the neighborhood and splashing around in the water on the deck.

I love summer, too, but I think my favorite part of the season is that it means catching a break from the busy schedule of doctor appointments for Finley, my youngest son, who was born with Alagille syndrome. We are already fortunate at this point in Finley’s life that the number of doctor visits are fewer than last year, which was less than the year before that. Finley’s condition has continued to be stable, but with chronic liver disease, there might always be something that sneaks up on you. Even in the summertime.

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A summer caution

Finley, left, and his brother Jackson enjoy a snack of strawberries on a summer day. (Photo by Jay Sandstrom)

Finley and his brother could spend all day playing in the water, whether it’s splashing in the mini-pool, running through the sprinkler, or playing with the hose. They have the best time together.

But being exposed to water with Alagille syndrome can exacerbate cholestatic pruritus because it could dry out his skin. This was one of the first things that my wife, Dani, and I learned about following Finley’s diagnosis, and it remains something we’ve always tried to stay on top of. Knowing that exposure to water could make his itch worse used to make us overly cautious.

But over time, that caution lowered. Most kids love water, and Finley is no exception, and we’ve discovered that his playing in the water doesn’t alter his itch symptoms too much as long as we treat him with medication and lotion. This makes us happy because we don’t want to deprive him of things based on his Alagille diagnosis.

Now, when it comes to summer, Finley gets to play in the water as much as he’s able to. I want him to have the most opportunities that he can have to just be a kid because, when it comes right down to it, once summer arrives, he’s just like every other kid in the neighborhood.

Note: Liver Disease 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 Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.