While treatment has helped my son, the itch never entirely fades
A columnist describes the extent of his son's cholestatic pruritus
If you spend enough time around something, you’ll start to notice it less and less. But that’s not always the case with our 4-year-old son, Finley, who has Alagille syndrome, which causes constant itching — a condition called cholestatic pruritus.
We give Finley his medicine both in the morning and the evening, and we redirect his itching to the best of our abilities. It’s important to stay diligent to help him any way we can.
Finley is an active little man. He may be small, but he makes his presence known. During a recent family trip to a local aquarium to celebrate the birthday of his older brother, Jackson, Finley’s energy was on full display. Unfortunately, so was his scratching.
In general, Finley’s cholestatic pruritus is kept in check with his medication. Our gastroenterology team has worked on finding the right dose for him, and his medication has produced positive results. That said, it’s not 100% effective. Finley still itches and scratches throughout the day. It’s usually pretty minimal, and if you don’t know what to look for, you’d probably miss it.
Finley had an amazing time during our recent trip, but it was hard to miss his scratching. He’d be pointing out a giant ray moving across the tank while twisting his shirt back and forth, a scratching effort that he used for most of the day. To an outside observer, it probably looks like a 4-year-old fidgeting. But not to me.
Finley Sandstrom, 4, loves going to the local aquarium (photo by Jay Sandstrom)
A little later, while watching a harbor seal, Finley told us all about seals while simultaneously reaching under his pant legs to get to his shins and ankles. Later on, he’d reach for his elbows.
He wasn’t focused on his itch, though. Instead, he was having the time of his life while exploring the exhibits, asking questions about the animals, and marveling at the varied ocean life. But as his parent observing him, I could see how cholestatic pruritus was affecting him.
I think it’s one of the hardest things for me to accept about Finley’s diagnosis — probably because I know what having an itch feels like. The thought of that feeling failing to dissipate is challenging for me to cope with. I want nothing more than for my child to be happy, healthy, and comfortable.
Ultimately, choosing proper clothing for him and staying on top of his medication are the two things that have helped the most to alleviate some of this annoying symptom. I’m told the itching may be at its worst between the ages of 3 and 5. For now, my job is to continue helping Finley navigate his symptoms so that he can have the best experience possible, every day.
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.
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