My son’s itchiness was a difficult Alagille symptom to monitor

In hindsight, we shouldn't have downplayed what he was experiencing

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by Jay Sandstrom |

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There are many terms I had never heard prior to having a child with Alagille syndrome. One of them was cholestatic pruritus, otherwise known as “the itch,” though we’ve now become quite familiar with the term.

As a caregiver, this topic hits me hard, as it’s one of the few symptoms of Alagille syndrome I can personally relate to. All of us, regardless of health status, have experienced itching in some form and attempted to remedy it by scratching. But for someone like me, an itch is a temporary discomfort. What I cannot relate to is the constant, nonstop itch that affects many of those with chronic liver diseases.

When my son Finley was diagnosed with Alagille syndrome, our doctors told us to look for signs of pruritus, or itching. They would ask about his itchiness at follow-up appointments. But we faced a problem: How could we tell if our newborn was itchy? Can you ever know just how itchy they feel?

It felt like an impossible thing to gauge. Sure, we could see the signs. Some are easy to recognize, like reaching for the ears, ankles, and stomach. But in Finley’s case, we likely downplayed the severity of the itchiness he was experiencing. This is a reality that has weighed heavily on my mind, as there were steps we could have taken earlier to improve his comfort and quality of life.

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The importance of early intervention

In the months before Finley’s first birthday, he was not sleeping through the night. The medication he was taking at the time to relieve his itch, hydroxyzine, would wear off at the six-hour mark. Like clockwork, Finley would wake up every six hours. This continued every night for about two months.

An 11-month-old boy sits in front of a lit-up Christmas tree. He's wearing a red and green onesie with a reindeer on the front and is smiling at the camera. There are various ornaments on the tree and other Christmas decorations in the background.

Finley Sandstrom at 11 months old, in December 2021. (Photo by Jay Sandstrom)

I would sit giving him his bottle in the glow of the night light, while our sweet little boy would shift his body back and forth. He was using my body to scratch his itch. Nobody was sleeping through the night. It was miserable for almost our entire family. Our older son, Jackson, slept peacefully, unaware why his parents were so sleepy during the day.

At our next gastroenterology appointment, we found that Finley’s hydroxyzine dosage had not been adjusted for his recent weight gain. Once we got that fixed, without exaggeration, he immediately started sleeping through the night again. While this was exciting for us as parents, it also brought feelings of heartbreak.

We hadn’t intervened soon enough. We’d downplayed his symptoms, as they didn’t match the horrors we’d seen of other kids who had scratches all over their body. Babies wake up at night all the time, so surely it was just a sleep regression. That’s what we told ourselves. If we had just asked more questions, we could have avoided some of the challenges our poor son was experiencing.

A learning experience

A young boy smiles broadly while wearing a baseball cap and blue T-shirt. We can tell he's standing outside on a sunny day, though the background is blurred.

Finley Sandstrom enjoys a sunny day in March 2024. (Photo by Jay Sandstrom)

This was a major learning experience for my wife and me. We recognized that we must always ask if his medication dosages need to be changed based on his updated measurements. From now on, we would not be reactive with his treatment. Sure, he may not have been covered in scratches, but he was itching to the point of drawing blood from time to time. He needed help, and we were going to get it for him.

No matter how mild or severe you think your child’s itching may be, ask your doctor what steps can be taken and explore all available options. For Finley, starting Livmarli (maralixibat) at the age of 1 was a game changer.

Keep those lines of communication open with your care team and make sure you’re staying on top of all medication dosages. Monitor symptoms and be honest about what you are seeing. Itching of any kind requires attention and treatment. It’s important to take the necessary steps to improve quality of life for those with Alagille syndrome.

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.