Preparing my son for warmer weather, which exacerbates his itch
As temperatures rise, I take extra steps to ensure Finley is comfortable
Here in the Pacific Northwest, we are inching into spring. This season brings days that tease us about what the weather could be.
A recent weekend was a perfect example. It was 70 F with sparse clouds in the sky, and the sun was shining all day. My two boys — Jackson, 7, and Finley, 4 — spent almost the whole day outside. We had an awesome time soaking up the sunshine and pretending it was summertime. However, the warmer weather aggravates a symptom of Finley’s Alagille syndrome: the dreaded itch.
Finley loves picking flowers at the park. (Photo by Jay Sandstrom)
Finley was diagnosed with Alagille syndrome about four months after his birth in 2021. Since that time, the majority of his medical care has been focused on his growth and nutritional support. But for me, as his parent, one of the most important things is treating the cholestatic pruritus caused by his liver disease.
As I have written previously, the itch is one of the hardest symptoms for me to witness, as I can relate to feeling itchy. While I know what it’s like to have an itch you can’t scratch, I also know that what I’ve experienced is not the same as what Finley experiences.
I see him scratch his arms and ankles, shuffle his shirt around, and shift back and forth on the couch. Thankfully, medication keeps his itch in check, but it never goes away completely. The medicine wears off as the day goes on. And in warmer weather, his itchiness tends to increase.
So, even though it wasn’t super hot outside, I could see Finley’s itching habits become more pronounced when he was running around at the playground recently. He was very active, so his body was warmed up. It was a good reminder to start preparing for the change in seasons. Even if the long-standing joke that our Pacific Northwest summers don’t start until after July 4 is true, it’s better to be ready.
How we handle warmer weather
We prepare Finley for warmer weather in several ways. They may seem obvious, but if they help him, they’re worth it.
Finley is an adventurous child. (Photo by Jay Sandstrom)
Wardrobe: We make sure that Finley has plenty of shorts and T-shirts made with light, flowy, and breathable materials. Finley has also progressed to wearing underwear instead of pullups, so I’m curious to see how that affects his comfort this summer.
Sleeping conditions: A cooling pillow has been wonderful for Finley; he uses it year-round. We’ll soon swap out his bedding with something lighter. A fan lives by his bedside, and it has a super-low setting that provides a light, cool breeze that’s comfortable for sleep. Again, light and breathable pajamas are a must.
Central air: When we moved into our house, there was no air conditioning. We moved in during a record heat wave for our area and quickly realized that we would need to add AC for everyone in our home, but especially for Finley. The problem was that we weren’t the only family who had this realization, so it was a long wait — and expensive — to get it installed. But it was worth every penny. Now we can all rest a little easier, and I don’t have to worry as much about Finley itching at night.
As a parent, my job is to make sure my kids are safe, comfortable, and loved. For Finley, this requires a few extra steps due to his Alagille syndrome. But I will continue to do everything I can to ensure that my boys have the best experiences possible growing up — including having fun in the sun.
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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