Summertime comes with its challenges in trying to manage pruritus in individuals with Alagille syndrome (ALGS). Whether it is hot or cold outside, I find that my son is itchy most of the time and the seasons seem to play a major role in the intensity of his itch. Over the years I’ve learned a few things to try to help manage the itch and make him more comfortable.
While we enjoy summer in my household to the fullest, it can be challenging when dealing with individuals with ALGS. I feel like as soon as the seasons start to change, I expect my 3-year-old son to become extremely itchy, resulting in scabs, scratches, and plenty of sleepless nights. In my house, we live to enjoy summer and let the kids run wild.
I have 4 little kids who enjoy spending their time outside no matter if it’s scorching hot or they’re covered in sweat. However, where we live, it not only gets hot, but very humid, and that means we must limit the amount of time spent outside to better control the intensity of his itching. There is something about the heat that seems to dry his skin out and cause the itch to become worse than normal.
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During summer, I limit baths especially if we’ve spent a lot of time swimming or playing in the water outside. If we swim or do water play his skin becomes drier and therefore at night, he itches more when they find themselves with nothing as they are in bed trying to fall asleep. When he has bath time, I don’t let him play for long. I typically put him in the shower so he can stand and not sit in the water. I quickly clean him and take him out before his skin has any more time to dry up. After baths, I like to lather him up with coconut oil to add some moisture back into his skin.
There are several other things I try as precautions like using sensitive products like sunscreen to avoid fragrances and other unwanted build-ups on his skin so that it doesn’t accentuate the itch.
To try to combat the itch, especially at night, I keep the house cool. We also use a fan in each room to help blow the cool air throughout the room and sometimes the fan must blow directly on him to keep him cool if the AC unit isn’t keeping up with the temperatures. We use very lightweight cotton pajamas for nighttime.
Further, wearing pajamas is a must. I’ve tried letting him sleep without pajamas, but he itches so much that I need to try to contain and protect his skin. It’s a battle trying to cover his body as much as possible, but also not overheating him.
I know when summer comes that the first few weeks take some adjusting and I can expect several sleepless nights. After a while, we eventually get him adjusted and ready for summer as best we can. I make sure to track his itch levels and reach out to our liver team with any concerns of worsening itch so that we can make sure to make any medication adjustments as needed.