As the weather changes here on the East Coast, I’ve learned that the current weather and season can affect the symptoms—specifically, pruritus—experienced by my son and my husband, who have Alagille syndrome (ALGS). I’ve learned over the past 5 years in dealing with ALGS when I will typically see an onset of increased itch and when I should be prepared to help manage that itch.
Generally, I know when spring and fall first arrive my kids and my husband, are way itchier than normal for a few weeks. It seems like it takes a few days or weeks for their bodies to adjust and start to manage the increased symptoms. I first started noticing this pattern when my son would get itchy every year around October. My husband started tracking his itch and noticed the same sort of pattern.
October is when the weather would start to become cooler and drier. I would notice his skin would become more dry than usual and he would develop tiny little bumps all over. They are flesh-colored so they aren’t very noticeable, but if you look closely, you can see them. It gets very frustrating when the weather is cooler, and we have the itching under control and then suddenly warmer weather is back for a few days and bottoms out again. It starts the awful cycle of increased itch all over.
During the summer months, I know too much time in the heat or temperatures that are too hot will exacerbate the itch. Something about the heat just seems to intensify the itch. The one positive about summer is that there is a lot of humidity in the air, so it doesn’t seem to cause the skin to become as dry, and the itch in my experience for my family isn’t as bad in the summer as it is in the fall. I try to limit the amount of time that we spend outside in hotter temperatures.
I try to manage the itch on top of keeping up with prescribed medications. During the winter months, I take stock in coconut oil. I like to lather the kids up at night before bed and then slip them into their pajamas. We use light cotton pajamas, of course, to try to keep them light and airy. We limit baths and even though it’s winter, we keep the room cool. If it becomes too hot at night from the heat, I will crack the windows so that coolness can be felt and try to help them not be as itchy.
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We also have a whole-house humidifier to keep humidity pumped into our house so that we can avoid excessive dryness. In the summer, we try to manage baths so that we don’t overdo it, but keep the kids clean and wash off anything that could add to the itch such as salt or pool water, sunscreens, etc. Sometimes this means letting them splash around in the bath without adding soap. We also usually let them sleep without pajamas and like to use coconut lotion in the summer. We keep the room cool and have a fan blowing a gentle breeze on them. We also make sure to stay on top of hydration so that we can avoid doing anything at all to add to their levels of itch.
While the weather temperatures and humidity can play a huge part in the itch associated with ALGS, I think we can try to manage it as best as possible and be prepared when we know it is coming. Preparing myself to be ready to deal with an increased itch and sleepless nights can only help.