Many people ask if Brenna can be in the sun. They assume that the sun’s rays will harm her skin (we just try to keep her skin as covered as we can). While this is important of course, the bigger question that most don’t think about is how the outside temperature affects Brenna.
One of the skin’s major jobs is to hold the body’s temperature at a constant 98.6 degrees – not allowing heat to escape when it is cold, or sweating to cool the body off when it is too hot.
Brenna’s body can’t sweat. So it has no way of cooling itself off when it gets too hot, and therefore, high temperatures can be very dangerous for people with Harlequin because their body temperatures just rise right along with the climate temperature.
In the summers, people with ichthyosis have to get creative to stay cool enough. They wear cooling vests, or use spray bottles with fans, suck on ice, and use cold packs on their face and backs and necks. Since we want Brenna’s life to be as “normal” as possible, we want to do everything we can to ensure that she can be outside when she wants to be. (and she is already showing an extreme love for the great outdoors, reaching out and whining every time we get close to the door!)
It’s been a little disappointing for me that she will never have the opportunity to experience the outdoor summer camps that I did, because her skin care needs are just too much. So, I was really excited to read about how FIRST sponsors a summer camp for children with ichthyosis where they are under complete medical care for the entire stay – so they not only get to experience all of the awesomeness of summer camp, but they get to meet other children who look like them and who deal with many of the same health issues…like overheating in the summer!
However, on the flip side of overheating, is that people with Harlequin actually lose heat really easily too. (Which means that the temperatures of the cold pools in the summer are often TOO cold for these kids – UGH! If you have been reading for a while, you’ll remember that we heated up our friends’ pool really high last year for Brenna’s first swim 🙂 )
So while we start to panic once the temps start to climb above 85 in the summer…we also work to keep Brenna bundled up in the winter. Hats are great for keeping Aquaphor on her head and also holding in the heat, and we layer blankets around her when we have to venture outside. On really cool days – the kind that leave your kid with a red and runny nose because of the brisk air – we just can’t stay outside for too long. I remember last year at a cookout we were all donning sweatshirts and had Brenna in a snowsuit just to keep her warm enough!
We have been keeping our house at 76 degrees this summer, and it seems to be working out well. It’s comfortable enough for everyone and warm enough that I can keep Brenna in short sleeves. If it’s too cool in the house and hot outside, I never know what to dress her in!
We also run a space heater in her room in the winter, so that we can lower the temperature of the house and still keep her room nice and cozy. Between the dry winters and the space heater, our humidifier is running about 24/7 in the winters just to keep up!
When Brenna first came home from the hospital, we took her temperature at least a couple of times a day to make sure she wasn’t getting too hold or cold. We still break out the thermometer every now and then if she feels a little hot (because a higher temperature can also be an indicator of infection), but we also know that her skin just naturally feels hot to the touch. It’s like when you get a sunburn and the skin where it is burned feels warm – her skin feels like that all over, all the time.
Temperature is something that I think about constantly. I think ahead to what kind of venue we will be at and whether it will be on the warmer or colder side (people’s homes are warmer and churches tend to be cooler!), and I bring layers of clothes in the diaper bag. I have to say that I am really looking forward to the day when Brenna is a bit older and can tell us herself if she doesn’t feel well because she’s too hot or cold!