Date: 02/25/2021

Q: I have an 8 year old daughter with bullous epidermolytic hyper keratosis ichthyosis. The problem we are having is that her body is overheating and she can't sleep at night because she is so hot. We have a fan on for her but I don't think it's enough. Please help I have a very unhappy child.

A: 1) My son has the same. Overheating is our biggest issue too. For a while he had a cooling pad on his bed which helped. 2)My daughter also gets very hot at night. She often goes to sleep with frozen ice packs, 3)It’s really hard! I have been told bamboo clothing and sheets 4)My daughter has ichthyosis vulgaris and doesn’t sweat. She drinks a lot of water and does her creams before bedtime to feel cooler. She has a lot of accidents though so she wears a nighttime pull up. Usually it’s about 3 glasses of water before she feels comfortable laying down. I do understand this though, the room can be 70 degrees and she always feels hotter when getting into bed.?

Q: "Update on the extreme dry skin situation. We started using a humidifier in my daughter’s room and using vegetable glycerin under her aquaphor and her skin is 10X better. It’s no longer dry in the morning and I don’t even have to apply cream in the morning!! (except for her face after she washes it). I guess humidifiers really do make a big difference in winter months when it’s so dry in the house!! I’ve also started using Urea 22% on her feet and they’re not as thick and dry as before but they remain the driest part of her body. Thank you everyone for your sharing your ideas with us!"

A: We love glycerin based lotions and I don't know what we'd do without our whole house humidistat.

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