Date: 12/10/2021

Q: Do your children with ichthyosis struggle with staying warm? My 9 y/o daughter is ALWAYS cold, like to the bone cold. I’m wondering if I should have some lab work drawn on her to make sure nothing else is going on.

A:

• My daughter is 13 and always freezing. I know a bunch of people with ichthyosis who are always cold.
• My daughter also always cold. She has CIE
• My son is always cold. Always.
• We are the opposite - my XLI is always hot and overheating.
• My xli son is the same!
• My son always hot
• Same xli and always warm
• Our affected child is the opposite…
• It might be something to check out, underactive thyroid, low blood pressure are a couple of things that can cause people to be cold.
• My almost 9 y.o. is cold so often. She'll have a blanket in every room. She wants to sleep in fleece, etc. But she would overheat if we didn't keep an eye on her.
• This is my daughter 100%!!!!
• My daughter would live cocooned all day long if we let her!
• My 16 (CIE) year old struggles with this. He doesn’t have any middle ground
• That is my daughter too.
• Yes, I do also and so does my son. We have EI ·
• I’m always freezing. I’m in winter boots, hat, scarf, gloves, and jacket and still cold and my kids are in shorts ?? It’s part of not being able to properly regulate body temperature.
• I overheat quickly as well if it’s hot somewhere. Seems like it’s one extreme or the other.
• My 2 year old is the opposite, he’s always hot and overheats when he’s outside and he also has CIE. During the summer he has to wear a cooling vest.
• My 12 year old seems to either be freezing most of the time (winter, spring, fall or inside/school) or in the summer if outside overheating.
• That seems to be my daughter as well but she seems colder than usual lately and it’s not even that cold yet where we live.
• Mine too. Some days she will say she literally feels like she’s freezing to death. I got her hand and foot warmers and a heated blanket and that has helped. I don’t think they are able to regulate temperatures as easily as unaffected.
• Her core temp has always been lower than normal, even as a newborn in the NICU
• Temp regulation problems are very common, it has to do with the skin barriers, if I remember correctly. I get cold easy and then take a long time to warm back up. I also get hot easy and take a long time to cool down.
• When I’m hot…I’m overheating and when I’m cold I’m frozen to the point where I’m sleepy.
• Lotions could make a person colder. Check for low iron too. My little guy hasn't used any lotions lately because his skin feels okay but it will surely make him colder in this weather when we do. LI. Currently running around in a diaper. ??‍??
• My son usually doesn’t take his winter jacket off at school. His preference is to be warm, but he definitely doesn’t need to be wearing his coat all the time. He doesn’t dress that warm at home.
• My daughter is the same as what's been mentioned here - always feeezing (she wears a sweater and extra leggings to school every day) but also she is the first of my kids to feel hot and she easily overheats. We were snowshoeing one Christmas and she was FREEZING and didn't want to go and in 5 minutes of hiking she started crying she was so hot. She is always feeling one of the extremes or the other....
• There seem to be some kids who run hotter and others who feel colder a lot. Mine is more likely to feel hot except his feet get cold. I worry about his circulation.
• I struggle with heat and cold..both..life is so difficult
• I have CIE. If the temp drops below 72, I'm cold. This time of year is awful.
• My son is always cold. I figure it's due to lack of body fat??‍??
• My daughter has HI & she is always cold!
• The skin barrier is one of our first defenses for everything. It’s how we fight infection and regulate temperature. We often talk about how ichthyosis leads to over-heating easily, but the truth is that this happens because the skin barrier in ichthyosis is impaired. This means both heat AND cold are difficult to regulate. I find that always having a layer of close fitting thin cotton helps my daughter regulate better. Then regular clothes go on top. In Winter I give her a warm drink to sip after she has her bath, whilst we do her lotions, it helps her to stay warm for longer, until I can get her clothes on.
• Hi, I am 20 years old and for as long as I can remember I've been fighting trying to stay warm. I have ns but what they found with me is that my body temp is lower than normal. I wear a hoodie for most of the year.