Date: 07/21/2021

Q: Does anyone else’s child have trouble staying warm when they’re wet? What causes this? I bought an inflatable pool to try to combat the heat wave we’re experiencing, since the only way my child can be in this heat is to be in water (she doesn’t sweat). But when she gets out, she shivers and her lips turn blue!  This has NEVER happened in the cold (and we live in Canada and do lots of sledding and skating) - only when she’s wet.  So weird.

A:

• This is the same for my twins! We live in Tennessee (from Canada too actually!) and in the hot months we can’t be outside more than a couple minutes before they overheat unless we are in the water. But it could be 90° outside and sunny and the second they get out of the water (sometimes even still while in the pool) they are shivering uncontrollably and teeth chattering and blue lips. They ignore it and say they are fine but they clearly aren’t.
• Yes! Ok it must be an ichthyosis thing then. I wonder why it happens.
• Me too! It seems so counter intuitive to their reactions to temperature in every other situation.
• My daughter does this! And she takes longer to warm up then the other kids.
• Yes I have a heck of a time warming her up when she gets like this!
• Yes! And I have to remind my daughter of that after she showers at night and wants to leave her hair wet.
• Wow, I never noticed but this is so very true for my daughter with EI as well! She loves the NY winter and being outside and is never too cold for that... it could be 80 outside and she shivers when wet! Takes her a bit as well to finally warm up.
• I struggle with heat and with cold. I bathe in hot water in summer, because the blood chills and I shiver badly. I sleep on a warm electric blanket.
• Very interesting, thanks for sharing!
• My son is like this too. He’s 1.5 and the moment he gets out of the (warm) bath and we’re doing his lotion/getting him dressed he’s shivering uncontrollably and takes a long time to warm up. He’s fine while he’s in the water but the second he’s out and wet he’s shivering. I thought it was his age but sounds like it’s the ichthyosis.
• Definitely seems to be an ichthyosis thing!
• My daughter is like this too and we don't go swimming because we don't have a pool. It's when she gets out of the tub it's like she's purple.
• My daughter is like this too. She has spent hours the last few days in the garden paddling pool as temperature in Ireland has been very hot. I notice she will start shivering as she gets cold but will not be aware of being cold until she has a major shiver going. Similar situation to when she is getting hot. She has EI and is 4 1/2. My understanding is that the skin is the organ for regulating body temperature. Produces sweat to cool and and hairs rise to trap air to stay warm. Sends signal to brain of what is happening. From my experience her skin cannot regulate temperature as non EI skin can. She always has major issues with transmissions in environment temperature. So, I believe it works both ways. Skin lags in temperature adjustment. Then perhaps normal signals that would tell her body of a problem with temperature are lacking. Then it is body's emergency system that is the first to kick in. So in heat, flushed face gives a visual warning and I act to remove clothing, apply cold towel and provide fluids. I suppose I don't react to her showing signs of getting cold as quickly and once the body starts to shiver it starts a whole body response. Think of a new born baby. Their responses to temperature are pretty radical. As they grow up they become more aware of this and will verbalize or cry to indicate temperature discomfort. I feel at 4 1/2 my daughter’s body still does not receive normal responses and relies on body emergency system. This is just my experience and I am an engineer and not a doctor. But in 4 1/2 years I am learning a lot about EI as limited knowledge within medical system here.
• Thank you ?? I have read a few articles that associate higher risk of cardiac events in people affected by Ichthyosis because of this constant emergency response to temperature. In some ways I’m lucky because I have an impaired skin barrier with eczema versus my daughters EI. I notice temperature effects much more quickly than my family who have typical skin. If I start to feel hot or cold, I act for my daughter, but if I’m not in the pool with her for example, it’s only once the full body shiver and slight tinge of blue to the lips happens that she really starts to complain. I tend to have a warm bath waiting for her after her pool time however, but this isn’t always a possibility. My daughter is 2 and a half with EI.
• This is a great explanation and totally makes sense to me. I couldn't have explained it like that and I have EI/EHK (I'm almost 43 haha). Thank you for this, every day is a learning curve even for those of us with the condition.
• I think this is a great description of what is likely happening! It’s interesting it seems to happen when people get wet. It’s like their bodies aren’t used to the evaporation of liquid off skin that kind of mimics sweating, so their body can’t comprehend it and thinks they’re freezing. I just find it so interesting because we can go sledding in -20 weather for hours, and my daughter has never complained of being cold.
• Yes, I could go on and on about this one and how I try to help him manage it. But I’d suggest managing internal temp too. On a hot day, in a cold pool or after a bath while getting lotioned I still have warm milk/water or apple cider available. For the beach I pack something warm for him to drink just in case. I also buy a small dollar store pool to put beside ours and make that a hot warm up pool. Also warm his lotion up by setting in a baby wipes warmer, or hot water (a tip from this group), & he appreciates it ??
• I swear you always have the best tips! I never have thought about managing internal temp like that.
•  I love the idea of a warm drink! Great ideas!
• My 10 year old daughter and I both have EI/EHK and we are exactly the same every time we get out of the bath or shower. It takes us ages to get warm afterwards ??
• They can’t regulate their own temperature, so this includes cold as well. I bought my two girls (CIE) cheap kid wetsuits on Amazon that just go down to their knees for swimming.
• Oh that’s such a good idea. Maybe I’ll get a warm belly suit.
• My son gets super cold in the cold pool, but he also has zero body fat so I think that plays a part too. He wears a long-sleeved swim shirt if the water isn't warm.Tia Saxon my girl is also very lean, so that’s probably a contributing factor!
• My grandsons fingers and toes turn blue when he gets a bath and feel ice cold. I can't help but wonder if circulation isn't a problem.
•  I’ve often wondered whether Reynaud’s is linked with ichthyosis also?
• Not sure about that but his fingers and toes do this every time he takes a bath even when the water is warm. Ever since he was little.
• This is so interesting. My son also seems fine in the winter. He has a much harder time with overheating in the summer. But, I definitely notice him absolutely freezing after being in the pool, full body shiver and blue lips, much different response than my non-affected daughter