Children with ichthyosis are more vulnerable than most children to temperature and the weather. Overheating can become a significant problem since the child’s thickened skin may not allow the body to get rid of body heat through sweating to the same extent as an unaffected person. During hot weather and when your child is active at play, watch carefully for signs of overheating. The skin may redden, your child may appear cranky, and, when seriously overheated, your child may become listless and lethargic. Although a child may one day outgrow their inability to sweat properly, overheating is a potentially dangerous situation, and steps must be taken immediately to bring your child’s core temperature down to normal levels.

  • Take him or her into a cool environment and, if necessary, put him or her into a lukewarm bath – not a cold bath.
  • Applying wet, cool washcloths to the face and extremities may also be helpful if the overheating is not yet too serious. 

However, the best treatment of overheating is prevention. Some preventative steps to consider include,

  • Make ice water or juice available all the time. 
  • Always be aware of where there is a shaded area in the immediate environment, to cool down.
  • A spray bottle of cold water is useful for counteracting the effects of hot weather, for example when riding in a car.
  • For outside play during warm weather, one idea may be to dress your child in wet clothes.
  • Try “cooling vests,” which are pocketed smocks, stuffed with packs of frozen coolant gel.
  • Dress your child in layers that can be removed as needed.
  • When out in the sun, use a hat with a wide brim to protect both eyes and skin.
  • Ask your doctor about sunscreens.
  • Have cooling towels that are wet on hand when playing outside.
  • In excessively hot weather, your child may need to stay inside.
  • Keep caregivers in the know. If your child spends time in preschool or with any outside caregiver, the person must be aware of the signs of overheating, and must be able to respond to them at once.

Fevers and Overheating

When overheating is due to fever, try to keep the fever down with an aspirin substitute (for example, acetaminophen, or Tylenol); you may also use lukewarm baths to cool your child. During a fever, avoid thick creams that can hold in the heat. Many parents have noticed that after a high fever, their child’s skin takes a turn for the worse. Remember this is a temporary setback, but may require extra attention for a few days or more. Also, blister may be followed by a full body shed where the new skin is sensitive to the touch.

“Logan gets blister looking bumps (not technically blisters) on his fore head, back, under the knee area, and under his neck that can be painful.  Because preventing a high fever is so important to Logan, we alternate acetaminophen and ibuprofen every four hours when he is sick so that the medicine isn’t wearing off before the next dose.” – FIRST Parent, Camilla Strickler

FIRST publishes a resource sheet on overheating that details the signs and symptoms of overheating, what to do in a heat emergency, and resources for cooling products and sun protective clothing. 

Parent to Parent: When to Know When They’ve had Enough Heat
by FIRST member Mark Klafter

Long-time FIRST member, Mark Klafter, father of Adam Klafter, affected with epidermolytic Ichthyosis has been an active participant in FIRST activities and a frequent contributor to our FIRST for Parents Group on Facebook. His input as a mentor to other fathers and affected families has been invaluable. Here is Mark’s advice regarding temperature monitors and recognizing your child’s signs of overheating:

“I would advise caution on the temperature monitors. My fear is that you will be lulled into a false sense of security. Generally kids with ichthyosis will be over heated long before you’d see a noticeable change in the actual body temp. Think about it this way. When you’re hot, you perspire. That’s the body’s way of regulating temp. Correct? It’s no different with your child or mine. The problem is that the moisture generally gets trapped under the thickened or scaly skin and doesn’t really evaporate, making them actually hotter, not cooler.

My advice would be to watch your kids closely when the weather is warmer. Each will have their own tell-tale signs. Some kids get really red cheeks. Some will start scratching their head more. It can be a variety of things. Eventually you’ll learn what to look for in your own child. And with younger children, who likely aren’t going to say anything until it can be too late, you need to teach them to recognize signs in themselves. And as always, for newer parents, I recommend being in the warm sun in small doses to start out, so you can see how they handle it. Maybe five minutes outside, five minutes inside, then graduate to 10 outside, 10 inside, etc. You’ll learn fairly quickly what they can tolerate, as well as what the warning signs of overheating are for your child. Just my two-cents.”- Mark Klafter

Why doesnt' my child sweat?  Watch this...

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