Your choice of diapers may depend on what type of ichthyosis your child has. Disposable diapers, particularly the super absorbent type, usually work well on children with ichthyosis (except those with Epidermolytic ichthyosis (EI), formerly epidermolytic hyperkeratosis (EHK)). They pull most wetness away from direct contact with the skin, and they are occlusive (sealant), so they hold in moisture. Because of this, the skin in the diaper area may look better than on other parts of the body.

Babies with epidermolytic ichthyosis (EI) often cannot wear disposable diapers because they are too rough on the skin. All-cotton diapers don’t wick away moisture, but without consistent use of plastic pants, the moisture will evaporate and the cotton will be the least irritating. To counter the moisture loss, use petroleum jelly or similar occlusive often, and rub it in well. Thickly grease the diaper area to prevent urine or feces from contacting your infant’s skin, especially if he or she has deep, open cracks or raw patches.

If your EI baby has extremely fragile skin, he or she may not be able to wear diapers or clothing at all without blistering and peeling. In this case, buy or make oversized cotton receiving blankets. In the center of one, place a waterproof lap pad (available at baby stores) covered by layers of cotton diapers. Put your baby on top of the diapers without pinning them, and wrap him or her in a loose swaddle. (In the summertime, don’t even bother to swaddle. Just place your baby on top “au natural.”) If your baby still cannot wear diapers when he or she begins to roll over or crawl, make the lap pad and diaper layers bigger in the playpen. You will go through a lot of receiving blankets and diapers, but the mess will be minimal, and your baby will do better without the irritant of fastened clothing.

Ask your dermatologist about the best method of cleaning your baby at diaper changes. Some recommend unscented diaper wipes without alcohol, cotton balls covered with oil, or just plain water. Another mom suggests placing a roll of toilet paper into a large plastic bag into which a small amount of baby oil has been added. The toilet paper will absorb the oil, and the plastic bag makes the whole ensemble easy to carry in a diaper bag.

Tips for Purchasing Clothing for your Child

  • Buy clothes a little large, so they do not rub.
  • If your child’s skin is especially sensitive, turn outfits inside out to avoid having the seams rub.  100% or mostly cotton clothing is the least irritating. 
  • Avoid elastic.
  • Avoid polyester, especially acrylic sweaters, since it can irritate the skin.
  • Avoid the heavy flannel pajamas as they don’t let the skin breath and many times keep the infant too warm while they sleep.
  • Take your child with you while shopping and rub his or her hand on clothing you are uncertain about.  If it catches, do not buy it. 
  • Babies and young children tend to scratch themselves until they are raw and bleeding.  One-piece footed pajamas, outfits, or “onesie” type shirts with overalls tend to prevent scratching to rawness or infection in children under age 3. However you may want to consider lightweight material, as onesie’s, particularly fleece, can may cause the child to become overheated.
  • Don’t spend too much money on expensive clothing, until you find a brand that you like that holds up against the lotions and creams.

Most babies, whether they have ichthyosis or not, need nothing on their feet, which can be especially sensitive. This will change once they begin walking, as walking barefoot dries out the feet and pressure from walking can cause cracks in thicker calloused areas such as the heel.  Sandals may not be a the best options but wearing shoes and socks helps keep the feet hydrated and reduces the depth and frequency of the cracks.

Using a heater and a humidifier may keep the room warm enough so clothes will not be needed. Also, putting your baby on a lambskin pad in the crib or playpen will help him or her maintain body temperature while providing extra soft padding.

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