Adequate nutrition may be challenging at times for children and adults with ichthyosis.  In this section you will learn why ichthyosis, or a related skin disorder, may increase the calorie and nutrient requirement for your child.  But not to worry, this section is also chock full of tips and tricks, from parents of children with ichthyosis themselves, to ensure your child is adequately nourished and will successfully thrive and grow throughout their childhood.

Why is nutrition a challenge for those affected with ichthyosis?

Since the skin is the largest organ of the body, and has a significant impact on the protection of the body, it is important to realize that the skin requires large amounts of iron, minerals, and particularly protein to continue functioning at its best. Increased loss of skin from the surface, as many with ichthyosis experience, puts an enormous strain on one’s entire system.

Children with hyperproliferative types of ichthyosis, such as widespread Netherton syndrome, harlequin, EI, and CIE, where there is rapid skin turnover, are at most risk for issue with growth failure.  The nutritional demands are very high for these skin types and are even higher in children who are growing rapidly to begin with. Many children with ichthyosis consume enough calories and nutrition to support normal growth, but they do not consume enough calories to compensate for the increased demand of their ichthyosis.  Infants with ichthyosis may need supplemental feedings and nutritional supplements to support their growth.  Consulting with a nutritionist may be help to guide you along the way.

Children with poor skin barriers need foods that are adequate or even “super-adequate” in their protein and iron content just to maintain “normal” growth. Some children with ichthyosis may be smaller than other siblings in the family, which may relate, at least in part, to their nutrition. Thus, a good diet and supplementary vitamins and minerals are important.

Infants with severe forms of ichthyosis may be born prematurely and are small for their gestational age, and when nursing they may suck poorly due to restriction of the inflexible skin around the mouth. The breast, of course, is flexible to the mouth of the infant and is therefore preferred. Failing this, a preemie nipple (one that is more flexible and doesn’t require a strong suck to deliver) may be used with the holes slightly enlarged to better deliver milk. Look for nipples labeled “Neonatal,” “Premature,” or “Natural Flow.”  Again, breast milk is high in minerals, vitamins, and protein. It is important for mothers to maintain good nutrition so infants will get the highest quality milk. Of course, if formula is used it should be one enriched with iron.

Solid foods should be introduced at the normal time, at four to six months of age. Enriched baby cereal is an excellent first food because the protein in the cereal is the best absorbed of all suitable infant proteins. When your baby is ready for more texture, try whole grain cereals. Also, if growth failure is a concern, consider perhaps introducing high calorie drink supplements at the earliest age possible.  These drinks are not very tasty; introducing them early can help ensure young children will actually drink them.

Many nutritionists feel that children should not be subjected to adult “diets” that are low in cholesterol and fats because children need the cholesterol and the nutrients in all dairy products, and in eggs, for normal body and brain growth. This is particularly true for children with ichthyosis who need whole milk, especially during the growing years.

Logan craves salt.  His nutritionist told us not to restrict salt from his diet; that his body was craving it for a reason.  He needs lots of water and needs the extra salt he craves. “- Camilla Strickler

Managing your child’s diet on top of round-the-clock skin care is not easy. Your child’s pediatrician or a nutritionist can help you develop a balanced diet plan that is nutritionally and developmentally appropriate for your child.

If you are not already aware of which foods are high in iron, protein, vitamins, and minerals, excellent books are available at many libraries and bookstores. Nutritional services may be available at agencies in your area.

While not all children with ichthyosis experience growth problems, a significant number do.  If your child with ichthyosis begins to experience these problems, have your child evaluated by a pediatrician. Consider the following helpful hints:

  • Try to keep a written record of everything your child consumes each day. Feed infant cereal until your child is at least 12 to 18 months, since it is the best absorbed of all infant-suitable proteins.
  • Offer nutritious and interesting meals and snacks.
  • Respect your child’s ability to know when he or she has had enough to eat.  Offer plenty of liquids, since water is lost through the skin. This is especially important when your child has diarrhea or is vomiting.
  • Don't let meal times become burdensome or stressful. Keep feeding times pleasant and relaxed.

TTry planning a daily eating schedule, which might include three meals and three snacks. Keep plenty of healthy snack choices on hand. Here’s a few to cconsider:

  • Include fortifying drinks with their meals
  • Bulking up with butter and oils
  • Incorporating lots of high-calorie or high-fat foods into their meals like avocados and peanut butter
  • Perhaps letting them have dessert even if they just picked through dinner
  • Try smoothies, with regular yogurt, not low-fat.
  • You may consider letting them snack when they are hungry. If a schedule is not working and they are hungry for snacks more sporadically around meal time, it is suggested to let them snack so they can absorb the extra calories they need.

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The information on these pages has been provided through the generosity of the Ace in the Hole Foundation.

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors nor Foundation staff and officials and sponsoring foundations endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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