Date: 09/18/2012

Because the skin is the largest organ of the body and because it has a very large surface area in contact with the environment, what happens to the skin has a significant impact on the whole body. It is important to realize that the skin requires large amounts of iron, minerals, and particularly protein to continue functioning. Increased loss of skin from the surface puts an enormous strain on one’s entire system.

Children with hyperproliferative types of ichthyosis, such as widespread Netherton syndrome, EHK, and CIE, where there is rapid skin turnover, are at most risk for growth retardation.  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 helpful.

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 probably 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.

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.

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.
  • Try planning a daily eating schedule, which might include three meals and three snacks. Keep plenty of healthy snack choices on hand
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