http://www.debra.org/modules.php?op=modload&name=News&file=article&sid=19#1
This website had an excellent summary of the disorder as well as treatment
options and nutritional support.
 It says this about nutrition and breastfeeding:
"Attention to the nutrition of the child may be important from the beginning.
Immediately after birth, fluid and protein loss, which may cause chemical
imbalances, can be a major complication in recessive and some dominant types of
EB. Unless the baby requires isolation for medical reasons, closeness of the
mother and child should be encouraged and will help make early feedings
successful. Oral or breast feedings can begin as soon as the sucking reflex is
demonstrated, unless the doctor indicates otherwise. If the infant has difficulty
sucking because of blisters in the mouth, use a preemie nipple (a soft nipple
having holes large enough to permit milk to drop into the mouth), a rubber-tipped
medicine dropper or a syringe. Powdered nutritional amplifiers, which can add
calories and protein, are now available that can be mixed with mother's milk,
and there are formulas that have higher than average calorie and protein
concentrations."
Mardrey Swenson DC, IBCLC


Nutritional Concerns
Good nutrition is essential for all children, but may be more difficult to
achieve for a child with a chronic disease such as epidermolysis bullosa.
Nutritional research on EB is in an early stage. However, knowledge gained
from working with people with similar conditions, such as skin ulcers or burns,
can be helpful for people with EB. Patients with skin ulcers or burns need
increased protein and calories. Thus, a person with EB also may need to increase
both calories and protein, depending on the severity of the disease. These
extra nutritional demands on the body are due to tissue regeneration, fluid
replacement and protein loss associated with blistering.
Attention to the nutrition of the child may be important from the beginning.
Immediately after birth, fluid and protein loss, which may cause chemical
imbalances, can be a major complication in recessive and some dominant types of
EB. Unless the baby requires isolation for medical reasons, closeness of the
mother and child should be encouraged and will help make early feedings
successful. Oral or breast feedings can begin as soon as the sucking reflex is
demonstrated, unless the doctor indicates otherwise. If the infant has difficulty
sucking because of blisters in the mouth, use a preemie nipple (a soft nipple
having holes large enough to permit milk to drop into the mouth), a rubber-tipped
medicine dropper or a syringe. Powdered nutritional amplifiers, which can add
calories and protein, are now available that can be mixed with mother's milk,
and there are formulas that have higher than average calorie and protein
concentrations. Follow the physician and/or dietitian's instructions in the use of
such products and in the selection of an appropriate formula.
When the child is about six months old and pureed food has been introduced,
it can be helpful to add extra liquid to the pureed food to facilitate
swallowing in those who have mouth blisters. Hot drinks or foods can be irritating; if
so, beverages and foods should be served lukewarm, at room temperature, or
cold.
Dysphagia (difficulty in swallowing) can be a major complication, as EB can
cause blistering in the mouth and/or the esophagus. A parent should watch when
hard-crusted foods such as toast or crackers are introduced in the child's
diet to see if they provoke blistering or a problem when swallowing. Acidic foods
and drinks can also be irritating when an ulcer in the mouth is active;
therefore, tomatoes and citrus juices may need to be avoided. If the child can
tolerate milk, whole milk can be enriched by adding an "instant breakfast" mix or
flavorings. A "fortified milk" can be prepared by adding nonfat dry milk
powder to whole milk. "Fortified" milk can be served plain, flavors added or used
to make sauces, cream soups, warm, not hot cereals, mashed potatoes,
milkshakes, custards, puddings, and cocoa; it can be used in any recipe calling for milk
to add extra calories and protein. If milk is not tolerated, liquid
nutritional supplements may be recommended. These can be purchased at a pharmacy upon
advice of a physician and/or dietitian. Most liquid supplements can be used in
recipes such as custards, puddings, and soups and are available in a variety
of flavors. It is wise to interchange products and flavors to offer variety so
the child will not become bored. Some have found it helpful to start and
complete each feeding with a cool, not cold, good tasting liquid including ice
cream or cool liquid frozen yogurt.
Even when a child with EB does not have oral blistering or swallowing
problems, he or she may need supplements of high-calorie, or high-protein drinks or
of vitamins, minerals and trace elements.
The physician should be consulted as to whether a supplement is needed and,
if so, the amount to be prescribed. Large doses of vitamins and minerals
(megadoses) are not recommended. Caution should be exercised in terms of any diet or
supplement that promises miraculous results. Such approaches are often
attractive to parents of children with chronic diseases, but such alternatives to a
varied, nutritious diet can result in malnutrition.

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