Why Nutrition is important for EB?

Every child needs to get a balanced diet to be well nourished to enjoy the best possible life. This is important for children living with Epidermolysis Bullosa (EB).The intake of nutritional diet is limited by many factors in EB. Most of the nutrients consumed are diverted away from growth to wound healing. There are no special diets to cure EB.
Nutrition is most important for the people living with EB because it helps to: 

  • Cover ups the nutrients lost through wounds and lesions
  • To supplement the nutrients necessary for optimal healing.
  • Maintain and improves the immune system to defend the body against infection, bacteria.
  • Promotes the normal functioning of the stomach
  • Avoids constipation

What is Nutrition Diet?

A nutritious diet comprises of a balance of:

  • Proteins
  • Carbohydrates
  • Fibers
  • Vitamins
  • Fats
  • Minerals

There is constant loss of body fluids and blisters cause loss of nutrients from the body surface. Skin and body needs constant repair work and sufficient nutrients for the optimum metabolic rate. So the consumption of healthy diet with these elements is crucial for growth and wound healing

Important Source of Nutrients

Milk, Yogurt, Dairy products, Fish meat, eggs, vegetable proteins- Pulses (peas, Beans and lentils), nuts and cereals

Butter, Cream, oil, Full cream milk, Full fat yogurt, Oily fish, avocados, Nut butters and chocolates

Biscuits, Honey, Sugar, jam, Pasta, Bread, Potatoes, Breakfast cereals, Puddings and cakes

Breakfast cereals, Wheat barley, Dry fruits, Fresh fruits and vegetables

Vitamins are very important for child’s health.

  • Vitamin A is found mainly in liver, milk, oily fish such as mackerel, fortified margarine and yoghurt. Green Vegetables are also rich source of Vitamin A.
  • Vitamin B is found in dairy foods, meat, eggs, bread, cereal products and potatoes
  • Vitamin C is found mainly in fruit, especially citrus fruit, blackcurrant drinks
  • Vitamin D is found in butter, margarine, oily fish, evaporated and dried milk, eggs and liver, with fish liver oils being the best source.
  • Vitamin E is found in vegetable oils, nuts, green leafy vegetables and wheatgerm

Minerals, like vitamins, are essential for health and growth and a well-balanced diet usually provides adequate amounts for normal requirements. Iron, zinc, selenium and calcium are particularly important in EB.

Meat (especially liver, kidney and corned beef), bread and fortified breakfast cereals

 

Meat, shellfish

Nuts, dairy foods, some seeds and grains

It is essential for healthy bones and teeth. Yogurt and Milk are rich source of calcium which fortifies the bones.

Note:

Children with mouth and throat blisters can find high fiber foods difficult to chew and swallow. Citrus fruits (oranges, tangerines etc.) and tomatoes may irritate the mouth if it is blistered or sore.

Common Nutritional Problems in people with EB

Children suffering from EB sometimes find it difficult to eat, chew and swallow which hinders to satisfy the nutrition demands and healing process of wounds.

Reason for the Inadequate Intake of food can be:

  • Blisters in the mouth
  • Tooth decay
  • Fragile gums
  • Poor mobility of tongue

Inadequate Intake of food may lead to:

  • Constipation
  • Anemia
  • Osteoporosis

Management of Nutritional Problems

It is very important to solve the nutritional problem as this will effect growth and wound healing process. Various methods listed below can be opted as a solution for the problems:

  • Pureeing food fosters your child to eat with greater ease and confidence. Some children with moderate or severe form of EB can manage to eat only soft, pureed and liquid foods.
  • You can make pureed food more attractive by adding carrots, baked beans and peas. This also allows the child to savor the different tastes of each food on his plate.
  • Use soup, full fat milk, white sauce or full fat coconut milk to puree foods rather than water.
  • Add grated cheese/cream cheese/mayonnaise to mashed potato, baked beans, spaghetti, omelet/scrambled eggs
  • Add butter, margarine, olive oil or mayonnaise to hot vegetables
  • Add 2-3 teaspoons single/whipping cream or evaporated milk to mashed potato, sauce, yoghurts, custard, mousse, jelly. (Cream or evaporated milk can be frozen in ice cube trays for easy access)
  • Spread butter, margarine, cream cheese or smooth nut butter liberally on bread, soft toast and plain sweet and savory biscuits
  • Top bread or biscuits with jam, honey, lemon cheese or chocolate spread. Mix any of these spreads into milk puddings or yogurt
  • Banana mashed with brown sugar
  • Mango mixed with cheese
  • Add 1-2 teaspoons of sugar to breakfast cereals, yoghurts, stewed fruits
  • Make up packet jelly using a small tin of evaporated milk to replace an equal volume of water
  • Zinc and iron supplementation are very crucial for child’s growth and skin.
  • Always use supplements rich in zinc, iron and selenium. Consult your EB nutrition expert before using

Monitoring the Intake of Sugar

Dentists recommend that the frequency of sugar consumption is as important as the overall amount taken. So if sugary foods are restricted to mealtimes, they are less damaging to teeth than if they are eaten alone.
For example: A chocolate biscuit eaten with a meal is less harmful than when it is eaten between meals.

So it is important to strike a balance between the sugar consumption and minimizing the likelihood of dental issues.

Constipation

  • Constipation leaves devastating effects on the child’s stomach. EB child feels uncomfortable and apathetic at the same time.
  • Some children’s stools are hard and constipated
  • Some feel pain excreting out their bowels even when they are soft.
  • Chronic constipation can tear anal skin, leaving the child in pain every time he opens his bowels.
  • Increase fiber intake
  • Use laxatives on Doctor’s Advice
  • Eat fruit, especially raw. Leave the skin on apples, pears, apricots, peaches, grapes etc.
  • Include cereal fiber by using wholegrain breakfast cereals such as Weetabix®, Bran Flakes®, porridge. Try whole meal bread, wholegrain biscuits e.g. Digestive and cereal bars, brown rice and whole meal pasta. Try using 50% whole meal and 50% white flour in home baking.
  • Children who can’t eat enough fibers, may benefit from Pure fiber source (Novartis), Mix this with different vegetables and fruits to make it acceptable.
  • Laxatives can improve constipation by only if the child is suffering from severe constipation, laxatives and softeners are used excessive use can result in loose motion. Use laxatives after discussing it with your EB expert or Doctor.
  • Breakfast Cereal (ideally containing fiber, e.g. Weetabix, or porridge) plus milk
  • Bread or toast (preferably whole meal) with butter/margarine, honey, jam, marmalade, peanut butter Milk
  • Mid-morning Milk
  • Water, diluted fresh fruit juice or fruit squash plus fresh fruit, biscuit or cake
  • Lunch Meat with gravy or fish and sauce Potato, rice or pasta
  • Two vegetables or a dish such as lasagna, shepherd’s pie, macaroni cheese Fresh or tinned fruit, ice cream, custard Milk

Note:

Aim for 500ml full fat milk per day unless excessive weight gain is a problem in which case semi-skimmed milk should be used.

Important Recipes

Breakfast

  • Cereal (ideally containing fibre, e.g. Weetabix®, or porridge) plus milk
  • Bread or toast (preferably whole meal) with butter/margarine, honey, jam, marmalade, peanut butter
  • Milk

Mid Morning

  • Milk, water, diluted fresh fruit juice or fruit squash plus fresh fruit, biscuit or cake

Lunch

  • Meat with gravy or fish and sauce Potato, rice or pasta Two vegetables or a dish such as lasagna, shepherd’s pie, macaroni cheese Fresh or tinned fruit, ice cream, custard
  • Milk, water, diluted fresh fruit juice or fruit squash

Evening

  • Egg, ham, cheese, baked beans, sardines, liver sausage Jacket potato or whole meal bread and butter/margarine Yogurtor milk pudding e.g. custard, rice
  • Milk, water, diluted fresh fruit juice or fruit squash

Bedtime

Milk or cereal and milk