EB Patients’ Favorite Foods

Mac & Cheese

It is excruciatingly hard to feed a child with RDEB (Recessive Dystrophic EB).
The mouth, throat and esophagus are prone to blisters, which, in turn, can and will produce scar tissue-enough to obstruct the passage of food through the esophagus. Because of this, RDEB children and adults can only eat mushy or liquid foods-or, at the very least, chew their food extremely well before they swallow it. Here is a list of some of the kids (and four adults!) on our list’s favorite foods-hopefully you can find something to bring variety to the table for your EB child…

Weston’s favorite foods – RDEB patient

Marshmallows
Pork and beans
Bananas and cool whip
Plain cheesecake
Juice from gumbo or soup
Potted meat stirred with mayo
Peanut butter and honey sandwich
Grilled cheese sandwich
Cottage cheese
Yogurt
Applesauce
Baked sweet potatoes
Pudding
White part of Oreo cookies
Cake
Banana
Mac and cheese
Cheese burger (minus the meat, onions and pickles)-eats a minuscule amt. of it though, nothing with a crunch or difficult to chew.
Rice is soft, but he cannot eat it.
Vienna sausages (dips them in mustard, ketchup, mayo)
Potted meat stirred with mayo
Peanut butter and honey sandwich
Peanut butter and banana mashed up together (not a sandwich)
Cheese burger (minus the meat, onions and pickles)-eats a minuscule amt. of it though, nothing with a crunch or difficult to chew.
Rice is soft, but he cannot eat it.
Vienna sausages (dips them in mustard, ketchup, mayo)
Peanut butter and banana mashed up together (not a sandwich)
Ice-cream milkshakes (pediasure, banana, peanut butter, ice-cream, choc. syrup), or just a shake made thin at a restaurant
Refried beans-but usually chokes on the little pieces of hull in it
Cheese plain, or dipped in peanut butter, or mayo, must. or ketchup
Mashed potatoes/baked potatoes (with cheese butter and sour cream)
Soft cookies of any kind without nuts or coconut or anything crunchy in it, those kind you can slice and bake, just slice them thick and cook them shorter and there ya go or the cookies at the mall! They are soft!!
Spaghettios, but sometimes chokes

Dana’s Favorite Foods – RDEB patient

Eggs
Pancakes
French toast
Dad’s Belgium waffles
Blueberry muffins
Liverwurst
Egg and chicken salad
Mary Kitchen corned beef
Stove top stuffing
Plum sauce
Spare ribs
Scallion pancakes
Soy sauce chicken
Steamed eggs
Ramen noodles
Ice cream
Pudding
Hershey bars (plain)
Reese’s PB Cups
Rolos
Plain m&m’s
Whole milk
Welch’s white grape
Wg-peach and pear
Mauni Lai juice
Snapple
Arizona
Lipton Brisk iced teas
Sodas
Cereal: Cheerios, Special K, Rice Crispies, Golden Grahams, Fruit Loops
Breyers Smooth & Creamy yogurt
Freihoffer’s Country white bread, seedless rye bread, sandwich rolls
Homepride wheat bread boiled ham, and the bread recipes from https://www.village-bakery.com
Honey roasted or smoked turkey
Chicken of the Sea tuna a la dad
Any creamed soup, Progresso chicken Noodle, Chickarina soups, Campbell’s
Tomato soup, egg drop hash Lipton noodles and sauce packets
Howard Johnson’s frozen mac and cheese (the best! but hard to find)
Granny Shu’s Chinese meatballs
Boiled chicken w/scallions
Pasta – vermicelli, angel hair, elbows, linguini, smooth ziti, penne, lasagna, and pastina. Regular spaghetti gives me huge mouth blisters EVERY time.
Meats- chicken in any form, meatloaf, hot dogs, flounder, sole, scallops, crab meat and crab cakes
Veggies – asparagus, broccoli, string beans, zucchini, carrots, cabbage, potatoes (mashed, mom’s diced, baked, french fries), onions, red and green peppers – all cooked really soft
Fruits-Canteloupe, bananas, cherries, peaches, pears, strawberries, blueberries, oranges, tangerines
Cheeses & dairy – American, Monterey jack, cheddar, Baby Bell, ricotta, fresh mozzarella, and Boursin soft garlic cheese (yum), sour cream (plain and mixed with sugar and vanilla extract), butter, mayonnaise, onion dip, tartar sauce
Crackers & Cookies – Ritz, Club, and Toasted Buttercrisp crackers, Pringles, Pepperidge Farm Milano and Mint Milano cookies, Hydrox, Vienna Fingers,sugar wafers
Kozy Shack rice pudding

Samantha’s Favorite Foods – RDEB patient

Flavor mashed potatoes
Tuna fish—fixed my way
Boiled chicken till it is mushy
Grilled cheese
Eggs
Macaroni&Cheese but only by Kraft “the Cheesiest”
Cream cheese and jelly sandwiches
Soups, chicken&stars by Campbell, and noodles, and rug rats all by Campbell
Sausage ham cheese cut into pieces
Greek olives, black olives, and green olives
Chinese boiled dumplings french toast

Andrew’s favorite foods – RDEB patient

Pudding
Ice cream
Chocolate popsicles
Yogurt
Pretzels
Sugar cookies
French fries
Whipped cream
Spinach and green beans and rice mashed up
He will generally try stuff (after we make a big deal about it) but if he gets even slightly choked that’s it, it will never pass his lips again. So we always start with something he likes to make sure his throat is not sore. Then we slip in the new thing. I have let Cheerios sit and get soggy and he will eat some of them. I guess that would work with any cereal. Eating is slow because he lets each mouthful get soggy before he will swallow.

Nicky’s favorite foods – child w/RDEB

Nutella
Peanut Butter
Whip Cream
Sour Cream
Butter-plain (I know…bleah)
Sugar
Teddy Graham
Vanilla wafers
Ice Cream
Spray Cheese
Yogurt
Pudding
Pancakes

Cassie’s favorite foods – RDEB

Pudding
Ice cream
Mashed potatoes
Soup
Egg salad
Cheese puffs
M&m minis
Yogurt
Alfredo sauce
Cream cheese
Ricotta cheese
Popsicles.

Cindy’s favorite foods – RDEB

Mac and Cheese
Alphabet Soup, Rugrats soup, Chicken and Stars all by Campbell’s
Pasta with tomato sauce (I have to take scissors and cut the pasta REAL SMALL and she will not eat the sauce is there are chunks of meat in it)
Soft french fries
McDonald’s Chicken Nuggets
Popcorn (if her throat and mouth aren’t too sore)
Real fruit popsicles (doesn’t care too much for ice cream but will eat it
sometimes)
Chocolate milk (I use fat free milk with chocolate Ovaltine for calories and
vitamins)

Jennifer’s favorite foods – Adult w/RDEB

Cheese
Mashed potatoes
Gravy Beef stew
Mac & chess
Spaghetti
Chocolate pudding
Chocolate Cookies
Chicken breast
Meat loaf
Packed potato
Eggs
Pizza
Teddy grahams
Peanut butter
Jelly Soups
Popsicle fudge bars YUMMY
I drink a boost three time a day.

Anne~Maire’s favorite foods – Age 3 w/DDEB

Noodles, any size shape and color
Cheese sauces
Gravy (white and brown)
Alfredo Sauce Rice, oatmeal, cream of wheat, and grits
Cheerios Yogurt, cream cheese, cottage cheese grapes (quartered), watermelon, strawberries, blackberries, boysenberries, cherries, BANANA, peaches (canned), and pears (canned) peanut butter (creamy)
All the flavors of Jams and Jellies hotdogs, vienna sausages, baloney, tuna (with mayo and sometimes even onion and celery and pickles), ribs on the bone, chicken thigh meat (cut up), pork chops on the bone (cut down to her size) squash, corn on the cob, broccoli, GREEN BEANS (and a dipping sauce is demanded), sometimes tomatoes
PUDDINGS (rice pudding is good for bedtime)

Bruce’s favorite foods – Adult w/RDEB-HS

Meat Loaf Pizza
Lemon pepper chicken
Steak or chicken (made by recipe)
Ham Pudding (banana or Choc.)
Rice kripies treats
Stuffing Turkey
Bake beans
Drinking Jell-O or eating it
Hot Choc.
French Toast
Mac & cheese w/ tuna (Velveeta)
Drink boost
Club Crackers w/ grape jelly
Love cookies (peanut butter, choc. chip, oatmeal)
Peanut butter
Spaghetti
Ice Cream (homemade)
Scrambled eggs
Bacon
Toast
Corn
Green Beans
Broccoli & cheese
Boston Market Meals & Stouffers (Frozen)
Roast Beef (tender in crock-pot w/ gravy)
Mashed Potatoes (Real Thing)
Milk Shakes (Strawberry)
Shrimp & Fish (Fresh from Morehead City, NC)
Hungry Man’s Turkey & Dressing
Muffins (blueberry or banana)

Bruce’s Tender Steak Recipe – Adult w/RDEB

For all of us with difficulty eating meats (Rib eye, T-Bone, Cube Steak) or chicken, that comes with having EB. Myself, I like steak, and other meats, but I don’t enjoy them when I have trouble eating, and chewing forever to swallow. Char Boiling, and frying don’t to the trick.

So, my mom beats the meat good, flour, and season it. Then she fry’s it briefly on both side until brown. The she takes a dish, puts hot water, then she puts about three beef bouillon cubes to devolve. Then put the steak in the dish, with a lid. Set the temperature oven for 350 degrees, bake the steak for at least 90 minutes, and it should be nice and tender, it may break apart. I will not eat steak any other way at home. I will not attempt to eat steak when I dine out. This way, it’s a much enjoyable way of eating steak that I ever had before. The longer you bake it, the easier the steak is more tender it will be. Cube steak, I like it in mushroom soup or beef bouillon cubes, and bake at 375 degrees for at least two hours, because cube steak is rubbery to me, (but it’s not my favorite). I would like feed back from anybody who does try this, and hear your opinions how the adults, and moms who have EB children. I had my share of problems with swallowing, and throat problems in my 32 1/2 years. I hope this will help everybody, because I think we all need protein in our regular diet, since we lose a lot through our skin, you could even start with protein smoothies to kick-start your metabolism little by little.

High Calories, EB Friendly Recipes

Collected by Melanie (Logan) England
unless otherwise noted

We all know how hard it is for EB patients to get enough calories and protein into their diet, especially when they have esophageal complications and require a soft diet. Here are a few recipes that have worked well in our home.

Homemade Spaghetti-Os

2 cups cooked ABC’s pasta
1 can tomato soup
1 can heavy cream

Cook pasta to desired tenderness and drain. Prepare tomato soup by adding 1 can of heavy cream instead of water. Mix past and soup together and top with grated cheese.

Chocolate Mousse

1-cup heavy cream
1 small package Jell-O instant chocolate pudding (or any flavor you prefer)

Put cream in freezer for 1 hour. It will whip better when chilled. After chilling remove and add 5 teaspoons of pudding mix. Mix on high speed with electric mixer until stiff peaks form. Eat as-is or freeze for a high calorie frozen treat. For a truly decadent dessert add shaved chocolate or chocolate syrup as a topping.

Egg drop Soup

5 cups water and 3 chicken bullion cubes OR 5 cups chicken stock.
2 eggs

Bring water to a boil and add bullion cubes. Let boil for 5 minutes, or just bring to a boil if using stock. Beat eggs and slowly drizzle from spoon or measuring cup into boiling stock to make thin ribbons of egg. Mushrooms, cubed tofu (very high in protein), or cooked chicken may be added if tolerated.

Fake-a-roni Bake

This recipe is very high in protein. Soy products are a great source of protein, but have gotten a bad rap as being tasteless. That really just depends on how it is cooked, and this recipe is really great.

2 cubes firm silken tofu
1-cup heavy cream
3 cups sharp cheddar cheese

Drain tofu by placing and a colander and pressing firmly with spoon or spatula. If it is dry enough it should crumble easily. Crumble into 9×13 baking dish and preheat oven to 350. To make cheese sauce put heavy cream in saucepan on low heat. Stir constantly, and when it begins to bubble slowly add 2 cups of cheddar cheese until it has all melted, still stirring constantly. Pour cheese sauce over tofu and garnish with 3rd cup of cheese. Bake until sauce is bubbly and cheese is melted on top.

Cream of Mushroom Soup

1 lb. Mushrooms
¼ cup butter
10oz concentrated beef broth
1 cup heavy cream

Wash and slice mushrooms. Sauté to desire consistency in ½ cup butter on low heat (about 30 minutes). Add beef broth and salt to taste. Simmer for 15-20 minutes. Remove from heat and add 1cup of heavy cream.

chocolate and strawberry milkshake500 Calorie Milkshake 🙂

1 pkg Instant Breakfast
1/2 cup 1/2&1/2
3/4 cup Ice Cream
blend into a milk shake form and eat with a spoon!
Here’s a couple of Recipes courtesy of Libby Ann Tyler

Surprise Cake

Ingredients:

3 eggs whites
1 cup of refined sugar
1 1/2 cup of plain flour
1/2 cup of milk
1/2 cup of chocolate powder
3 spoons of butter
1 spoon of baking powder

How to do it:

Mix the sugar, the yolks and the butter until it becomes a cream. Add the rest of the ingredients and, last, the ‘white part of the egg’ and the baking powder. Mix a lot and put in a pudding cake tin, already caramelized.

Pudding:

4 eggs
1 can of condensed milk
1 1/2 cup of milk

How to do it:

Mix all the ingredients in a liquidizer and put slowly over the cake in the cake tin. Put this cake tin in another one, but bigger, with water in it, to bake the cake not directly (I don’t know if it’s clear enough, it’s just that we have a name for this in Portuguese, hard to translate, don’t know if you have). It has to be baked for about 1 hour and a half.

Let it cool and take it of the cake tin. Serve it cold.

The other recipe is much more simple. All you need is meringue, strawberries or a very soft chocolate and a can of milk cream. Put the meringue in a glass tray and break it into smaller pieces. Then put the strawberries or chocolate in small pieces too over the meringue and last the milk cream. Put in the refrigerator for 4 or 5 hours and it’s ready to eat.

***

Here’s a couple of Recipes shared by Danell and copyright Board of Trustees University of Alabama at Birmingham.

Here is a recipe friendly for those with liquid diets.

Chocolate-peanut butter shake: Calorie content 1070.

1/2 c heavy whipping cream
3tbsp creamy peanut butter
3 tbsp chocolate syrup
1 1/2 c. chocolate ice cream (Ben and Jerry’s or Edy’s brands are really high in fat)

Blend in Blender, serve.

High Calorie Carnation Shake: 505 calories depending on wich ice cream you choose.

1/2 c. half and half
3/4 ice cream
1 pkg carnation instant breakfast

*match the flavors of your ice cream and instant breakfast such a sstrawberry, vanilla, or chocolate.

Blend and serve.

For more recipes please visit Cristina’s website: http://ebinfo.homestead.com/recipemain.html

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Diet for Epidermolysis Bullosa

Diet for Epidermolysis Bullosa
For children over 1 year

This is the transcript of a little booklet distributed by DEBRA UK called “Diet for Epidermolysis Bullosa”.

Thank you Brenda for typing this for us! 🙂

Nutrition in Epidermolysis Bullosa

Children with the more severe forms of EB have problems consuming an adequate food intake. This is caused by a combination of factors, namely the increased need for nutrient requirements and difficulties with eating and swallowing.
The purpose of this is to explain these factors, and to offer some practical solutions to the problems and difficulties. For those with no specific problems it will provide advice about normal, healthy eating.

A Balanced Diet

A balanced diet provides all the food that is needed to keep the body fit and healthy and a positive attitude to food and mealtimes will help encourage your child to eat a balanced diet. Some people have tried to take principles from the Keto Diet and have had some success.

Food is composed of many nutrients. These nutrients are usually categorized as:

Protein – Fat – Carbohydrate – Vitamins – Minerals

Fiber and Water – are also required to keep the body working well.

The various nutrients are used as ‘fuel’ to satisfy energy requirements or ‘building blocks’ to satisfy the body’s needs for growth and repair. Energy requirements will vary depending upon the physical activity; a lot of activity requires a lot of energy. Even those who take no exercise need energy to maintain normal body functions, such as breathing and digestion.

The need for building materials also varies. Requirements are relatively high for growing children and following blistering and loss of body fluids, when ‘repair work’ is underway. Repair work also requires energy, so fuel too needs to increase in these situations.

The major nutrients are:

Proteins
Proteins are essential constituents of all living cells and are, therefore necessary for the growth and repair of the human body.

Fats
Fats provide a large proportion of energy in the diet. 35 – 40 % of energy in normal diets is, in fact, provided by fats. They also form part of the essential structure of all living cells. Fats are only ‘bad’ foods if taken in excess of the body’s energy needs.

Carbohydrates
Carbohydrates are the major energy source of the diet. 45 – 50 % of energy in normal diets is provided by carbohydrate. They also form a part of the structure of all living cells.

Vitamins
Vitamins are essential for health and the normal functioning of the body but are only required in very small amounts. They can be thought of as specialist ‘building blocks’. Without vitamins many of the body’s basic processes, such as burning fuel or building new tissue, will not work. Each vitamin has a different but very specific function, for example, vitamin C is important in wound healing, Concentration in foodstuffs vary a lot and some foodstuffs are more vitamin rich than others. Oranges, for example are well know to be rich in vitamin C.

Minerals
Like the vitamins, minerals can be thought of as specialist ‘building blocks’ essential for normal body processes. There are approximately twenty essential minerals. Each has a different function, for example, iron is an essential component of blood. Some minerals, such as zinc and copper are called trace elements because only very small amounts are required.

Fiber
Fiber or roughage is the part of food that passes through the body without being absorbed. Although it has no energy value, it is nonetheless very important and provides bulk to the diet, assists normal gut and bowel function, and helps prevent constipation.

Most foods are a mixture of all or some of these nutrients. For example, bread contains all of them, and meat contains protein, fat, vitamins, minerals and water. A few foods provide only one or two nutrients. Sugar, for example, is all carbohydrates, and oil is all fat. Nonetheless each of these foods contributes to our energy needs and is important in the total diet.

A balanced diet can be achieved with many different combinations of foods. There is no one food which is essential for health, or indeed, which provides all the essential nutrients, except breast milk for babies and infant formula feeds. The very best way of ensuring your child receives a balanced diet is to include al wide range of foods.

The following foods are good sources of:
Protein – Carbohydrates – fats – Vitamins – minerals and Fiber

A balanced diet would contain foods from each group every day:
Protein – Meat, poultry, fish, eggs, cheese, milk, beans, lentils
Fats – Butter, Margarine, oil, cream, fatty meats, oily fish, eggs, cheese.
Carbohydrates – Bread, pasta, breakfast cereals, cakes, biscuits, potatoes, sugar.
Vitamins and minerals – Meat, fish, eggs, milk products, fruit, vegetables, cereals.
Fiber – Wholemeal bread, wholemeal flour and pasta, wholegrain breakfast cereals, wholegrain biscuits, brown rice, vegetables, lentils, haricot beans, kidney beans, and other pulses, fresh and dried fruit.

SUGGESTIONS FOR FEEDING A YOUNG GROWING CHILD

On Waking – Unsweetened fruit juice or milk or weak tea.

Breakfast – Wholegrain cereal e.g., Weetabix, porridge oats, full fat milk. Wholemeal bread or toast with butter or margarine, peanut butter, honey jam or marmalade. Milk to drink.

Mid morning – Milk or unsweetened fruit juice and or biscuit.

Lunch – Meat or chicken or fish or lentils. Sauce or gravy. Potato or rice or macaroni. Vegetables. Or ‘made up’ dish e.g., shepherds pie, fish pie, macaroni cheese, casserole or lasagna. Fruit, ice cream custard, yogurt or milk pudding. Unsweetened fruit juice or water.

Dinner – Ham, egg, cheese, baked beans, liver sausage, sardines or peanut butter. Wholemeal bread or toast with butter or margarine. Custard or yogurt and/or fruit. Milk to drink

Bedtime – milk to drink

Vitamins A, D and C drops Available from child welfare clinics and chemists

Fluoride drops (If the local water supply is not fluoridated) Available from chemists.

Dietary Problems in Epidermolysis Bullosa

Children wit severe EB usually find eating painful and difficult. Problems arise because they have increased requirements for protein and energy due to the blistering and fluid losses, and yet they cannot eat enough.

Blistering Mouth and Gums – Difficulty Swallowing – Dental Disease
A small mouth opening and / or an immobile tongue

All contribute to making eating a painful process and result in a poor food intake. An inadequate intake leads to nutritional deficiency, which is made worse by increased requirements for protein caused by blood losses from open blisters.

Pain on passing motions also contributes to constipation, and this is aggravated by an inadequate dietary fiber intake.

A vicious cycle is created and the constipation makes the child feel apathetic (listless) and uncomfortable. The effect of this is to put the child off his food and this results in a reduced food intake which make the constipation worse.

The effects of nutritional deficiency are many, and include growth retardation in children, poor wound healing, anemia and increased susceptibility to infection. A further vicious cycle may be established from iron treatment which also aggravates the child’s constipation resulting in further reduction in food intake.

Not all children with EB will experience all these problems. The most common nutrition problems are:

Dysphasia (Difficulty in/with swallowing)
This is a common complication of dystrophic EB of the recessive types, but is not restricted to them. The problem is caused by a number of factors. The scarring process in dystrophic EB leads to contraction of the mouth, fixation of the tongue and narrowing of the throat. In addition dental decay and blistering of the mouth and throat make it very difficult for children to chew and swallow. So eating becomes a very slow, tiring, painful process and anorexia (poor appetite) is very common.

Anemia
Anemia is a major problem in dystrophic and Junctional EB. It is caused by an inadequate dietary intake of iron together with a chronic loss of blood through skin, mouth, esophagus (throat) and anus. Severe anemia causes children to be tired and listless.

Dental Decay
Dental problems are common in children with severe dystrophic and Junctional EB. The teeth are prone to severe caries (decay) for two reasons: a high sugar intake and chronic mouth infection and gum disease together with blistering of the gums makes cleaning teeth painful. In dystrophic EB scarring and fixation of the tongue aggravates the situation by making normal cleaning impossible and allows residual food to stagnate around the tooth/gum margin.

Feeding Children with Epidermolysis Bullosa

Good nutrition is essential for everybody but for children with EB, it is crucial to minimize the complications of the disease. A well nourished child will have wounds which heal more rapidly, blisters which are unlikely to become infected, a good chance of achieving the best possible growth and reduced risk of anemia constipation and dental caries.

It may not be possible to eliminate all of these problems, particularly in the more severe forms of the disease, but we believe that good nutrition can help reduce these problems. Attention to the diet from an early age is essential. Much time is given to learning wound dressing routines and time is needed to learn about nutrition.

The main problems to be confronted are:
1. Poor appetite
2. High nutritional requirements.
3. Pain and difficulties with eating.

Nutritional intake can be improved in many ways. Some helpful tips will be given later. The complex nature of the disease means that often in solving one problem another is created. For example, some children with dysphasia require a smooth diet but straining the food to remove the lumps reduces the fiber content, thus increasing the likelihood of constipation. Likewise, although adding sugar to the diet increases the energy content, it also provokes dental caries.

The following are intended as guidelines for feeding children with EB (more specific ideas for meals will be given later):

Meals should be happy occasions for parents and child. Be firm but gentle, give praise and encouragement when food is eaten but never scold or force-feed when it is refused.

Your child is likely to have a small appetite. More food may be consumed by giving 3 small meals and 2-3 snacks a day rather than 3 large meals a day. Do not allow mealtimes to linger, it is boring and tiring for the child and frustration for you. Set a time limit on meals and snacks.

Give a limited number of distinct meals and snacks, and avoid continuos eating through the day. This will help your child to develop and appetite and also stimulate the gut, thus reducing the likelihood of constipation.

Tempt small appetites with attractive food. Cut sandwiches into small animal shapes, make jelly animals, give drinks from cartons with bendy straws. Use colorful crockery and only put a small amount of food on the plate. The child can always ask for more. Use colorful food for pureed diets, such as peas, baked beans and carrots and serve each item separately on the plate.

Use high energy foods, such as cheese, milk, cream and butter to increase the energy content of the diet

Blistered mouths can be very sensitive to high temperatures. Do not serve hot food; serve food warm or cold. Cold food and drinks may be particularly soothing when the mouth and throat are sore. They even make swallowing easier.

Adjust the texture of the food to suit the state of the mouth and throat. Soft or pureed foods are easier to eat when the mouth and throat are blistered. Scratchy foods, such as hard toast and crisps, may actually cause blisters. They should be avoided in children whose mouths blister easily

Acidic food and drink, for example, citrus fruit, may irritate a sore mouth and throat.

To compensate for bad days, make the most of days when the mouth is not sore and the appetite is good.

Involve your child as much as possible. Teach him about nutrition from an early age and allow him to help in the planning and preparation of his meals

Do not forget to give him the vitamin and mineral supplements that have been prescribed. Give only the dose that has been recommended. Excess vitamins and minerals can be dangerous, you can visit https://dietagem.com/quitoplan-funciona-emagrece-resenha/ where you will find the supplements you need.

If, after reading this, you are still concerned about your child’s diet, ask your doctor to refer you to a dietitian.

Fortified milk shake
200 mls (7oz) cows milk.
1 brickette or 1 large tablespoon ice cream
3 level tablespoons skimmed milk powder
Flavoring or milk shake syrup
Whisk together and chill
If the flavoring is omitted, this may be used for cereals

Yogurt drink
1 small (5oz) carton yogurt
3 teaspoons honey
1 banana
150 mls (5oz) orange juice
Liquidise together until smooth

Juice shake
100 mls (3 = oz) prune or orange juice
2 teaspoons brown sugar
mix together and chill
this is good for constipation

Banana Shake
150 mls (5 oz) cows milk
1 dessert spoon double cream
3 level tablespoons skimmed milk powder
1 banana or 60g (2oz) tinned fruit
2 heaped teaspoons sugar
Liquidise together and chill

Fruit drink
100 mls (3 = oz) evaporated milk
100g (3 = oz) tinned fruit in syrup
Liquidise together until smooth

**Use gold top milk if possible,
Otherwise silver or red top, but not Skimmed
or semi-skimmed milk.
Only use skimmed milk powder As indicated
in the recipes where The aim is to increase
the protein Content of the drink.

Nutritional Supplements

There are many nutritional supplements available in liquid or powder form. Each product varies in composition, some being complete meal replacements. Others are supplements of carbohydrate and/or fat, which can be added to other food and drinks to increase their energy content. Some are commercially available ‘over the counter’ from chemists and others are prescribable.

Chewing and swallowing difficulties

A sore mouth and narrow throat means that some children with EB can only eat soft or pureed foods. Such diets can become boring if you rely on soup and ice cream but with a little imagination and effort, they can be appetizing and nutritious.

Try some of the following:

Soups with added cream
Scrambled eggs, omelets, poached eggs
Cottage, cream or grated cheese
Sweet or savory pancakes and soufflis
Pouched or flaked fish in a sauce
Braised meat, shepherds pie, lasagna, spaghetti bolognaise
Vegetarian dishes using lentils and beans (good for constipation)
Milk puddings, stewed or pureed fruit, egg custard, milk jelly and yogurt

If your child requires a pureed diet, make the food look appetizing and give lots of variety.

Use colorful foods e.g., carrots, baked beans, and peas, puree each item separately. To save time, make in bulk, freeze in ice cube containers and just thaw enough for individual meals.

Puree the family meal. Lasagna, spaghetti bolognaise, casserole can all be pureed, and will taste more interesting than plain meat and boiled potato. It will also make the child feel a part of the family if he is eating the same food as everybody else.

Use soup, milk and sauces as the liquid to puree foods. If water is used it will dilute the mal, making taste bland and also reducing the energy content

Show your child the food before it it’s liquidated, so that he can see what he is eating.

The thermomix 3300 is an excellent liquidiser which heats and liquidates at the same time

It is available from:
The Barbel Marketing Co.
Stanton Old hall, Stanton-in-Peak,
Matlock, Derbyshire.
Telephone number: Matlock (0629) 733632

Financial assistance to purchase the thermomix may be available from the DHSS if you are receiving income support or family credit. Ask your social worker if you are eligible.

Constipation

Include plenty of cereal fiber in the diet. Use wholegrain breakfast cereals, such as weetabix, shreddies, bran flakes, wholemeal bread, wholegrain biscuits, such as digestive, brown rice, wholemeal spaghetti and wholemeal flour for cooking (or at least a mixture of half whoelmeal, half white).

Give plenty of fruit and vegetables. Prunes and figs are particularly affective

Drink plenty of fluid.

Avoid sieving food to remove lumps as this will remove the fiber (pureed foods retain their fiber content).

Give distinct meals snacks and avoid continuous snacking throughout the day. This will help to create a strong desire to pass motions.

Try to establish a daily routine, which allows for going to the toilet at a set time.

Despite all your efforts your child may still require laxatives. If this is the case it is still important to include fiber in the diet, as this will minimize the amount of laxative required.

Anemia
Anemia is a common problem in children with EB. Providing a diet rich in iron will help to reduce the likelihood of anemia developing.

Include red meat as often as possible. If your child has difficulties chewing try minced meat, sausages and beefburgers.

Give liver, kidney or black pudding at least once a week. Disguise it if necessary by mixing together with minced meat.

Try liver pate spread on bread or toast.

Haricot beans, lentils, kidney beans and other pulses are all good sources of iron and also very cheap. Many are available in tins and do not need soaking overnight. Mix into casseroles and soups. Baked beans are good on their own or with bread/toast.

Other good sources of iron include bread, fortified breakfast cereals, dark green vegetables, dried fruit, egg yolk, cocoa and chocolate.

Some children with EB show have a good iron intake still develop anemia and require iron supplements. Do not feel you have failed if this is the case with your child.

Tooth decay
Sugar and sweets will contribute to dental caries if given in excessive amounts. However, sugar is a high-energy food useful to increase the energy intake, without increasing bulk.

Keep sweets and sugar to mealtimes where the presence of other foods will act as a buffer and reduce the bad effects of the sugar.

Give chocolate in preference to boiled or chewy sweets. Follow with a glass of milk or water to help rinse the mouth.

For snacks, give cheese, crisps, bread or plain biscuits.

Make sure your child has fluoride supplements if the local water is not fluoridated. Follow the advice given by the dentist about oral hygiene.

How to provide extra nutrients for a young child with Epidermolysis Bullosa

Sample menu

Breakfast
Cereal – Choose high fiber cereal sprinkled with sugar, use fortified milk.
Toast – use wholemeal bread, butter liberally while still warm and add jam, honey or peanut butter.
Milk – Use gold top milk fortified with skimmed powder and milk shake flavor.

Lunch
Shepherds pie – add milk, butter and cheese to potato.
Mix liver and lentils with minced beef
Cauliflower – serve with white sauce.
Rice pudding – add cream
Drink – give sweetened fruit juice

Mid morning and afternoon snack
Milk – give high energy milk
Biscuits – choose a digestive biscuit spread with butter and cheese spread.

Dinner
Baked beans on toast – add grated cheese and knobs of butter.
Use wholemeal bread and spread thickly with butter whilst still warm.
Yogurt – add cream and chop in fresh fruit.
Bedtime drink – Make with fortified milk and flavor with horlicks.

Glossary of Nutritional Supplements

Sources of Carbohydrate, which may be added to food and drinks to increase the energy content. Caloreen – Roussel
Maxijul – S.H.S.
Polycal – cow and gate
Polycose – Abbott

Sources of fat, which may be added to food and drinks to increase the energy content.
Calogen – S.H.S.

Source of carbohydrate and fat, which may be added to food and drinks to increase the energy content.
Duocal – S.H.S.

High-energy drinks which can be used as meal replacements or as supplements to normal meals.
Build up – Nestle
Complan – Crookes Healthcare

Enrich
Osmolite – Abbott
Pediasure

Fortimel – Cow and Gate
Fortisip
Fresubin – Fresenius

Liquisorb – Merck

Some of these products are available on prescription. Ask your dietitian which would be appropriate for your child