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.