Food List put together by Melanie and Silvia

 

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 coolwhip **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 **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 Toasteds 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 noodeloos, 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	Cassie's  favorite foods - 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	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), porkchops 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 (banna or Choc.) Rice kripies treats Stuffing Turkey Bake beans Drinking jello or eating it Hot Choc. French Toast Mac & cheese w/ tuna (velveta) 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 Brocili & cheese Boston Market Meals & Stouffers (Frozen) Roast Beef (tender in crockpot w/ gravy) Mashed Potatoes (Real Thing) Milk Shakes (Strawberry) Shrimp & Fish (Fresh from Morehead City, NC) Hungry Man's Turkey & Dressing Muffins (blueberry or bananna)

Bruce's Tender Steak Recipe - Adult w/RDEB

For all of us with difficulty eating meats (Ribeye, 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.

Did we forget to mention Pediasure?? Most of our kids live on that!!!!

If you want to share a list of your or your child favorite foods, please email us or fill out the form below:

Your email address:
Name, age, and form of EB of the patient
List of Favorite Foods:

Helpful Nutrition Links

http://www.menudirect.com/consistencymod/constmodfd_home.htm
pureed frozen meals for people with swallowing disorders

http://www.vh.org/Patients/IHB/Peds/Diet/CalorieBoosters.html
Ideas for boosting calories in foods

http://www.challengenet.com/~g-tube/index.html
Gtube information and FAQ

http://www.pediasure.com/html/unifiedsite.cfm
Ross Labs, makers of Pediasure

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