UCSD Cystine Determination Laboratory

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FEEDING ISSUES IN CYSTINOSIS

by Annie Durning-Canty, M.S., R.D.
General Clinical Research Center
UCSD Medical Center

As Presented During the 1997 Cystinosis Conference in San Diego.

What Makes a Meal?
- protein
- bread, cereal or grain
- fruit or vegetable
- dairy

Offer a variety of food at mealtime. A meal could be hamburgers, salad and milk; roast beef, mashed potatoes, vegetables, bread and milk; stirfried chicken with vegetables, rice and milk; spaghetti with meat sauce, french break tossed salad, and milk; burritos with cheese, chopped lettuce, and tomatoes and milk. Even hot dogs, potato chips, carrot sticks and milk make a nutritious meal!

Refer to "Recommended Daily Pattern of Food Selection" below for nutritious patterns of eating for different age groups. Remember serving sizes for children are approximately 1/3 the size of an adult serving.

RECOMMENDED DAILY PATTERN OF FOOD SELECTION
  Child
2 - 10
Adolescent
Teenager
Adult
Milk2 cups4 cups2 cups
Meat, fish, poultry, cooked dried beans, nuts2 - 3 oz4 - 5 oz4 - 5 oz
Breads and cereals4 serv.4 serv.4 serv.
Fruits and vegetables4 serv.4 serv.4 serv.

Easy Entrees

Assemble Yourself:Condiments:
- Tacos- Salt, pepper
- Burritos- Ketchup, mustard
- Pizza- Relish, pickles, olives
- Pasta or Salad BarSalsa
- Deli Sandwiches  

Anytime Meals

FOODFOOD GROUP
 MeatMilkFruits/VegetablesBread
Taco****
Pizza****
Hot Dog*  *
   w/cheese** *
Chili* **

Food Suggestions for Adding Calories

MILK/DAIRY:     PROTEIN:
Full fat cheeses     Hot Dogs
Half n Half     Luncheon meats
Full fat ice cream     Sausages/bacon
Milkshakes      Turkey or chicken thigh or leg, with skin
Whole Milk     Fried chicken/fish
Yogurt     Nuts, nut butters
Pudding     Eggs, omelettes

FRUITS/
VEGETABLES
     BREADS/
CEREALS:
Avocado     Bagels w/cream cheese or jelly
Banana     Chips, popcorn
Olives     Cookies
Mashed Potatoes w/gravy     Crackers
Creamed corn     Flour tortillas
Cooked vegetables w/margarine     Croissants, pastries
French fries, onion rings     Cakes, pies
Fruit smoothies       

SUPPLEMENTS:   OILS, SAUCES:
Pediasure   Margarines
Ensure Plus, Sustacal   Canola, Olive oil
Scandishake   Cream sauces
Instant Breakfast   Gravies
Nonfat dry milk powder   Salad dressing
Polycose   Mayonnaise

COMBINATION FOODS:
Pizza, tacos, burritos, spaghetti w/meatballs, macaroni and cheese, fettucine alfredo, fast food entrees, soups, stews, quesadillas (flour tortillas w/melted cheese), grilled cheese sandwich, baked potato with melted cheese, waffles, pancakes.

Problems with Swallowing

- Swallowing evaluation
- Modifying food consistency
- Positioning
- Rate of feeding
- Swallowing techniques

Progression of Food Textures

A. Pureed, Strained, Blenderized

B. Semi-lumpy (no discreet lumps)

C. Solids that form easity into mass

D. Foods that are difficult to tolerate

E. To thicken foods:

Division of Feeding Responsibility

- Parents are responsible for what is presented to eat and the manner in which it is presented.
- Children are responsible for how much and even whether they eat.

Parents are responsible for what is presented to eat and the manner in which it is presented.

  • Selecting and buying food
  • Making and presenting meals
  • Regulating timing of meals and snacks
  • Presenting foodin a form a child can handle
  • Allowing eating methods a child can master
  • Making family mealtimes pleasant
  • Helping the child to participate in family meals
  • Maintaining standards of behavior at the table

    Parent are NOT responsible for

  • How much a child eats
  • Whether the child eats
    from How To Get Your Kid To Eat... But Not Too Much, Ellyn Satter

  • Summary

  • Feeding Concerns
  •   
  • Feeding Strategies
  • - Food Preferences  - Promote Balance in Food Choices
    - Food Intake  - Optimize Food Intake
       - Establish a Positive Feeding Relationship

    P- Be a Role Model
         Provide Variety - food pyramid, Easy Entrees
         Tolerate Food Jags
         Anytime Meals

    O - Scheduling Meals and Snacks
         Swallowing Problems
         Adding Calories

    E - Division of Responsibility in Feeding