UCSD Cystine Determination Laboratory

Home» Cystinosis Info»Dietary Info 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
Milk	2 cups	4 cups	2 cups
Meat, fish, poultry, cooked dried beans, nuts	2 - 3 oz	4 - 5 oz	4 - 5 oz
Breads and cereals	4 serv.	4 serv.	4 serv.
Fruits and vegetables	4 serv.	4 serv.	4 serv.

Easy Entrees

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

Anytime Meals

FOOD	FOOD GROUP
	Meat	Milk	Fruits/Vegetables	Bread
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

Yogurt
Ice Cream/sherbet
Pudding
Applesauce
Cream of wheat cereal
Whipped potatoes
Bran soaked in milk
Thick milk shates
Strained fruit thinned with small amount juice/water
Custard thinned with small amount milk

B. Semi-lumpy (no discreet lumps)

Mashed bananas
Mashed potato
Small curd cottage
Cooked winter squash
Mashed avocado
Oatmeal (cooked)
Soft scrambled eggs

C. Solids that form easity into mass

soft macaroni and cheese	partially cooked vegetables	steamed apples
chicken	banana, not mashed	french fries
soft bread	pancakes, waffles
fish	french toast

D. Foods that are difficult to tolerate

- more than one consistency: vegetable soup, fruited jello

- crumbly foods: dry hamburger, dry cookies

- foods with outer shell: peas, corn, lima beans, grapes, apples, hotdogs

- thin liquids: travel quickly down throat. Jello

E. To thicken foods:

Wheat germ		Powdered milk
Cream of wheat cereal (powdered)		Thick-It
Mashed potatoes		Avocado or instant breakfast = calories
Corn starch		Gravy
Unflavored gelatin		Ground graham crackers

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

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