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Parent and Caregiver Handbook for Sickle Cell

Appendix: Nutrition

Introduction

A healthy diet is important for children and adolescents with sickle cell disease for many reasons. Children will feel better, have more energy, and may have less pain if they are eating healthy, getting some exercise, and, drinking plenty of fluids. 

Children with sickle cell disease may also need more of certain nutrients found in food. However, sometimes they might not feel like eating because they are having pain. They may be taking medications for pain that can lead to constipation and reduce their appetite. Constipation is explained more below.

In this appendix we will review some of the most important nutrients for children with sickle cell disease. We also offer tips for creating a healthy diet for your child. 

Picky eaters and appetite

Many young children with sickle cell disease are picky eaters, have a poor appetite, or limited interest in food. Almost every child has some food dislikes. These foods should not be referred to as foods they “don’t like.” Instead call them foods that they “haven’t learned to eat yet.”

A nutrition expert can provide suggestions for how to encourage a picky child to try new foods (also see Table on Helpful Hints). Keep in mind, it is the parents’ responsibility to provide food choice at each meal. It is the child’s responsibility to decide what and how much to eat.

Some children may also have cravings for non-food items. Eating or craving non-food substances is called “pica.” Pica is common in young children with sickle cell disease. The most commonly eaten non-foods are paper, cardboard, fabric, dirt, foam, and baby powder.

Eating small amounts of non-foods can be harmless. It will reduce appetite, however. And it can lead to more serious medical problems including tooth decay, constipation, intestinal blockage, and poor growth.

There are many theories why children may want to eat these things. One reason is that they could have a nutrient deficiency. If your child tries to eat non-food items on a regular basis, do not be embarrassed, but do talk to your doctor. If they have a nutritional deficiency, it can be corrected. If your child has very limited food intake, your doctor might recommend meal enhancements. Meal enhancements include meal shakes in addition to vitamin supplements. 

Fluids and fiber

As was explained in Chapter 3, drinking water is very important for patients with sickle cell disease. Children and adolescents who don’t drink enough water may be tired, dizzy, have headaches, muscle cramps, and become constipated. Constipation is when your child may have a tough time pooping because the poop is hard or dry. Constipation can make your child not feel like eating.

Water is the best drink for all children over 3 years of age. It is recommended that children limit drinking 100% fruit juice and other sugar-sweetened beverages to 1 cup or less per day. Juice drinks have lots of calories and sugar. They do not have a lot of important nutrients or the fiber found in whole fruit. 

Eating enough fiber is important to reduce constipation. It can also lower the chance you child will suffer from obesity or diabetes. Fiber is found in whole grain bread, nuts, fruit, and vegetables. How much fiber your child should get is dependent on their age (see the table below).

How much fluid your child should drink is also dependent on your child’s age. It will increase when they have pain, a fever, are more physically active, or when it is hot outside.

How much fiber should your child eat?

Table: Age and recommended fiber

Child’s Age Fiber Recommendation Similar to How Much Bread?
5 year old 10-15 grams fiber/day 2 slices of 100% whole grain bread
10 year old 15-20 grams fiber/day 3 slices of 100% whole grain bread
15 year old 20-25 grams fiber/day 4 slices of 100% whole grain bread

Table: Some foods with fiber

Food Fiber, grams Food Fiber, grams
100% Bran Cereal, ½ cup 12 g Strawberries, 1 cup 3 g
100% whole grain bread, 1 slice 4 to 5 g Beans, ½ cup 4 to 7 g
Raisin Bran Cereal, ½ cup 4 g Sweet potato, 1 medium 4 g
Apple with skin, 1 medium 3 g Spinach, ½ cup cooked 2 g

Choosing healthy foods

You can encourage your child to be healthy by eating a variety of foods. Encourage your child to “eat around the rainbow” (See Figure 1). Healthy foods with many vitamins and minerals important for healthy bodies come in a variety of colors: for example, kale (green), carrots (yellow), beets (red), red cabbage (purple). Each food gets its color from nutrients that are important for healthy bodies.

By eating a variety of foods of different colors throughout the day, your child will get more nutrients. Don’t get confused between foods with naturally vibrant colors (healthy food) and processed foods with color additives (like sugary cereals). These processed foods should not be considered part of the ‘healthy rainbow.’

Healthy foods come in lots of colors

See the Eating the Rainbow website for some healthy foods in a variety of colors.

Planning healthy meals

You can help your child eat a variety of foods by planning ahead. One guide that is available for meal planning is called “MyPlate.” It is picture of a plate divided into portions, about ¼ for protein, ¼ for grains/bread and ½ of the plate set aside for fruits and vegetables.

An online interactive website shows more about what foods fall into each category, how much of each food category your child should eat, budget-friendly food ideas, recipes, and suggestions for increasing variety by ‘making every bite count.’

“My Plate” for meal planning

See the MyPlate website, an online interactive website where you can learn more about what foods fall into each category, portion size, budget friendly food ideas, recipes, and suggestions for increasing nutrient density ‘making every bite count.’

Food, inflammation, and pain

Every day pain can lead to inflammation in the body. Inflammation happens when your body releases chemicals in response to pain or injury. It is the bodies’ way of healing damaged tissue. However, every day inflammation can be harmful to the body.

Eating a healthy diet is one of the best ways to reduce inflammation in the body. It can possibly decrease some of the pain your child feels. Specific foods that are anti-inflammatory are listed below. Including these foods in your child’s diet can be helpful.

Table: Food categories and examples of each

Food Category Specific Examples of Foods to Include
Fruits berries, apples, oranges, cherries
Vegetables spinach, broccoli, collard greens, cauliflower, carrots, beets, asparagus, sweet potatoes, peppers
Herbs & Spices parsley, ginger, garlic, cinnamon, turmeric, basil, saffron, rosemary
Seafood salmon, trout, clams, oysters, mussels
Nuts and Seeds flax seeds, pumpkin seeds, sunflower seeds, walnuts
Whole Grains quinoa, oats, buckwheat
Beans & Legumes chickpeas, lentils, black beans


There are some foods that are best to eat in limited amounts. They are “once in a while” foods. They might contribute to more inflammation. You don’t have to completely cut these foods from your child’s diet, but it is best to limit them as much as possible.

Table: “Once in a while” foods

Food Category Examples of Foods to Limit
High Sugar Foods & Drinks soda, candy, sugar cereals
Fast Food french fries, milkshakes, fried chicken, chicken nuggets
Refined grains white bread, chewy granola bars
Processed meats lunch meats, bacon, hot dogs
Foods with lots of salt canned soups, chips

Specific nutrients that are important in sickle cell disease

Doctors have found that patients with sickle cell disease may not get enough of some important nutrients found in food. These include folate, calcium, magnesium, zinc, vitamin D and vitamin E. For most children, eating a healthy diet that includes a variety of foods will be enough. However, your doctor will do some blood tests on a regular basis to be sure that your child has enough nutrients to stay healthy. They may recommend your child take supplements.

Folate

Folate is very important for healthy red blood cells. People with sickle cell disease break down red blood cells too quickly. They need more folate. Because folate is so important, most children with sickle cell disease will be given a 1 mg (1000 µg) folate supplement to take every day. Folate is also found in a variety of foods. The richest sources are dark green leafy vegetables, beans, and peas. In the U.S., folate is also in fortified breakfast cereals and bread.

Table: Some foods with lots of folate

Food Source, Serving Quantity Folate, µg
Spinach, boiled ½ cup 130
Breakfast cereals 100
Green peas, boiled ½ cup 50
Bread, whole wheat 1 slice 50
Kidney beans, ½ cup 45
Orange juice, ¾ cup 35
Banana, 1 medium 25

Source: adapted from United States Department of Agriculture, Food Data Central, 2019

Calcium

Calcium is important for building strong healthy bones in children and teenagers. Children with sickle cell disease sometime have weak bones. It is important they get enough calcium from their food. Calcium is found in milk, yogurt, and cheese. If your child gets stomachaches from drinking milk or eating dairy products, non-dairy foods that have a lot of calcium include dark green leafy vegetables, tofu, beans, corn tortillas, and kale. Depending on their age, your child needs between 1000 to 1300 mg of calcium each day.

Table: Some foods with lots of calcium

Food Source, Serving Quantity Calcium, mg
Yogurt, plain 1 cup 415
Cow’s milk, whole fat, 1 cup 275
Tofu, ½ cup 250
Soybeans, cooked ½ cup 130
Kale, cooked 1 cup 95
Pinto beans, canned ½ cup 55

Source: adapted from United States Department of Agriculture, Food Data Central, 2019

Magnesium

Magnesium may be important for reducing painful episodes in patients with sickle cell disease. Magnesium is found in a wide variety of foods including seeds, nuts, dark green leafy vegetables, legumes, dairy, nuts, whole grains, and even chocolate. The amount of magnesium your child needs will depend on their age: about 300 to 400 mg of magnesium each day.

Table: Some foods with lots of magnesium

Food Source, Serving Quantity Magnesium, mg
Almonds, handful 80
Spinach, ½ cup cooked 80
Soymilk, 1 cup 60
Black beans, ½ cup 60
Yogurt, 1 cup 40
Dark chocolate, 1" square 40
Milk, whole fat, 1 cup 25
Whole Wheat Bread, 1 slice 25

Source: adapted from United States Department of Agriculture, Food Data Central, 2019

Zinc

Zinc has been shown to decrease pain, infection, leg ulcers, and improve growth. It also may decrease the amount of time a person with sickle cell disease stays in the hospital with pain. Children with sickle cell disease may need more zinc than children without sickle cell disease.

The richest sources of zinc are meat, fish, and seafood. Other sources of zinc in food include beans, eggs, legumes, dairy products, and whole grains. Breakfast cereals in the U.S. are fortified with zinc. They may be a good source of zinc for young children. The amount of zinc your child needs will depend on their age: about 5 to 11 mg of zinc each day.

Table: Some foods with lots of zinc

Food Source, Serving Quantity Zinc, mg
Beef, roasted 3 oz 3.8
Turkey breast, 3 oz 1.5
Lentils, cooked ½ cup 1.3
Cheese, Cheddar 1 slice 1.5
Yogurt, 1 cup 1.0
Whole wheat bread, 1 slice 0.6

Source: adapted from United States Department of Agriculture, Food Data Central, 2019

Vitamin D

Vitamin D is important for bone health, immune function, and reducing pain in people with sickle cell disease.

Vitamin D is found in food. It can also made by the body when the skin is exposed to the sun. People may have low levels of vitamin D in their blood if they have naturally dark skin, if they don’t spend a lot of time outside in the sun, or if they don't eat many foods that have vitamin D.

The foods with the most amount of natural vitamin D are fish (sardines, salmon, swordfish), fish oils (cod liver oil), mushrooms, and egg yolks. In the U.S., milk, breakfast cereal, yogurt, and orange juice are also good sources of vitamin D.

The amount of vitamin D your child needs from the foods they eat will depend on how much they make in their skin. Many people with sickle cell disease may have vitamin D deficiency. It will be checked in your child’s blood often. Your doctor may give your child a vitamin D supplement to take if the amount of vitamin D in their blood is low.

Table: Some foods with lots of vitamin D

Food Source, serving quantity Vitamin D, IU
Cod Liver Oil, 1 Tbsp 1300
Salmon, cooked 3 oz 550
Mushrooms, white raw exposed to UV, ½ cup 300
Cow’s Milk, whole fat, 1 cup 120
Egg, 1 large scrambled 40
Tuna fish, canned in water 3 oz 40

Source: adapted from the Vitamin D Fact Sheet for Health Professionals: National Institutes of Health, Office of Dietary Supplements, 2022.

Vitamin E

Vitamins E is important for red blood cells and to reduce inflammation. The more red cells break down, the more the body needs vitamin E. Foods that have a lot of vitamin E include nuts, vegetable oils, and wheat germ. The amount of vitamin E your child needs will depend on their age: about 7 to 15 mg of vitamin E each day.

Table: Some foods with lots of vitamin E

Food Source, Serving Quantity Vitamin E, mg
Wheatgerm oil, 1 Tbsp 20
Almonds, 1 handful 7
Sunflower Oil, 1 Tbsp 6
Hazelnuts, 1 handful
4
Peanut butter, 2 Tbsp
3

Source: adapted from the Vitamin E Fact Sheet for Health Professionals: National Institutes of Health, Office of Dietary Supplements, 2022.

In summary

It can be difficult to find foods your child is willing to eat. Working with your doctors and a nutrition expert can help. They can work with you to find foods your child likes to eat while also taking into account your child’s medical needs. They will also factor in the amount of time you have for meal preparation, your families’ financial resources, as well as personal, cultural, and religious food practices. They will develop an individualized nutrition plan for your child.

A healthy diet is important to help your child grow to their full potential, have strong bones, and limit infections. It may also help avoid some sickle cell related pain. Encouraging healthy eating and physical activity for children and teenagers with sickle cell disease is important for their health now. And it will help them develop good habits they can use as they grow older.

Topics nutritionists or other professionals can discuss with a person with sickle cell disease:

  • Assessing nutritional needs of a patient
  • Advising patients on practical strategies for meal planning and shopping
  • Strategizing around meal planning specifically for sick days
  • Managing eating when feelings tired
  • Ideas for how to encourage picky eaters to try new foods
  • Instruction on how to read nutrition labels at the grocery store
  • Strategies for how to manage stomacheaches from medication
  • Identifying foods with a lot of nutrients and those high in antioxidants
  • Specific assistance with individuals who have specialized dietary needs (for example, vegetarian, vegan, kosher, food allergies, low lactose, gluten free)
  • Choosing an appropriate vitamin / mineral when needed
  • Correcting misinformation about fad diets

A nutritionist or dietitian is a professional, trained in food science, nutrition, and the impact of food on human health. They have received formal training in nutritional science and its application to clinical practice. They may provide evidence-based medical nutrition therapy to patients and tailor counselling strategies to meet patients’ needs. 

In the U.S., nutrition professionals are registered dietitians or registered dietitian nutritionists, licensed by the Academy of Nutrition and Dietetics.

Don’t worry if your child is occasionally a picky eater. It is natural for children to refuse to eat some foods at some times. It is one of the ways they develop independence. It is an issue when they consistently avoid foods, food groups, or add stress to family mealtimes.

Tips for picky eaters

  • Offer many different foods at each meal, especially fruits and vegetables
  • When new foods are offered, be sure there are also familiar foods at the same meal
  • Don’t give up. Children often need to experience a new food a number of times before accepting them
  • Provide regularly scheduled meals and snacks
  • Keep mealtimes constant using the same plates, utensils, and location where the meal is provided
  • Avoid external distractions during the meal, remove phones, ipads, computers, or TVs from where the meal is served
  • Eat together as a family as often as possible
  • Model a healthy diet for the child
  • Avoid using food as a reward to shape behavior

Source: adapted from the Academy of Nutrition and Dietetics, Selective Eaters Nutrition Therapy.

This information is provided courtesy of the University of San Francisco, Benioff Children’s Hospital Oakland Sickle Cell Center.

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