Managing Sickle Cell Disease in Children: Resources for Parents
Proactively managing sickle cell disease in children can help kids with sickle cell disease have a better quality of life. In this post, we’ll look at what sickle cell disease is, who it affects, and how to create healthy habits with your child.
What is Sickle Cell Disease?
Sickle cell disease is a chronic illness in which hemoglobin is abnormal. Hemoglobin is the protein found in red blood cells that carries oxygen. Normal red blood cells are disk-shaped and flexible to move easily through blood vessels. In Sickle Cell Disease, the abnormal hemoglobin causes red blood cells to be rigid and shaped like a sickle or a crescent. Sickle cells can get stuck and block blood flow, which can cause pain, infections, and organ damage.
What Causes Sickle Cell Disease?
Sickle cell disease is a genetic condition which is inherited from certain hemoglobin genes of the parents.
- A person with sickle cell disease inherits a sickle cell gene from both parents.
- A person with sickle cell trait inherits a sickle cell gene from one parent and a normal hemoglobin gene from the other parent. While most people with sickle cell trait do not experience symptoms, they can pass the gene to their children.
- A person with a rare type of sickle disease inherits a sickle cell gene from one parent and a different abnormal gene – hemoglobin C trait or beta thalassemia trait – from the other parent.
Major Types of Sickle Cell Disease
The most common form of sickle cell disease is Hemoglobin SS. Other major types of sickle cell disease include:
- Hemoglobin SC,
- Sickle Beta Zero Thalassemia, and
- Sickle Beta Plus Thalassemia.
Hemoglobin SS and Sickle Beta Zero Thalassemia are the most severe forms and may be referred to as Sickle Cell Anemia. Hemoglobin SC is considered moderate, and Sickle Beta Plus Thalassemia is generally considered the mildest form of sickle cell disease.
Who is Affected by Sickle Cell Disease?
An estimated 90,000-100,000 people in the United States are affected by sickle cell anemia and millions worldwide.
Sickle cell disease is more common in certain ethnic groups, including:
- People of African descent, including African-Americans (1 in 12 carries a sickle cell gene)
- Hispanic-Americans from Central and South America
- People of Middle Eastern, Asian, Indian, and Mediterranean descent
Early diagnosis of sickle cell disease is crucial because symptoms can start as early as four months of age. All newborns in the United States are now tested SCD, and it can be identified before birth by testing a sample of amniotic fluid or tissue from the placenta.
What is a Sickle Cell Crisis
When sickle cells get caught in blood vessels and obstruct the flow of blood, it can cause a painful condition known as a sickle cell crisis. Sometimes pain can be managed at home, but a person experiencing severe pain may require treatment in a hospital.
Pain from a sickle cell crisis may occur in any part of the body but tends to be felt in the chest, arms, legs, fingers, and toes.
Common Sickle Cell Crisis Triggers:
- Sudden changes in temperature
- Excessive exercise
- High altitudes
- Medical conditions, such as diabetes
Sickle Cell Disease in Children: Helping Kids Form Healthy Habits
Proactively managing sickle cell disease in children starts with developing a treatment plan with your child’s doctor. Following a treatment plan, learning how to avoid triggers, and creating healthy nutrition and lifestyle habits can help kids with sickle cell disease have a better quality of life.
Treatment for Sickle Cell Disease in Children
Specific treatment for sickle cell disease and related complications should be determined by your child’s doctor or pediatric hematologist, and may be based on:
- Your child’s age
- Your child’s overall health
- Your child’s medical history
- The severity of the disease
- Your child’s tolerance of specific medications and procedures
Sickle cell disease can lead to many complications such as acute chest syndrome, acute and chronic bone complications. Sickle cell disease in children may result in a higher risk of stroke. Doctors can test to determine a child’s risk of stroke at as young as two years of age. Regular blood transfusions can decrease the risk of stroke.
Taking the following steps to stay healthy may help you avoid complications with sickle cell disease in children:
- Focus on nutrition as a family to create lasting habits. Creating healthy habits for the whole family will also help your child not to feel singled out.
- Choose a diet that focuses on a variety of colorful fruits and vegetables, as well as whole grains.
- Choose calcium-rich foods such as milk, yogurt, and cheese, leafy greens and foods fortified with calcium.
- Drink plenty of water to avoid dehydration. Dehydration can increase the risk of a sickle cell crisis.
- Avoid drinks and foods that are high in sugar.
- People with sickle cell disease are at high risk for low levels of vitamin D. Vitamin D is found in certain foods like fish, egg yolks, mushrooms and foods fortified with vitamin D. Vitamin D is also produced through sunlight. However, you want to be careful to avoid sunburn. You may talk to your child’s doctor about vitamin D testing and possible supplementation.
- Bone marrow needs folic acid and other vitamins to make new red blood cells. Leafy green vegetables, legumes, citrus fruits, and eggs are high in folate, but your child’s doctor may recommend a folic acid supplement.
- Avoid temperature extremes. Exposure to extreme heat or cold may increase a child’s risk of a sickle cell crisis.
- Exercise regularly as directed by your child’s doctor. Strenuous exercise may not be appropriate for sickle cell disease in children. Talk with your child’s doctor about how much exercise and what type of physical activity is right for them.
- Use over-the-counter (OTC) medications with caution and at the direction of your child’s doctor. OTC pain medications should be used sparingly because of the possible effect on kidneys.
- Children with sickle cell disease may have a hard time coping with their condition because of delayed puberty. They may also feel stress and anxiety about having sudden pain episodes. Finding a support group for yourself and your child can help them find ways to cope by sharing with peers. Ask your child’s doctor for a list of groups in your area.
- Be aware of signs of stress and help your child find healthy ways to cope with and reduce stress.
- Stay current with all doctors appointments and prescribed medications and treatments. Talk to your child’s doctor about any concerns or symptoms.
*Always be sure to discuss supplementation, OTC medications and changes to diet and exercise routines with your child’s doctor prior to starting a regimen and when necessary, obtain written consent.
Additional Resources for Parents and Guardians
Tips for Supporting Students with Sickle Cell Disease Centers for Disease Control and Prevention
Sickle Cell Disease Special Needs Factsheet Kids Health
Support Groups for Sickle Cell Disease American Sickle Cell Anemia Association
Resource Library for Helpful Tools on Sickle Cell Disease Sickle Cell Disease Coalition
What tips have you found helpful in managing your child’s sickle cell disease? We would love to hear from you! Please share your experience with us in the comments.
MAKING A DIFFERENCE FOR FAMILIES IMPACTED BY CHILDHOOD CHRONIC ILLNESS
Since 2001, CoachArt has matched volunteer coaches with students for one-on-one or group lessons in arts and athletics. Our vision is that one day every family impacted by chronic illness will be connected to a community of support and an opportunity to learn and grow together.
CoachArt offers free art and athletic lessons to chronically ill children and their siblings between the ages of 5-18 in Los Angeles, the San Francisco Bay Area, and San Diego. If your child has been diagnosed with a chronic condition, we invite you to fill out a student eligibility form or get in touch to learn if CoachArt is right for your child.
Ways to Help
Do you have an artistic or athletic skill you would like to share with a child impacted by chronic illness? Become a CoachArt Volunteer.