Caring for a Child with Sickle Cell Disease

March 25, 2022
Janelle Thomas MSN, RN
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Sickle cell disease is a general term for a group of blood disorders, including sickle cell anemia, that affects the body’s ability to create healthy red blood cells. The disease gets its name because the red blood cells of people affected tend to have a sickle shape compared to the normal round shape. Sickle cell diseases are genetically inherited, with some form of the defect needing to be present in both parents of a child for symptoms to develop.

Usually identified before birth, children with sickle cell disease can experience fatigue, chronic pain, and other debilitating symptoms early in life. Although symptoms vary, babies and children with this condition have substantial, ongoing care needs.

If you’re a parent of a child with sickle cell disease, learning more about effective care and treatment measures can be a critical step for your little one’s long-term wellness.

Understanding Sickle Cell Disease

Sickle cell disease is passed from parent to child in the same way that hair or eye color is passed on. If both parents have a form of sickle cell disease, such as sickle cell anemia, there is a high likelihood of it developing in their child.

When one parent has sickle cell disease and the other does not, it results in sickle cell trait, which is when the sickle gene is inherited and can be passed on. If both parents have the sickle cell trait, there is still an increased risk of a serious sickle cell disease.

In sickle cell disease, the genes for making hemoglobin, the compound in the blood that helps carry oxygen, will contain a defect that negatively impacts its production. Sickle cells do not live as long, and the altered shape can cause blockages in the blood vessels. This contributes to the symptoms that children with sickle cell disease experience, including anemia, pain episodes, high risk of infection, fever, and vision problems.

Treatment for Sickle Cell Disease

The main goal of most treatment plans for sickle cell disease is to manage pain, improve functioning, and reduce the risk of long-term complications. This usually includes medications that help reduce the frequency of painful episodes, or pain crises, in children. Pain medication, including prescription narcotics, can help to reduce the severity of a pain crisis when it does occur.

Another common treatment measure is an antibiotic regimen to treat infections or reduce the risk of infection. Blood transfusions may also be attempted, as they can increase the number of healthy red blood cells that are present.

There are also a number of newer treatments for sickle cell disease. One medication is called Hydroxyurea, which helps to make sickle cells less sticky and may reduce complications such as pain crises. Another treatment is a stem cell transplant, which uses bone marrow from a genetically similar donor who does not have sickle cell disease. Although a successful stem cell transplant can significantly reduce the severity of sickle cell disease, there is a serious risk of rejection and other complications.

Tips for Sickle Cell Disease Child Care

Although it can be a very challenging condition with long-term care needs, parents of children with sickle cell disease can take steps to help their child successfully manage symptoms. This includes:

  • Providing a healthy, nutrient-rich diet for your child
  • Making sure your child drinks plenty of water
  • Making sure your child gets plenty of rest and sleep
  • Attending all physician appointments and keeping your pediatrician informed of any new concerns or symptoms
  • Following up with any specialists as recommended to screen for complications
  • Minimizing extremely high or low temperatures, which can trigger a pain episode
  • Managing your child’s mental health and stress levels
  • Ensuring your child takes any recommended prescription medications as directed
  • Providing supplements such as folic acid if indicated by a pediatrician or specialist, which can help the body make more red blood cells

Families often struggle to balance these care needs with other lifestyle factors such as work, school, siblings, and other family obligations. Pediatric home health services can help achieve treatment goals and promote the long-term health of children with sickle cell anemia. A qualified nurse can help manage medications, provide accompaniment to appointments, and facilitate any other at-home care needs.

Contact Care Options for Kids for Home Health Care in Florida

It can be hard to balance your time between work, home, and caring for a child. That’s why our team of skilled professionals at Care Options for Kids is here to help. We have been enforcing precautionary measures and following the Centers For Disease Control (CDC) guidelines for COVID-19 to ensure the safety and health of our clients and employees.

Our home health care services offer support in the comfort of your home. We refer loving and competent nurses to provide customized care for families — from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.

If you or a loved one are considering Pediatric Home Health Care Services in Florida, contact the caring staff at Care Options for Kids. Call today at (888) 592-5855.