Sickle Cell Disease in Children: Care Instructions

Overview

Sickle cell disease turns normal, round red blood cells into abnormally curved cells that look like sickles or crescent moons. These cells can get stuck in blood vessels, blocking blood flow and causing severe pain. The sickle-shaped cells also can harm organs, muscles, and bones. It is a lifelong condition that causes anemia and puts your child at risk for infections. Sickle cell disease is passed down in families. Your doctor also may recommend that other family members get tested for sickle cell disease.

Your doctor may treat your child with medicines. Some children get blood transfusions or a bone marrow transplant. Managing pain and preventing infections are important parts of your child's treatment.

Follow-up care is a key part of your child's treatment and safety. Be sure to make and go to all appointments, and call your doctor if your child is having problems. It's also a good idea to know your child's test results and keep a list of the medicines your child takes.

How can you care for your child at home?

• Have your child take medicines exactly as prescribed. Call your doctor if you think your child is having a problem with a medicine.
• Give pain medicines exactly as directed.
  • If the doctor gave your child a prescription medicine for pain, give it as prescribed.
  • If your child is not taking a prescription pain medicine, ask your doctor if your child can take an over-the-counter medicine.
• Try to help ease pain by distracting your child. Have your child learn to use guided imagery, deep breathing, and relaxation exercises. A pain specialist can teach you and your child pain management skills.
• Dress your child warmly in cold weather. The cold and windy weather can lead to severe pain.
• Give your child lots of fluids.
• Keep your child away from smoke. Do not smoke or let anyone else smoke around your child or in your house.
• Make sure your child gets plenty of sleep.
• Make sure your child gets regular eye exams. Sickle cell disease can cause vision problems.
• Have your child wear medical alert jewelry that says that your child has sickle cell disease. You can buy this at most drugstores.
• Help your child avoid infections such as COVID-19, colds, and the flu. Remind your child to wash their hands often. Get your child a flu shot every year. Stay up to date on your child's COVID-19 vaccinations.
• Make sure your child gets a pneumococcal vaccine shot. This is a standard vaccine given to children starting at 2 months of age for a total of 4 shots. Your doctor can tell you if your child needs another shot.
• Make sure that your child takes antibiotics regularly until age 5. This is done to prevent infections.

When should you call for help?

Call 911 anytime you think your child may need emergency care. For example, call if:

• Your child has symptoms of a stroke. These may include:
  • Sudden numbness, tingling, weakness, or loss of movement in the face, arm, or leg, especially on only one side of the body.
  • Sudden vision changes.
  • Sudden trouble speaking.
  • Sudden confusion or trouble understanding simple statements.
  • Sudden problems with walking or balance.
  • A sudden, severe headache that is different from past headaches.
• Your child is in severe pain that can't be relieved with their usual prescription pain medicines or other pain-relief methods.
• Your child has severe belly pain or a sudden increase in the size of their spleen. (Learn from your doctor how to feel your child's spleen to check its size.)
• Your child has a persistent erection of the penis (priapism) that lasts more than 2 or 3 hours or that is extremely painful.
• Your child has symptoms of a heart attack. These may include:
  • Chest pain or pressure, or a strange feeling in the chest.
  • Sweating.
  • Shortness of breath.
  • Nausea or vomiting.
  • Pain, pressure, or a strange feeling in the back, neck, jaw, or upper belly or in one or both shoulders or arms.
  • Lightheadedness or sudden weakness.
  • A fast or irregular heartbeat.

NOTE: If your child is having symptoms of a heart attack, the 911 operator may tell you to have your child chew 1 adult-strength or 2 to 4 low-dose aspirin. Wait for an ambulance. Do not try to drive yourself.

Call your doctor now or seek immediate medical care if:

• Your child has a fever.
• Your child has an open sore (ulcer) on the leg.
• Your child has problems with urination.

Make a management plan with your child’s doctor that includes where and when to get treatment in case of a sickle cell emergency.

Watch closely for changes in your child's health, and be sure to contact your doctor if your child is having any problems.