Sickle Cell Disease in Children: Care Instructions

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Your Care Instructions

Sickled and normal red blood cells

Sickle cell disease turns normal, round red blood cells into misshaped cells that look like sickles or crescent moons. The sickle-shaped 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 bacterial 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 bacterial 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 or nurse call line 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 or nurse call line if you think your child is having a problem with his or her 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, enough so that the urine is light yellow or clear like water.
  • 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 examinations. Sickle cell disease can cause vision problems.
  • Have your child wear medical alert jewellery that says that he or she has sickle cell disease.
  • Avoid colds and flu. Get your child a flu shot every fall. If he or she must be around people with colds or flu, teach your child to wash his or her hands often.
  • 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 3 or 4 shots. Your doctor can tell you if your child needs another shot.

When should you call for help?

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

  • Your child passes out (loses consciousness).
  • Your child is in severe pain that is not helped by pain medicines.

Call your doctor or nurse call line now or seek immediate medical care if:

  • Your child has these signs of acute chest syndrome, a problem caused by sickle cell disease:
    • Cough.
    • Chest pain.
    • Fever.
    • Shortness of breath.
  • Your child has vision problems.
  • Your child has severe belly pain.
  • Your child has a severe headache.
  • Your child has a fever.
  • Your child has less urine than normal or no urine.
  • Your child has vomiting or diarrhea that does not go away after 2 hours.
  • Your child is dizzy or light-headed, or feels like he or she may faint.
  • Your child has sudden numbness or tingling in the hands, feet, fingers, or toes (even if it goes away).
  • Your child suddenly has poor balance and coordination when walking (even if it goes away).
  • Your child has an erection that lasts more than 2 to 3 hours or is extremely painful.

Watch closely for changes in your child's health, and be sure to contact your doctor or nurse call line if you have any problems.

Where can you learn more?

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Current as of: October 13, 2016