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Discharge Instructions for Sickle Cell Anemia and Sickle Cell Crisis (Pediatric)

Your child has sickle cell anemia. That means the red blood cells are abnormally C-shaped (like a sickle or a half-moon) instead of round. This can cause the sickle blood cells to become trapped in blood vessels and can affect the blood's ability to carry oxygen. Sickle cell anemia runs in families, and commonly affects African Americans. Sickle cell anemia can be controlled with treatments, but the only potential cure is a bone marrow transplant. Your child was born with this condition.

A sickle cell crisis happens when many sickled cells stick together and pile up in the blood vessels. During a sickle cell crisis, your child can have severe pain in the chest, stomach, arms, legs, and in any bone. The crisis can last for hours, or even days, and can happen several times a year. Over time, organ damage can also happen. Here’s what you can do to help your child.

 

What to watch for

Be on the alert for:

  • Any possible signs of infection, such as fever or shortness of breath
  • Swollen, painful, red, or hot hands and feet or a swollen belly
  • Signs of fluid loss (dehydration)
  • Sores (ulcers) on your child's legs. These are caused by poor blood flow and are a sign that your child's sickle cell anemia is not under control. 
  • Yellowing of the eyes or skin.
  • In boys, an erection that doesn’t go away
  • Pain that does not go away with treatment
  • Abnormal speech, weakness in arms or legs, loss of vision, or uneven face that may mean a stroke

 

Treatment

What you can do:

  • Get treatment right away if your child has a fever of 100.4°F (38°C) or higher, pain, infections, illnesses, or other health problems. This includes flu, colds, and skin infections.
  • Call your child’s healthcare provider if you are unsure about how to treat your child. It is very important your child get proper treatment of health problems to avoid complications of sickle cell anemia.
  • During a sickle cell crisis, make sure you continue to give your child his or her pain medicine as prescribed by your child’s healthcare provider. If the pain continues, call your child’s healthcare provider.

 

Home care

Do's and don'ts once home:

  • Encourage your child to get plenty of activity, but not to the point of becoming overly tired. Be sure your child drinks plenty of fluids during activity.
  • Discuss with your child's provider which sports and what type of exercise are appropriate.
  • Encourage your child to drink plenty of liquids, especially during warm weather, in order to avoid dehydration.
  • Dress your child in warm clothes if he or she will be outside during cold weather or will be in air-conditioned buildings during hot weather.
  • Don’t allow your child to swim in cold water.
  • If your child must travel by air, he or she should fly in pressurized aircraft only (most commercial aircrafts are pressurized). Talk to your child’s healthcare provider about extra safety steps if your child must travel in a non-pressurized plane.

 

Follow-up care

Make a follow-up appointment as directed by your healthcare team. 

 

Call 911

Call 911 if your child has any of the following:

  • Fever of 100.4°F (38°C) or higher, or as directed by your child's healthcare provider
  • Difficulty breathing
  • Chest pain
  • Seizure
  • Severe headaches
  • Swelling in the abdomen (belly)
  • Sudden weakness
  • Weakness on one side of the body
  • Loss of feeling and movement
  • A painful erection of the penis lasting more than 4 hours
  • Pallor
  • Sudden vision problems

 

When to call your child's healthcare provider

Call your child's healthcare provider right away if your child has any of the following:

  • Swollen hands or feet
  • Pain that doesn’t get better with medicine
  • Sudden paleness of the skin or nail beds
  • Worsening yellowish color of the skin or eyes (jaundice)
  • Trouble hearing
  • Trouble with vision or seeing
  • Change in speech
  • Limping, joint swelling, or joint or muscle pain

 

© 2000-2021 The StayWell Company, LLC. All rights reserved. This information is not intended as a substitute for professional medical care. Always follow your healthcare professional's instructions. This information has been modified by your health care provider with permission from the publisher.

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