Sickle Cell Disease in Children: Care Instructions
Overview
Sickle cell disease turns normal, round red blood cells into misshapen 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 advice line (811 in most provinces and territories) 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 advice line 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 jewellery that says that your child has sickle cell disease.
- Help your child avoid infections such as COVID-19, colds, and influenza (flu). Remind your child to wash their hands often. Get your child a flu vaccine every year. Stay up to date on your child's COVID-19 vaccinations.
- Make sure your child gets a pneumococcal vaccine. 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.
- 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 severe problem from sickle cell.
- 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 his or her 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.
- 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.
After you call 911, the 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 or nurse advice line now or seek immediate medical care if:
Watch closely for changes in your child's health, and be sure to contact your doctor or nurse advice line if your child is having any problems.
Where can you learn more?
Go to https://www.healthwise.net/patientEd
Enter U835 in the search box to learn more about "Sickle Cell Disease in Children: Care Instructions".
Current as of: December 13, 2023
Author: Healthwise Staff
Clinical Review Board
All Healthwise education is reviewed by a team that includes physicians, nurses, advanced practitioners, registered dieticians, and other healthcare professionals.
