Patient education: Sickle cell disease pain in children – Discharge instructions (The Basics)

What are discharge instructions? — Discharge instructions are information about how to take care of your child after getting medical care for a health problem.

Why does sickle cell disease cause pain? — In people with sickle cell disease, some of the red blood cells have an abnormal shape (figure 1). These "sickle cells" have sharp edges and can cause the blood vessels to get blocked. When this happens, the red blood cells don't bring enough oxygen to the body's organs. This is what causes pain.

Pain from sickle cell disease might be felt in the bones, chest, or other parts of the body. Often, young children have pain and swelling in the fingers. Doctors call this "dactylitis." The pain can be mild to severe and can last hours to days. Some children also have other symptoms with their pain.

How do I care for my child at home? — Make sure that you understand exactly what you need to do to care for your child. Ask questions if there is anything you do not understand.

You should also:

●Use the pain medicines that the doctor prescribed. This might include strong medicines like opioids, as well as other medicines like acetaminophen (sample brand name: Tylenol). Make sure that you know the doses, when to give each medicine, and what side effects to watch for.

●Use warm compresses as needed. Do not put ice packs or cold compresses on the area of pain unless the doctor tells you to. Sometimes, cold can make pain worse by causing more sickle cells to form.

●Make sure that your child gets enough rest. They should also drink plenty of fluids to stay hydrated.

●Try to find ways to help your child manage stress. Get support if they are having trouble in school because of pain or missed school days. Talk to their doctor if they have symptoms of anxiety and depression. Helping them manage these can help with the stress related to pain.

●Give your child all of their regular medicines as instructed, including hydroxyurea, regular antibiotics if needed, and others. Make sure that they stay on schedule with their vaccines. Hydroxyurea reduces the number of sickle cells and decreases the chances of having pain. Antibiotics and vaccines reduce the risk of infections, which can cause pain and other problems.

What side effects should I watch for? — Different pain medicines have different side effects.

●"NSAIDs" are medicines like ibuprofen (sample brand names: Advil, Motrin). They can cause kidney damage in people with sickle cell disease, so it is very important to follow the doctor's instructions. Typically, your child would not take an NSAID for more than a few days at most.

●Opioids can cause constipation and itching. Make sure that your child is having regular bowel movements. Tell your child's doctor if they are having trouble with constipation or other side effects. Antihistamines can help with itching. Your doctor can review other side effects of opioids and what to watch for.

What follow-up care does my child need? — Your child's doctor will want to see them again soon. They will review your child's treatment and make changes if needed. Make sure that you know when to schedule the next appointment and where to go.

If your child is having chronic pain or more frequent episodes of severe pain (more than 2 or 3 times a year), talk to their doctor. They might recommend other treatments to reduce pain episodes.

When should I call the doctor? — Your child's doctor will tell you what to look for and when to call for help. In general, someone should call right away for any of the following problems. Do not wait to call, even if it's the middle of the night. It's important to get treatment right away.

Get help if your child:

●Has symptoms of something called "acute chest syndrome" – These include shortness of breath, new chest pain or cough, or a new fever.

●Has symptoms of a stroke, such as:

•Severe headache

•Seizure

•Not being able to wake up

•Trouble speaking

•Drooping of the face on 1 side

•Weakness in an arm or leg

●Has pain that doesn't get better after treatment at home – You don't need to wait until pain gets severe before getting help.

●Has a fever or have other signs of infection – These might include feeling very tired, loss of appetite, stiff neck, headache, trouble breathing, or cough.

●Has other problems related to their sickle cell disease – Your child's doctor will tell you what to look for and when to call.

More on this topic

Patient education: When your child has sickle cell disease (The Basics)
Patient education: Sickle cell disease (The Basics)
Patient education: Sickle cell trait (The Basics)