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Sickle Cell Disease in Children
WHAT YOU SHOULD KNOW:
- Sickle cell disease occurs when red blood cells (RBC's) form abnormal curved shapes called sickles. Sickle-shaped red blood cells break down much faster than normal cells. Fast red blood cell breakdown leaves your child with fewer red blood cells than he needs. Not having enough red blood cells causes problems such as anemia. The sickle shape of these cells also causes problems, because the cells tend to get stuck in blood vessels. This blocks the blood vessel, and does not let enough blood flow to where it needs to go in your child's body. A child gets sickle cell disease if both of his birth parents have the gene for sickle cell disease.
- Your child may have pain, trouble breathing, and other problems from sickle cell disease. Blood tests are used to learn if your child has the disease. Computed tomography (CT) scans and other tests are used to check if the disease is causing other medical problems. Medicine, blood transfusions, fluids, and surgery may be used to treat sickle cell disease. Your child may need help coping with pain and other symptoms. Treatment can decrease the amount of pain your child feels. Certain treatments may also decrease his risk of having problems such as a stroke or a sickle cell crisis. Treatments may give your child enough energy to play sports and be active.
Keep a current list of your child's medicines:
Include the amounts, and when, how, and why they are taken. Bring the list and the medicines in their containers to follow-up visits. Carry your child's medicine list with you in case of an emergency. Throw away old medicine lists. Give vitamins, herbs, or food supplements only as directed.
Give your child's medicine as directed:
Call your child's healthcare provider if you think the medicine is not working as expected. Tell him if your child is allergic to any medicine. Ask before you change or stop giving your child his medicines.
- Pain medicine: Pain medicine may help your child cope with his pain. Medicines such as acetaminophen or ibuprofen may be suggested by your child's caregiver for mild pain. You may need to give your child stronger pain medicine if the pain is worse. Ask you child's caregiver what to use to treat pain. Ask when to take your child to the hospital if the pain does not decrease or go away. Your child may want to use a pain scale to tell you how much pain he is feeling.
- Antibiotic medicine: This medicine is given to help prevent or fight infections.
- Bronchodilators: This medicine may help your child breathe more easily.
- Vitamins: Your child may need to take a vitamin called folic acid. Folic acid can help prevent blood vessel problems that can come with sickle cell disease. Your child may need to take a multivitamin every day.
Ask for more information about where and when to take your child for follow-up visits:
For continuing care, treatments, or home services for your child, ask for information.
- At follow-up visits, caregivers will check on how your child is growing. Vision and hearing tests, blood tests, x-rays and other tests may be done. Tell caregivers about your child's pain. Ask them what you should do at home to decrease it. Older children should talk to caregivers about their pain. Tell caregivers if your child is having trouble coping with sickle cell disease. If your child needs to have blood transfusions, schedule them with his caregiver.
Ways to help your child cope with pain and problems that can come with sickle cell disease:
- Managing pain.
- Put a heating pad on painful areas to help decrease your child's pain. Do not use ice or cold packs. Gently massaging (rubbing) painful areas may also help decrease pain. Gentle activity, such as walking, can help your child cope with pain. Taking a warm bath may help decrease pain. Children may feel less pain if they are not scared and anxious. Help your child learn ways to relax. This can include lying down and slowly tensing and relaxing his muscles, starting at the top of his body and moving downward.
- If your male child gets priapism, give him more liquids to drink. He may try going to the bathroom, or taking a warm bath or shower. Exercise such as walking may also make priapism go away. Give him pain medicine as your caregiver has told you to.
- Stay with your child when he is in pain, and when he needs to see a caregiver. The pain that your child feels may be less if you stay with him. Help your child think about things other than his pain. Younger children can color pictures and do crafts to help them forget about the pain.
- Know the early signs of infection and other emergencies. Learn the signs of infection. Do not wait to take your child to his caregiver if you see these signs. Ask caregivers when your child should go to the hospital if pain treatment at home has not worked. Ask caregivers to show you how to feel your child's abdomen. You can do this to check if his spleen is larger than it should be. By finding this problem, you may be able to quickly get help for your child. Do not keep reptiles and pets that carry germs in your home. Germs from these animals can cause diseases, and make your child very ill.
- Make sure your child gets the vaccinations that he needs. Vaccinations are shots that are given by caregivers to help prevent some infections and diseases. Ask caregivers what vaccinations your child needs.
- Talk to teachers in your child's school. Tell them that your child has sickle cell disease. Teach them the signs and symptoms of a crisis, acute chest syndrome and infection. Teach them what to do if they see any signs of these problems.
- Take your child to see a counselor.
- It can be very hard for a child to cope with sickle cell disease. The pain that he feels can make him change the way he acts. He may have trouble with others at school, and he may need to miss school because of medical problems. This can make him feel very sad, or angry. Older children may not feel good about themselves. Your child may feel sad because he has no energy, and helpless because he cannot make the pain go away.
- Caregivers may suggest cognitive-behavior therapy. This therapy teaches your child ways to change his behavior. Ask your child's caregiver for more information about cognitive-behavior therapy.
- Teach your child about the risks of smoking, alcohol, drugs, and having sex. Talk to older children about sexual activity and how to be safe from sexually-transmitted diseases. Talk to older children about smoking. Smoking can make it harder for your child to breathe and lead to medical problems. If you smoke around your child, stop. Breathing in the smoke from someone else (second-hand smoke) is very harmful to a child. Learn about the risks of using street (illegal) drugs, and drinking alcohol (such as beer, wine and other adult drinks). Talk to your child about these risks.
Ways to help prevent a sickle cell crisis:
- Prevent dehydration. Give infants and young children healthy liquids to drink. This may include water, juice and milk. Offer and encourage older children to drink healthy liquids, especially if they are outside in warm weather, or playing sports. Dehydration can happen if your child does not drink enough or loses too much body fluid. Dehydration can cause a sickle cell crisis to begin.
- Balance rest and exercise. Children should rest during a sickle cell crisis. Help your child increase his activity as he feels better. Your child should not do sports that have a greater risk of injury, such as football. He should not lift heavy weights for exercise. Talk to your child's caregiver about the best exercise plan for him.
- Avoid cold places. Help your child stay warm, but not too hot. Make sure he is dressed warm enough in cold weather. Do not let your child move quickly from a warm area to a cold area. Do not let your child dive into or swim in cold water. If your child gets too cold, this can start a sickle cell crisis.
- Offer or encourage a healthy diet. Children with sickle cell disease should get enough folic acid. This vitamin is found in vegetables and fruit. Ask your child's caregiver if you need to change your child's diet.
CONTACT A CAREGIVER IF:
- There is blood in your child's urine.
- Your child has any new sign or symptom, even if it goes away.
- Your child has diarrhea (loose, watery stools).
- Your child is constipated (having hard, dry stools less often than usual, that are difficult to pass).
- Your child tells you that he cannot see well.
SEEK CARE IMMEDIATELY IF:
- Your child has a cough, more trouble breathing, or chest pain.
- Your child has a fever (high body temperature).
- Your child has a new headache, or a headache that is worse or different from those he has had in the past.
- Your child has a new rash, itchy skin, or feels sick after starting to use a new medicine.
- Your child is confused, has problems speaking, or has weakness or numbness in his arm, leg, or face.
- Your child is more sleepy, and his skin looks lighter or whiter than usual, or he suddenly turns very pale, and his belly is swollen.
- Your child is not acting like himself, he has a seizure, or he loses consciousness (passes out).
- Your child's pain does not decrease or go away after trying to treat his pain at home.
- Your child says that he cannot see out of one or both eyes.
- Your child tells you that he cannot cope with his pain or the disease, and that he wants to die.
- Your son's penis stays erect and painful for two hours.
Learn more about Sickle Cell Disease in Children (Aftercare Instructions)
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