Sickle Cell Disease In Children
WHAT YOU SHOULD KNOW:
Sickle cell disease is a genetic disease that causes your child's body to break down too many red blood cells (RBCs). RBCs carry oxygen to all the organs and tissues of your body. Your child is at risk for sickle cell disease if both of his parents have the gene for sickle cell disease. Your child's healthcare provider can confirm he has sickle cell disease from the shape of his RBCs.
CARE AGREEMENT:You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's caregivers to decide what care you want for your child.
- Sickle cell disease increases your child's risk for infection. Your child may not grow as fast as other children. He may reach puberty at a later age than other children. He may also go through times when he has increased pain and swelling. Your child may have a sickle cell crisis. This may cause severe pain and damage to organs, such as his kidneys or spleen. Sickle cell disease may also cause jaundice (yellowing of his skin and eyes).
- Sickle cell disease may lead to long-term lung, eye, or bone problems. It may cause boys to have painful erections (priapism). Sickle cell disease increases your child's risk for a seizure or stroke. Even with treatment, sickle cell disease increases the risk for organ failure, such as liver or kidney failure. These conditions may become life-threatening.
WHILE YOU ARE HERE:
is a legal document that explains the tests, treatments, or procedures that your child may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your child's medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done to your child. Make sure all of your questions are answered.
Stay with your child for comfort and support as often as possible while he is in the hospital. Ask another family member or someone close to the family to stay with your child when you cannot be there. Bring items from home that will comfort your child, such as a favorite blanket or toy.
Intake and output:
Your child's healthcare providers may need to measure how much liquid your child is drinking. They may also need to measure his urine. Your child may need to urinate into a container. If your child wears diapers, save them so a healthcare provider can weigh them. Do not throw away diapers or flush your child's urine down the toilet before asking your child's healthcare provider. Healthcare providers may also weigh your child every day.
Your child may need extra oxygen if his blood oxygen level is lower than it should be. He may get oxygen through a mask placed over his nose and mouth or through small tubes placed in his nostrils. Ask before you take off the mask or oxygen tubing.
- Pain medicine helps decrease pain. Do not let your child's pain become severe before you ask for more medicine.
- Antibiotics treat or prevent a bacterial infection.
- Hydroxyurea helps your child's body make red blood cells that are less likely to sickle. This may help decrease his pain.
- Bronchodilators help your child breathe more easily.
An x-ray, ultrasound, or MRI may show if sickle cell disease has affected blood vessels or organs. Your child may be given contrast dye to help healthcare providers see his blood vessels or organs. Tell the healthcare provider if your child has ever had an allergic reaction to contrast dye. Do not let your child enter the MRI room with anything metal. Metal can cause serious injury. Tell the healthcare provider if your child has any metal in or on his body.
- IV fluids prevent dehydration and help prevent a sickle cell crisis.
- Incentive spirometer is a device to help your child take deep breaths. Have him use this as often as healthcare providers recommend.
- Occupational and physical therapy may help improve movement and strength and decrease pain. An occupational therapist teaches your child skills to help with his daily activities.
- A blood transfusion replaces blood with RBCs that are not sickle shaped.
- Surgery may be done to remove a part of your child's spleen.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.