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Hemophilia In Children
WHAT YOU NEED TO KNOW:
Hemophilia is a bleeding disorder caused by a problem in your blood's ability to form a clot. Hemophilia causes your child to bleed more and longer than normal. Certain blood cells and substances normally form clots and stop your child from bleeding too much. These include platelets, clotting factors, vitamin K, and fibrinogen. Platelets are a type of blood cell that helps form blood clots. Clotting factors are proteins that work with platelets to clot the blood. Hemophilia usually occurs only in boys.
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.
An IV is a tube placed in your child's vein for giving medicine or liquids. Blood products may be given by IV injection or infusion (fluid is put directly through a vein).
Caregivers will check your blood pressure, heart rate, breathing rate, and temperature. They will also ask about your pain. These vital signs give caregivers information about your current health.
- Antifibrinolytic proteins: These medicines keep blood clots from breaking down. They may be used to stop bleeding in your child's mouth, nose, or abdomen.
- Desmopressin: This medicine may be used to treat hemophilia A. This works by increasing the amount of clotting factor VIII in your child's blood.
- Blood tests: A sample of your child's blood will be taken for tests. These tests will check the amount and type of clotting factors in your child's blood. Your child's caregiver may also need to know how well your child's clotting factors and platelets work. Blood tests may need to be repeated often since clotting factors may change over time.
- CT scan: This test is also called a CAT scan. An x-ray machine uses a computer to take pictures of your child's body. He may be given a dye before the pictures are taken to help caregivers see the pictures better. Tell the caregiver if your child has ever had an allergic reaction to contrast dye.
- Joint x-ray or scan: This is a picture of the bones and tissues in your child's joints. It may be done to check for bleeding. Your child may also need x-rays of his chest, abdomen, and other body parts.
- MRI: This scan uses powerful magnets and a computer to take pictures of his organs, bones, nerves, and blood vessels. He may be given dye to help the pictures show up better. Tell the caregiver if your child has ever had an allergic reaction to contrast dye. He should not enter the MRI room with anything made of metal. Metal can cause serious injury. Tell the caregiver if your child has any metal in or on his body.
- Replacement therapy: Certain blood products, called factor concentrates, may be given to your child. They replace the missing clotting factor in your child's blood. Replacement clotting factor is given so that your child's blood will be able to clot and to stop any bleeding. Clotting factor can come from human blood or be artificial. You may be taught how to give clotting factor to your child at home.
- IV access devices: Your child may need a central venous line (CVL) device. This is needed if an IV cannot be easily placed in his hand, arm, or foot. This may also be done if he needs frequent IV infusions of blood products, such as clotting factor. These IV access devices are surgically placed into a large vein, usually in the upper chest.
- Central venous catheter: A catheter is a plastic tube placed in a blood vessel. Your child may have a CVL catheter that is placed partially under his skin. It may be connected to tubing and an IV bag, or capped. It can be used to give your child blood products and IV fluids. You will need training on how to care for your child's central venous catheter.
- Implanted port: A port is a small device that is placed under the skin of your child's chest or arm. A CVL catheter placed in a large vein is attached to the port. A special needle is inserted through the skin to access the port. With the needle in place, your child can receive blood products and IV fluids through the port. After an IV treatment is finished, the needle is removed. You will need training on how to care for your child's port.
- Blood transfusion: During a blood transfusion, your child will get whole blood, or parts of blood through an IV. You may be worried that your child will get AIDS, hepatitis, or West Nile Virus from a blood transfusion. The risk of this happening is rare. Blood banks test all donated blood for AIDS, hepatitis, and West Nile Virus.
- Surgery: Your child may need surgery to treat other health problems caused by hemophilia. Surgery may be done to correct problems, such as joint swelling and bleeding into the joints. Surgery may also be done to treat or prevent further problems, or worsening of symptoms.
- If your child has a central venous catheter or a port, he may get an infection or blood clots. Your child may develop antibodies that work against the clotting factor he receives. This could prevent him from being able to receive clotting factor treatments. Even with treatment, your child may get permanent damage to his joints, which can cause pain and decreased movement.
- Without treatment, your child may have frequent bleeding episodes. He can have repeated episodes of bleeding in his joints that cause joint pain and swelling. Over time, this can lead to arthritis and chronic pain in the injured joints. Your child may have bleeding in his brain, lungs, chest, or abdomen. He may have a bleeding episode in which he loses a lot of blood and needs a transfusion or surgery. These problems can be life-threatening.
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.
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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.