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Marfan Syndrome in Children
WHAT YOU NEED TO KNOW:
Marfan syndrome is a disorder that weakens your child's connective tissue. Connective tissue gives strength and support to tendons, ligaments, blood vessels, and other parts of the body. Marfan syndrome may keep many of these parts of his body from being as strong as they should be. This can cause problems in his bones, eyes, heart, and blood vessels.
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.
is a small tube placed in your child's vein that is used to give medicine or liquids.
Healthcare providers will check your blood pressure, heart rate, breathing rate, and temperature. They will also ask about your pain. Vital signs give information about your current health.
- Beta-blockers: These help your child's heart beat softer and slower. This may prevent damage to his heart and aorta. The aorta is the large blood vessel that carries blood from the heart and lungs to the body.
- Blood tests: Your child may need blood tests to give healthcare providers information about how his body is working. The blood may be taken from your child's arm, hand, finger, foot, heel, or IV.
- CT angiography: An x-ray machine uses a computer to take pictures of your child's blood vessels. Your child may be given dye to help his blood vessels show up better in the pictures. Tell the healthcare provider if he has ever had an allergic reaction to contrast dye.
- An echocardiogram is a type of ultrasound. Sound waves are used to show the structure and function of your child's heart.
- Heart monitor: This is also called an ECG or EKG. Sticky pads placed on your child's skin record the electrical activity of his heart.
- Eye exam: This test uses instruments to look inside your child's eyes. Devices and lenses may be used to look for eye problems, such as glaucoma or cataracts.
- MRI: This scan uses powerful magnets and a computer to take pictures of your child's body. An MRI may show problems in your child's bones, lungs, or heart. Your child may be given dye to help the pictures show up better. Tell the healthcare provider if your child has ever had an allergic reaction to contrast dye. Do not enter the MRI room with anything made of metal. Metal can cause serious injury. Tell the healthcare provider if your child has any metal in or on his body.
- X-ray: These are pictures of your child's bones, chest, and tissues. They may show problems caused by Marfan syndrome.
- Your child may bleed more than expected during surgery, or develop an infection. Without treatment, your child's signs and symptoms may worsen and new ones may appear. Your child may have vision problems, glaucoma, and retinal detachment. Retinal detachment is a serious condition in which the retina (a layer of tissue) pulls away from the blood vessels in the eye. This problem could lead to blindness if left untreated. An abnormal chest shape may cause trouble breathing. He may develop lung problems, such as a collapsed lung. This condition can cause chest pain and shortness of breath.
- Your child's heart valves may become weak, which affects the blood flow in his heart. His heart may not beat correctly. The walls of his aorta may also become weak and widen, which can lead to a tear, leak, or aneurysm. An aneurysm is a bulging of the aorta that can burst and cause bleeding inside his body. These problems may 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 healthcare providers 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.
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