Marfan Syndrome In Children

WHAT YOU SHOULD KNOW:

• Marfan syndrome is a disorder that weakens your child's connective tissue and cause problems in his eyes, heart, and bones. The connective tissue gives strength and support to tendons, ligaments, blood vessels, and many other structures in the body. With Marfan syndrome, many of these structures are not as strong as they should be. Your child’s blood vessels may get damaged easily and other body parts may have defects (problems). Marfan syndrome is caused by an abnormal gene that causes connective tissue to become weak. Genes are little pieces of information that tell the body what to do or what to make. Your child may look tall and thin, with long arms and legs, a long face, and a small chin. He may have trouble seeing and breathing, an abnormal heartbeat, and abnormal bones in his body.
  
  
• Blood tests, computerized tomography (CT), magnetic resonance imaging (MRI), electrocardiograph (ECG), and x-rays may help diagnose Marfan syndrome. Treatment is given to prevent further damage to body areas affected by Marfan syndrome. Treatment may also correct problems caused by Marfan syndrome. He may be given medicines to help his heart beat correctly. Your child's caregiver may do surgery to repair damaged areas of his eyes, bones, and heart. Your child may also need to avoid activities that may strain his heart. Diagnosing and treating Marfan syndrome as soon as possible may relieve symptoms such as loss of movement and pain. Treating Marfan syndrome may also help your child live longer.

INSTRUCTIONS:

Medicines:

• Beta blockers: These medicines may help your child's heart beat softer and slower. Having a slower and softer heartbeat may prevent damage to his heart and aorta.
  
  
• 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 primary 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.

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.

CONTACT A CAREGIVER IF:

• You have a fever.
  
  
• Your child has pain in his hips and has problems walking.
  
  
• Your child cannot make it to his next appointment.
  
  
• You have questions or concerns about your child's condition or medicine.

SEEK CARE IMMEDIATELY IF:

• Your child has very bad pain in his chest or abdomen (belly).
  
  
• Your child has pain in his eyes and has trouble seeing all of a sudden.
  
  
• Your child has trouble breathing all of a sudden.
  
  
• Your child cannot control his urine or bowel movements.

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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.

Learn more about Marfan Syndrome In Children (Aftercare Instructions)