Marfan Syndrome In Children

WHAT YOU SHOULD 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.

AFTER YOU LEAVE:

Medicines:

  • Beta-blockers: These help your child's heart beat softer and slower. This ma y 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.

  • 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. Keep a current list of the medicines, vitamins, and herbs your child takes. Include the amounts, and when, how, and why they are taken. Bring the list or 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.

  • Do not give aspirin to children under 18 years of age. Your child could develop Reye syndrome if he takes aspirin. Reye syndrome can cause life-threatening brain and liver damage. Check your child's medicine labels for aspirin, salicylates, or oil of wintergreen.

Follow up with your child's healthcare provider as directed:

Write down your questions so you remember to ask them during your child's visits.

For more information:

  • National Marfan Foundation
    22 Manhasset Avenue
    Port Washington , NY 11050
    Phone: 1- 516 - 883-8712
    Phone: 1- 800 - 862-7326
    Web Address: www.marfan.org

Contact your child's primary healthcare provider if:

  • Your child has 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 care.

Seek care immediately or call 911 if:

  • Your child has severe pain in his chest or abdomen.

  • Your child has pain in his eyes and has trouble seeing all of a sudden.

  • Your child has sudden shortness of breath.

  • Your child cannot control his urine or bowel movements.

© 2014 Truven Health Analytics Inc. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or Truven Health Analytics.

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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