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.

AFTER YOU LEAVE:

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 list of your child's medicines: Keep a written list of the medicines your child takes, the amounts, and when and why they are taken. Bring the list of your child's medicines or the medicine bottles when you visit your child's caregivers. Ask your child's caregiver for more information about the medicines. Do not give any medicines to your child without first asking your child's caregiver. This includes prescriptions, over-the-counter drugs, vitamins, herbs, or food supplements.
  
  
• Give your child's medicine as directed: Always give your child's medicine as directed by his caregivers. Call your child's caregiver if you think your child's medicines are not helping. Call if you feel your child is having side effects. Do not quit giving the medicines to your child until you discuss it with your child's caregiver.

Ask your child's caregiver when to return for a follow-up visit. Keep all appointments. Write down any questions you and your child may have. This way you will remember to ask these questions during your child's next visit.

Wellness hints:

• Give your child a healthy diet. Give your child healthy food from all of the 5 food groups: fruits, vegetables, breads, dairy products, meats and fish. Eating healthy foods may help your child feel better and have more energy. It may also help him get better faster.
  
  
• Encourage drinking healthy liquids. Try to get your child to drink as much fluid as his caregiver says he should have each day. Follow your child's caregiver's advice if your child is on a fluid restriction. For most children, good liquids to drink are water, juices, and milk. Limit the amount of caffeine your child drinks. Caffeine may be found in tea, soda pop and some sports drinks and foods.

For more information: Marfan syndrome is a life-changing disease for your child and your family. Accepting that he has Marfan syndrome may be hard for him. Your child and those close to him may feel angry, sad, or frightened. These feelings are normal. Let him talk to his caregivers, family, or friends about his feelings. He may also want to join a support group with other children who have Marfan syndrome. Call or write the following 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
  

• American Heart Association National Center
  7272 Greenville Avenue
  Dallas, TX 75231-4596
  Phone: 1-800-242-8721
  Web Address: http://www.americanheart.org
  

• National Eye Institute
  2020 Vision Pl.
  Bethesda, MD 20892-3655
  Phone: 1-301-496-5248
  Web Address: http://www.nei.nih.gov
  

CONTACT A CAREGIVER IF:

• You have a fever (increased body temperature).
  
  
• 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.

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

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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