Consumer Information

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 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.

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.

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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