Treatments for CLOVES Syndrome in Children

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What are the treatment options for a child with CLOVES?

It's important to remember that every child with CLOVES syndrome is very different, and must be treated as an individual. Since the disorder can involve so many parts of the body, in different ways, treatment has to be customized at every stage of the process. 

Symptoms should always be addressed as early in a child's life as possible. (Enlarged veins, for example, are much easier to operate on in a young child than in an older, bigger child or adult.)

Sclerotherapy

Sclerotherapy is a non-surgical procedure that can help reduce the size and pain associated with vascular anomalies occurring with CLOVES, such as lymphatic and venous malformations.

During sclerotherapy, an interventional radiologist injects a toxic agent (called a sclerosant) into the malformation. This causes it to scar over, relieving symptoms and possibly shrinking the anomaly at the same time.
 
Embolization

Embolization is a minimally invasive procedure used to reduce the size of arteriovenous malformations and other vascular anomalies associated with CLOVES syndrome.

During embolization, an interventional radiologist carefully moves a thin tube called a catheter up through the child's arteries and to the exact location of the problem. The doctor then injects a special substance to close the abnormal vessels. 

Debulking surgery

Some children need debulking surgery to remove a portion of the overgrown tissue and blood vessels caused by CLOVES syndrome. This involves multiple lengthy and complex procedures performed over a period of time. 

Though debulking is a major, invasive type of surgery, it can be life-changing for kids who are essentially crippled by their overgrown limbs or painfully overgrown veins. 

Preventing pulmonary embolisms

To reduce the risk of pulmonary embolisms—life-threatening clots that travel through the bloodstream and into the lungs; they are a significant risk for children with vascular problems related to CLOVES—a device called an inferior vena cava (IVC) filter can be inserted before surgery.

The interventional radiologist uses special imaging technology to guide the device into the inferior vena cava (the main abdominal vein responsible for transporting blood from a child's lower body). Once in place, the filter can trap any clots that are attempting to move through, stopping them from reaching the heart and lungs. 

Managing spine, bone/joint and kidney problems

Your child's treating clinician will refer her to specialists to manage her particular spinal, bone and joint issues, as well as any kidney problems related to her CLOVES syndrome.

Why is it so important to have a multidisciplinary team treating CLOVES?

CLOVES is a complex disorder that can cause a number of serious symptoms, impacting multiple organs and functions. As a result, the disease requires a team approach by pediatric experts who are skilled and experienced in treating particular types of problems in particular parts of the body—and who will work closely together at every step of the way.

Here at Boston Children's Hospital, our CLOVES syndrome experts:


Coping and support 

In addition to the clinical information provided on this webpage, Boston Children's offers several other resources designed to give your child and family comfort, support and guidance. 

Resources at Boston Children's

  • Boston Children's Center for Families is dedicated to helping families locate the information and resources they need to better understand their child's particular condition and take part in their care. All patients, families and health professionals are welcome to use the center's services at no extra cost. The Center for Families is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information. 
     
  • Boston Children's Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:
    • being sick
    • facing uncomfortable procedures
    • handling pain
    • taking medication
    • preparing for surgery
    • changes in friendships and family relationships
    • managing school while dealing with an illness
       
  • The Experience Journal was designed by Boston Children's psychiatrist-in-chief, David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about living with a variety of medical conditions, the “befores” and “afters” of surgery and going through many other medical experiences.
     
  • Boston Children's Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide.” (Adobe Acrobat required to view and download) Topics in the booklet include:
    • talking to your child about her condition
    • preparing for surgery and hospitalization
    • supporting siblings
    • taking care of yourself during your child's illness
    • adjusting to life after treatment
        
  • The Boston Children's chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child's treatment.
     
  • Boston Children's International Center is a resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.  

General guide for patients and families

Read our guide to essential information across the hospital.

Helpful links 

Please note that neither Boston Children's Hospital nor the Vascular Anomalies Center at Boston Children's unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

  • CLOVES Syndrome Community
    An exhaustive informational resource, featuring an active community that supports, educates, empowers and improves the lives of those affected by CLOVES syndrome.
     
  • CLOVES Syndrome Community Facebook Page
     
  • CLOVES Syndrome Foundation
    Dedicated to improving the lives of CLOVES syndrome patients by funding overgrowth and vascular anomaly research, raising public awareness and providing member support while establishing support networks within the medical and patient family communities.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944

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