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There are many ways you can help children and their families get the care they need.
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 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 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.
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:
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
General guide for patients and families
Read our guide to essential information across the hospital.
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.
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.”