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There are many ways you can help children and their families get the care they need.
CLOVES syndrome is a complex disorder that can cause a number of serious symptoms, impacting multiple organs and functions. As a result, every child with CLOVES 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.
While CLOVES cannot be cured, many of its symptoms can be managed or prevented with the right medical and surgical care. Symptoms should always be addressed as early in a child's life as possible. For instance, enlarged veins are much easier to operate on in a young child than in an older, bigger child or adult.
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.
Some of the treatments your child's care team might recommend include:
Children with CLOVES can also be at risk of pulmonary embolisms — life-threatening clots that travel through the bloodstream and into the lungs. To reduce that risk, an interventional radiologist can implant a device called an inferior vena cava (IVC) filter into a child before surgery using special imaging technology. The filter sits in the inferior vena cava (the main abdominal vein responsible for transporting blood from a child's lower body) and traps any clots that are attempting to move through, stopping them from reaching the heart and lungs.
If your child also has kidney problems or spinal, bone or joint issues related to CLOVES syndrome, the VAC team will bring in the appropriate specialists.
CLOVES is quite rare and affects each child differently. Your child's long-term outlook will depend very much on age at diagnosis (the earlier treatment is started, the better), specific symptoms and overall health.
Many children with CLOVES do very well when the disease is mild and the diagnosis and management of symptoms are not delayed. Your child’s doctor will give you specific information about a recommended plan of care and long-term outlook.
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.”