Compiled from doctors, families and people with CLOVES (Download PDF here)
Updated May 2012
Is there a cure for CLOVES?
“Although there is no cure for CLOVES Syndrome, we can successfully address its complications. Our goal is to create a better quality of life for these children.” - Ahmad Alomari, MD Co-Director of the Boston Children's Hospital Vascular Anomalies Center
Surgery and other medical interventions are the only treatments for CLOVES overgrowth, vascular anomalies andother related medical issues. Boston Children's Hospital just started doing research into CLOVES/DNA Sequencing in March of 2011- you can learn more about it here . The doctors still need tissue samples taken from past surgeries and are continuing to recruit patients. Please email Dr Kyle Kurek at Kyle.Kurek@childrens.harvard.edu and Dr. Matthew Warman at Matthew.Warman@childrens.harvard.edu, if you are interested in participating.
When we get updates the CLOVES DNA Sequencing project from Drs. Warman and Kurek, and will share this new information on this website and through the CSC E-Newsletter.
Are there any medicines to treat CLOVES?
The short answer is no, however there are studies overseen by Dr. Denise Adams at Children's Hospital Medical Center in Cincinatti and Dr. Cameron Trenor of Boston Children's Hospital, to treat children with complex vascular anomalies, which many people with CLOVES have.
Check out the link to read more about the requirements for the study - your child may also be eligible for off trial/compassionate care use, as determined by each physician directing the study. Additionally, here is some data about how Sirolimus/Rapamycin has worked for some people with other vascular tumors - http://bit.ly/s9CEbJ.
Contact us, or the doctors directly, for more information about this clinical trial.
My child just got diagnosed with CLOVES Syndrome. A lot of what I have read is really scary. What can I expect for him in his lifetime?
As CLOVES is a rare and newly defined condition, there are many unknowns still.
Boston Children's Hospital, in collaboration with other centers, is ramping up to collect information from people currently diagnosed with CLOVES, in order to learn more about what the future holds for our loved ones. We will share more information on the website, and thru our E-Newsletter, about this CLOVES Data Collection project, once we have more details.
Is CLOVES Syndrome Community part of CLOVES Syndrome Foundation?
Great question!! CSC and CSF are two separate organizations dedicated to sharing information and raising awareness about CLOVES.
CLOVES Syndrome Community was developed in 2009 with the understanding that when parents and loved ones are informed, empowered, and connected with others facing similar challenges, they will be better equipped to support their own or their child’s medical, emotional, and physical needs. We are committed to bringing you, our CLOVES friends/family, up to date and accurate medical information, support and resources. CLOVES Syndrome Community was determined to be a 501C3 (Non Profit Public Charity) Organization by the Internal Revenue Service in July of 2011.
You can learn more about CLOVES Syndrome Foundation and the great work that they do at www.clovesfoundation.org
Is tethered cord something you are born with or can it develop later in life?
Tethered cord means that the spinal cord has some kind of attachment that prevents the spinal cord from moving freely within the spinal canal. This attachment is usually some type of tissue that children have from birth, like a fatty filum (strand of fat), lipoma (bigger collection of adipose - fat - tissue) or dermal sinus tract (strand of tissue from outside the spinal canal to the spinal cord). However, sometimes tethering can occur later in life, especially after surgery (when scar tissue can stick the spinal cord to the lining of the spinal canal) or after a bad infection, like meningitis (when the inflammation of the infection can lead to scar tissue). It is important to understand that there is a difference between radiographic tethering (which means that the MRI or other imaging studies show some kind of connection, but which may NOT have symptoms and may NOT need surgery) and clinical tethering (which means that one sees a site of tethering on imaging AND there are symptoms that can be directly related to the things that are seen on the imaging). If there is an attachment that is thought to be tugging on the spinal cord, then sometimes symptoms can develop - depending on where the tethering occurs - that can lead to problems with spinal cord function (like weakness, sensory changes, scoliosis (bend in the back) or pain). The diagnosis of tethered cord can be difficult and it is important to talk with physicians who see these kind of conditions routinely in order to put together the best plan of treatment for your child.
What are the reasons for not surgically treating tethered cord ?
As mentioned above, there may be situations in which one can see some kind of tethering (attachment from scar tissue or birth-related structures) on imaging studies (like MRI), but which are not causing any symptoms. In some cases, it may be that the risk of doing surgery to disconnect the tethering site may be greater than the risk of leaving things alone. On the other hand, there are sometimes situations when the child has no symptoms, but the imaging shows a problem that will very likely become worse with time, in which case the risk of surgery - even with no symptoms - may be justified. The decision to operate or to monitor a tethered cord is often very dependent on individual MRI findings, symptoms and co-exisiting medical conditions, so it is important to talk to your doctor to learn about the pros and cons of different management plans.
My child was diagnosed with Klippel Trenaunay Syndrome (KTS) or Proteus Syndrome and now the doctors say s/he has CLOVES? What's the difference?
CLOVES is a relatively new diagnosis just identified in 2007. Anyone who was diagnosed before 2007 was diagnosed with a different syndrome, as the term CLOVES did not yet exist. All three syndromes listed above are similar because they encompass both vascular anomalies and overgrowth. One of the major differences are that people with CLOVES have spinal involvement - be it scoliosis, spinal vascular anomalies or skeletal changes - and also have trunk/abdominal vascular malformations/overgrowth.
Additionally, people with CLOVES are born with some collection of physical differences and/or physical differences have been noted on prentatal ultrasound before birth. Conversely, people with Proteus syndrome are born without obvious physical differences, then develop progressive overgrowth and skeletal concerns as the child gets older.
Two additional concerns that some people with CLOVES have are 1) an increased risk of developing blood clots and/or have 2) an increased risk of Wilms (kidney) tumors. For more information, please see our Similar Syndromes and Screening Guide links as well.
I just found out through my child's quarterly ultrasound screening, that my child has cysts on her kidneys. What do we do next?
What we know is that there are a few abnormal kidney findings in people with CLOVES including difference in sizes, cysts, unusual architecture and Wilms Tumors. New or changing kidney abnormalities should be reviewed by a Multi-disciplinary Vascular Anomalies Center with expertise in CLOVES, to help determine their significance.
My child's doctors don't know anything about CLOVES - what should I do?
The medical management of CLOVES is extraordinarily challenging, and we recommend that you consult a Multidisciplinary Vascular Anomalies Center that has expertise with both overgrowth and complex vascular anomalies. We can help you in finding a facility near you and/or a multidisciplinary practice to collaborate with you and your child's local physicians.
Additionally, Boston Children's Hospital has a process where they review your child’s medical records, and may be able to provide a diagnosis and treatment recommendations without a visit to Boston. Call the Children’s Hospital Boston Vascular Anomalies Center at 617-355-5226 to find out more about the VAC Conference process.
In the meantime, you can print off a general medical article about CLOVES like this one - http://bit.ly/oEyh4W - for your child's doctor. If you do not have access to a printer, we can mail a copy of one to you.
My child’s doctors are suggesting that my child have a large vein removed. I don’t understand why.
Many people with CLOVES are born with or develop enlarged veins. The concern about large veins and CLOVES is that the blood flow becomes stagnant (slow moving) and this increases the risk of blood clots (also called a deep vein thrombosis, or DVT). The decision to close or remove a large vein should be directed by an expert in this procedure, and by weighing risks and benefits of removal. Options for treatment are by surgery, embolization to close the vein from inside the vein, using laser or coils, or the vein may need be carefully monitored or observed. Removing a vein that has ineffective blood flow does not negatively impact blood flow in other veins.
My child’s doctor is recommending we remove her toes? How do I make the decision to amputate toes or alter her feet?
Considering to surgically alter a child’s foot is often an emotional decision for parents and loved ones to make. Often the recommendation to remove toes or change the shape of feet is made if:
My child seems to get sick all the time! Do others have this problem?
Many people report that their children with CLOVES get sick frequently. What we know is that the lymphatic system is an important part of the immune system, and many people with CLOVES have lymphatic involvement. Many families take extra “common sense” precautions, such as washing hands frequently and by using anti-bacterial hand gel, especially in the doctor’s office, hospital or out in the community around other people/children. Having CLOVES is not a reason to live in a bubble – in terms of germ and illness concerns, and using common sense will usually works well.
Where can I learn more about CLOVES?
CLOVES Syndrome Community is grateful for our Medical Advisory Board, who help us navigate the medical aspects of this syndrome. We are constantly updating information on the website and via social media, as more is uncovered about CLOVES. Sign up for our mailing list here to be informed of the latest news.
There are medical articles and resources here. We have an active closed/private FaceBook group where you can learn from others with CLOVES, a FaceBook FAN page to share information and raise awareness about CLOVES with friends and family and the CLOVES pages on Boston Children's Hospital website.
If you have any other questions that were not answered here, please email us at email@example.com