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It can be hard to find accurate information about Parkes Weber syndrome (PWS) because it’s such a rare condition. Here at Children’s Hospital Boston, we understand the condition — and we know when and how to treat it.
What causes PWS? No one knows the precise cause. Some doctors believe it’s caused by a mutation — in the embryonic stage of life — in the cells that form the vascular system and other tissues. No known food, medication or activity during pregnancy can cause PWS.
How common is it? It’s exceptionally rare.
When does it appear? Doctors can sometimes see evidence of PWS in a prenatal ultrasound and the capillary malformation (“port-wine stain”) is almost always apparent when your child is born.
Who has PWS? It’s equally common in boys and girls.
Often, PWS can be misdiagnosed by your child’s primary physician, simply because the condition is so rare. It often has three characteristic signs:
What symptoms will my child have? PWS affects different kids in different ways. One child may have a mild form of the syndrome with a small capillary malformation and one hand or foot slightly larger than the other. Another child may have a capillary malformation that runs from her chest down her leg, lots of swelling, heart problems and one limb that is much larger than the other. Here are some of the more common symptoms of PWS:
It’s also possible that the increased blood flow through the AVMs in your child’s limb could strain his heart and lead to something called high-output cardiac failure.
What is the long-term outlook for my child?
Because there’s no cure for PWS, we focus on managing your child’s symptoms. The long-term outlook for your child depends on a few factors:
Every child is unique and your care team will work with you to develop a treatment plan that works for your family.
Does PWS get better? No. PWS is a progressive condition, which means that it will grow as your child grows. That said, we have many effective ways to manage your child’s symptoms. For more information, see the Treatment & Care section. What do we do after treatment is over? Depending on the severity of your child’s condition, your doctor may recommend a series of follow-up visits to check for complications and make sure that we’re managing the PWS effectively. A typical follow-up visit may include some or all of the following:
Q: What are the signs that my child has PWS?
A: PWS often has three characteristic signs:
Q: What symptoms will my child have?
A: Here are some of the more common symptoms of PWS:
Q: How is PWS diagnosed?
A: Doctors can sometimes see evidence of PWS in a prenatal ultrasound and the capillary malformation (sometimes called a “port-wine stain”) is almost always apparent when your child is born. If your child is older and you believe he has PWS, we’ll start with a complete medical history and a thorough physical exam. In many cases, that initial exam gives us enough information to diagnose PWS. If there’s any doubt, your doctor may recommend an MRI, ultrasound, CT scan, angiogram or echocardiogram, which can help determine the correct diagnosis and the appropriate next steps in treatment. Read more about diagnosing PWS.
Q: How is PWS treated?
A: It’s a complicated condition, and it affects different kids in different ways. The first step is to have your child evaluated by members of an experienced interdisciplinary vascular anomalies team. No single specialist can manage PWS and its associated problems, as different interventional techniques and surgical procedures are often needed.
For more information, see the Treatment & Care section.
Q: What kind of support will we get from Children’s?
A: At Children’s, we consider you and your child integral parts of the care team and not simply recipients of care. Your care team will be with you every step of the way to ensure that you and your child are getting the support you need.
Q: What is the long-term outlook for my child?
A: Because there’s no cure for PWS, we focus on managing your child’s symptoms. The long-term outlook for your child depends on a few factors:
Q: What makes Children’s different?
A: We’re home to the first and largest vascular anomalies center in the world. When doctors in other states or other countries need help diagnosing or treating children with rare vascular anomalies such as PWS, they often come to us.
After your child is diagnosed with PWS, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you. Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed. If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too. Some of the questions you may want to ask include:
Treatment for PWS can be intimidating for young children, so we’ve built our treatments around concepts that work for kids. Our entire staff is highly trained and experienced. And more importantly, we’re all dedicated to working with families — to make sure that your child is as comfortable as possible during treatment.
"Don't forget to tell them the rules," 7-year-old Lia DiFronzo says to Amber Soulvie, her Child Life specialist. Read more about how our Child Life specialists help children like Lia.
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.”