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There are many ways you can help children and their families get the care they need.
Undoubtedly, you were distressed when you learned that your child has Parkes Weber syndrome (PWS). That's understandable — there is no known cure for PWS and it can be complicated to treat.
However, you're in the right place. The specialists at the Vascular Anomalies Center at Boston Children's Hospital have seen and treated kids with PWS, so we understand more about this rare condition — which means that your child will get the best care from the most experienced physicians.
And at Children's, we view the diagnosis as a starting point: Now we're able to begin the process of treating your child — with all the means at our disposal — so that we may effectively manage the condition and allow your child to have a healthy life.
How is Parkes Weber syndrome treated?
PWS is a complicated condition, and it affects different kids in different ways.
Because there is no cure for PWS — and it's a progressive condition — we believe that treating your child's symptoms is the most effective way to manage the disease.
So what kind of treatments are there?
They fall into several categories, which we've outlined below.
What kind of support will we get?
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.
We want to maximize the safety and effectiveness of whatever therapy you and your child's doctor decide upon.
Continual follow-up care
Your child's physician and other members of your care team will work with you to set up a schedule of follow-up visits.
Children with PWS often need multidisciplinary care. Some specialists your doctor may recommend for your child include the following:
Depending on your child's symptoms and the progression of the disease, we may also bring in the following specialists.
We understand that you may have a lot of questions when your child is diagnosed with PWS. How will it affect my child long term? What do we do next? We've tried to provide some answers to those questions in the following pages, but there are also a number of other resources to help you and your family through this difficult time.
Patient education: From the first office visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have — What kinds of treatment are available? What do we do about the pain? They will also reach out to you by phone, continuing the care and support you received while at Children's.
Parent to parent: Want to talk with someone whose child has been treated for PWS? It's a very rare condition, but we may be able to put you in touch with other families who can share their experience.
Faith-based support: If you are in need of spiritual support, we will help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy 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 hospital experience.
Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
On our For Patients and Families site, you can read all you need to know about:
Our Vascular Anomalies Center (VAC) offers links to organizations that offer support and education for parents who have a child with a vascular anomaly.
Watch a short video of one of our surgeons describing the various surgical procedures used to treat kids with PWS and Klippel-Trenaunay syndrome. (Requires RealPlayer)
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.”