Parkes Weber syndrome
Treatment & Care
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 Children’s Hospital Boston 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.
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.
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.
- compression garments — Your doctor may recommend that your child wear these tight-fitting pieces of clothing on the affected limb to reduce pain and swelling. They can also help protect your child’s limb from bumps and scrapes, which can cause bleeding.
- heel inserts— If your child’s legs are slightly different lengths (less than one inch different), a heel insert can help your child walk normally.
- other medications — Your doctor may also recommend various pain medications and antibiotic medications for your child.
orthopedic surgery — PWS can cause your child’s foot or leg to become excessively large; in some cases your doctor may recommend an operation.
- An orthopedic surgeon can reshape your child’s foot to help him fit it into a shoe.
An orthopedic surgeon can perform a procedure called epiphyseodesis, which interrupts the growth plate and stops the leg from growing when it’s reached a certain length.
- We’ve got great orthopedic surgeons who can estimate how long your child’s leg will be when it’s fully grown. Then, when the affected leg reaches that length, they perform this procedure to stop it from growing longer.
- This helps keep your child’s legs approximately the same length.
- We only perform epiphyseodesis if the expected difference between the length of your child’s legs is greater than an inch — and typically the operation is done when your child is between 10 and 14 years old.
Other surgeries — Your doctor may recommend one of these other surgical procedures if your child’s symptoms call for it.
- A surgeon can also help reduce the size of your child’s affected limb with something called a debulking procedure.
- embolization — To help shrink your child’s abnormal vessels and reduce bleeding and the risk of heart failure, your doctor may propose the injection of a substance that eliminates the abnormal connections between your child’s arteries and veins. One of our experienced interventional radiologists can perform this procedure.
- laser therapy— Laser treatments can help lighten your child’s capillary malformation (“port-wine stain”). Laser treatment can also speed healing if your child’s lesion begins to bleed.
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.
- Supportive care involves preventing and treating infections and side effects of treatment to keep your child as comfortable as possible while we’re working to manage the symptoms of PWS.
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:
- plastic surgeon
- general surgeon
- interventional radiologist
Depending on your child’s symptoms and the progression of the disease, we may also bring in the following specialists.
- physical therapists — PWS can affect your child’s arm or leg, making it hard or painful for your child to move it. A physical therapist can help ease the pain and increase your child’s range of movement.
- occupational therapists — Children with PWS sometimes get behind on developing motor skills because of physical problems related to the disease. An occupational therapist can get your child back on track.
- counselors — One characteristic of PWS is the typically large capillary malformation (“port-wine stain”) on your child’s skin. As your child gets older, he or she may be uncomfortable with that skin lesion. One of our counselors can help your child deal with the psychological and social issues related to having a birthmark.
Coping and support
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:
- getting to Children’s
- navigating the hospital experience
- resources that are available for your family
Our Vascular Anomalies Center (VAC) offers links to organizations that offer support and education for parents who have a child with a vascular anomaly.
|Our patient-centered approach means that we want your child to not only get better, but also feel good along the way. Throughout the hospital, you¹ll find clinicians trained in therapies that can make your child feel more comfortable, learn to shift focus away from pain and enjoy some peaceful moments during what may be an anxious time. Read more about how acupuncture, guided meditation, guided imagery, massage, Reiki and therapeutic touch could help your child.|