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There are many ways you can help children and their families get the care they need.
Children with Parkes Weber syndrome (PWS) often need multidisciplinary care. Some specialists your doctor may recommend for your child include:
While there is no cure for PWS, the symptoms of the condition can be managed.
Your doctor may recommend that your child wear these tight-fitting items 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.
If your child’s legs are slightly different lengths (less than one inch difference), a heel insert can help your child walk normally.
Your doctor may recommend various pain medications and antibiotic medications for your child.
Surgeons can perform what's called a debulking procedure, during which abnormal vessels and some of the overgrown tissue are removed.
If PWS affects the foot or leg, sometimes the limb can become excessively large. Should that be the case, your doctor may recommend an operation. For instance, an orthopedic surgeon can reshape your child's foot if it cannot fit into a shoe.
Sometimes in PWS one leg grows longer than the other. Orthopedic surgeons can estimate how long a child's leg will be when she is fully-grown. If it appears the difference will be more than an inch they may recommend a procedure called epiphysiodesis. This procedure, which is usually done when a child is between 10 and 14 years old, interrupts the leg's growth plate and stops the leg from growing when it’s reached a certain length
A specialist called an interventional radiologist can inject a substance that eliminates the abnormal connections between your child’s arteries and veins.
Laser treatments can help lighten your child’s capillary malformation, and speed healing if your child’s lesion begins to bleed.
Depending on your child’s symptoms and the progression of the disease, we may also bring in:
PWS is a progressive condition, which means that it will grow as your child grows. The long-term outlook depends on a few factors:
Depending on the severity of your child’s PWS, your doctor may recommend a series of follow-up visits to check for complications and make sure that we’re managing the PWS effectively.
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.”