Parkes Weber syndrome
Diagnosing Parkes Weber syndrome (PWS) can be difficult for many physicians simply because it’s such a rare condition. The specialists at the Vascular Anomalies Center at Children’s Hospital Boston can easily identify PWS — and begin treatment to help manage your child’s symptoms.
How is PWS diagnosed?
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 one or more of the following imaging tests, which can help determine the correct diagnosis and the appropriate next steps in treatment:
- magnetic resonance imaging (MRI) — This high-resolution scan shows the extent of the hypertrophy of tissue and gives your doctor information about what problems it may be causing.
- ultrasound (also called ultrasonography) — An ultrasound helps your doctor see your child’s vascular system to examine abnormalities and determine how much blood is flowing through the arteriovenous malformations.
- computerized tomography scan (also called a CT or CAT scan) — A CT scan shows detailed images of the area affected by PWS and is especially helpful for evaluating the bones in the affected limb.
- angiogram — In this study, an interventional radiologist injects a dye into your child, giving doctors a detailed view of the blood vessels in the affected limb.
- echocardiogram — An echocardiogram allows your child’s doctor to check the condition of her heart.
After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options.
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