Frequently Asked Questions
My child was just diagnosed with PVS. How do I know where they fit into the spectrum of the disease?
Getting a new diagnosis of PVS can be frightening. Internet sites and social media can sometimes lead to confusion as to where your child's diagnosis fits into the spectrum of the disease.
PVS can be an unpredictable disease in that it is hard to know which children will have progressive disease involving multiple pulmonary veins or if they will have stable disease that will be limited to one pulmonary vein.
It is always important to engage in conversations with your child's pediatric cardiologist to better understand your child's diagnosis of PVS. This site will provide you with some information to help understand the disease, tests and treatments.
Risk factors identified in the literature that may signify more significant disease include bilateral pulmonary vein involvement ( involvement of lungs in both the right and left lung), prematurity, an additional diagnosis of congenital heart disease and pulmonary veins that have small diameters out in the lung.
PVS can be an unpredictable disease in that it is hard to know which children will have progressive disease involving multiple pulmonary veins or if they will have stable disease that will be limited to one pulmonary vein.
It is always important to engage in conversations with your child's pediatric cardiologist to better understand your child's diagnosis of PVS. This site will provide you with some information to help understand the disease, tests and treatments.
Risk factors identified in the literature that may signify more significant disease include bilateral pulmonary vein involvement ( involvement of lungs in both the right and left lung), prematurity, an additional diagnosis of congenital heart disease and pulmonary veins that have small diameters out in the lung.
Why do certain hospitals only offer certain treatments?
PVS is a rare disease and so many institutions see less than 10 children with PVS within a year. Currently, there are no consensus guidelines to guide management for PVS and this can lead to different practices at each institution. There are specific centers that have a special interest in PVS and typically have areas of expertise, which may influence practice.
Through sharing of data within the PVS Network, we hope to better understand practices at individual institutions and share knowledge. Through collaboration, we hope to provide consensus guidelines to help guide practice.
Through sharing of data within the PVS Network, we hope to better understand practices at individual institutions and share knowledge. Through collaboration, we hope to provide consensus guidelines to help guide practice.
Where can I get a second opinion?
Anyone is free to get a second opinion. The institutions participating in the PVS Network are centers interested in advancing care for children with PVS.