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There are many ways you can help children and their families get the care they need.
Our treatment team focuses on giving hope to patients with Gorham-Stout and their families. Our pioneering work with investigational therapies has successfully halted or reversed the course of this progressive bone disease in most patients participating in our clinical studies.
Your child’s specific treatment plan depends on several factors, including the part of the body affected, severity and progression of the disease and related complications.
Treatment options may include:
Throughout the 20th century, the standard treatment approach for Gorham-Stout was palliative care to relieve the patient’s symptoms. Surgeons often performed orthopedic surgeries to stabilize bone that would further break down months or years later.
Today, anti-vascular and immunosuppressant medications have proven effective for slowing and even reversing the damaging effects of Gorham-Stout. Boston Children’s offers a clinical protocol using these medications, which target the lymphatic vessels that grow abnormally and disrupt the body’s normal bone regeneration process.
Our clinical studies include these medications:
Read more about Gorham-Stout research.
Surgery alone cannot cure Gorham-Stout. However, your child’s physician may recommend a surgical procedure to stabilize or remove affected bone, or to treat symptoms and complications related to the disease.
At Boston Children’s, we may recommend surgery in conjunction with or after a drug therapy course has successfully stabilized the disease. Surgical outcomes are improved when the disease is under control at the time of surgery.
Surgical recommendations may include:
Your child’s physician may recommend radiation to treat the symptoms of Gorham-Stout, such as pain. Radiation is also an effective treatment for complications of the disease, such as chylothorax, a leakage of lymphatic fluid into the chest. Due to delayed side effects of radiation therapy, we do not recommend radiation as first-line therapy.
Our patients benefit from a comprehensive team approach that involves multiple specialists working together to develop customized treatment plans. You and your child can meet with our team during a dedicated clinic day, which allows you to ask as many questions as necessary to fully understand our recommended course of treatment.
As part of the Boston Children’s Vascular Anomalies Center, our experts include:
Meet our Vascular Anomalies team.
We offer second opinions and consultations for patients living across the U.S. and around the world. If travel prohibits you and your child from receiving ongoing care on-site at our Boston hospital, our experts are available to evaluate your child and consult with a local physician to recommend the best treatment course.
Our weekly VAC conference gives you and/or your child’s care team access to our Gorham-Stout experts – without the need to travel to Boston.
To submit a case for review, read more about our VAC conference.
If your child is an international patient, learn more about making an appointment through Boston Children’s International Health Services.
Reviewed by Cameron Trenor, MD, © Boston Children’s Hospital
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.”