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1994 - 2016
100,000 BIRTHMARKS
100,000 LIVES GIVEN NEW HOPE
Dr. Linda Rozell-Shannon, PhD President and Founder
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Updates from Dr. Linda

Treating Hemangiomas: When to treat, when not to treat

February 13, 2017
Dr. Linda


In this month’s post I will address some of the confusion regarding treatment of Infantile Hemangiomas (commonly called “hemangiomas”).

One in ten children are born with a vascular birthmark, most being a hemangioma. Ninety percent (90%) will resolve on their own. The remaining 10% – roughly 40,000 babies each year – who will need the opinion of a specialist are the children that VBF is most concerned about because of the ongoing questions about if and when to pursue treatment.

 

In 2015, VBF Expert Dr. David Darrow was successful in getting his Guidelines for Treating Infantile Hemangiomas published by the American Academy of Pediatrics. Because the lifecycle for integrating a new treatment practice into everyday care can be up to eight years, these guidelines are not yet in widespread practice. As a result, many babies with a hemangioma are still not being accurately diagnosed or appropriately treated.

 

But parents today have a very strong voice when it comes to the medical care of their babies. You can download the AAP guidelines from our website (here) and provide them to your primary care physician for consideration before beginning a discussion about treatment.

 

Though the guidelines state there is no secret formula for knowing when and how to treat, they do stipulate that a hemangioma SHOULD BE TREATED based upon the amount of skin involved, location of lesion, severity of complications, and potential adverse psychosocial consequences. The guidelines also state that both “parent preference” and “physician experience” should be considered in the decision-making process.
 

VBF pushes for early and appropriate treatment as soon as a hemangioma is diagnosed to prevent future complications – both physical and psychosocial.
 

The old school “benign neglect” philosophy of “leave it alone, it will go away” is not acceptable unless the hemangioma is insignificant and has no potential for being problematic. Thankfully, a huge percentage of hemangiomas are very small, hidden in hair or obscure locations, and need no treatment.

 

There are often “gray area” of lesions that parents want treated but doctors do not want to treat. Again, parents have a right to have the hemangioma treated if they feel that leaving the lesion may result in physical or psychosocial issues for the child.

 

Be reminded that 70% of all hemangiomas left untreated will leave a redundant sagging chunk of tissue behind. If corrective surgery is deferred until after the hemangioma has completely involuted, which is around age 10, insurance will routinely deny coverage because too much time has gone by since the diagnosis.

 

A hemangioma that is ulcerating, bleeding, potentially obstructive to vision or airway, or rapidly growing, must be treated as soon as possible. 

 

The gold standard for treatment is an oral beta blocker; the FDA approved version is called HEMANGEOL. A topical form of beta blocker is used for flat, newly emerging lesions. Laser is very effective with early lesions and, when combined with topical beta blockers, can knock a newly emerging hemangioma off course.

 

Surgery is used when the lesion does not respond to other therapies or when it is severely problematic and there is no time to wait for the hemangioma to shrink. Surgery is also used when the lesion is in a critical location, such as the nasal tip or breast bud area. A beta blocker can effectively shrink these lesions but they must be treated sooner, rather than later, to prevent underlying problems. Orbit hemangiomas must also be treated as soon as possible to prevent astigmatism.

 


MORE INFORMATION

Parents of a child diagnosed with an Infantile Hemangioma can find additional information in the Hemangioma Information section of the VBF website.  It is critical that you be informed and get the most accurate and up-to-date information about diagnosis and treatment. Trust your instincts if you feel “something’s not right,” and never hesitate to reach out to VBF with your questions.  We’re here to help.

 

 


 

Early Intervention

January 9, 2017

Dr. Linda Rozell-Shannon

 

Dr. Linda of FacebookHow soon should my child start treatment for their vascular birthmark? That is one of the most common questions VBF receives. This topic is so important that I hosted the first FACEBOOK LIVE WITH DR. LINDA on January 9th regarding this very topic.

 

Infantile Hemangiomas and the Port Wine Stains are the two vascular birthmark types that most parents write to us about regarding early intervention.

 

For the Infantile Hemangioma, it is critical that an accurate diagnosis be made and that treatment begins at or around the four-week well baby checkup. Why? Because this is when the “map” of the hemangioma is usually fully present and it is the best time to try to abort the growth. Most doctors have been trained to “ignore” these lesions and to tell the parents to “leave it alone, it will eventually go away.” However, this philosophy, which is referred to as “benign neglect,” is contrary to the mission and purpose of not only the VBF, but to many of the treatment experts that work with us.

 

Most parents have an instinct or “still small voice” that tells them something is “not right.”

 

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100,000 Strong!

December 7, 2016
by: Dr. Linda Rozell-Shannon

 

Christine ShannonIt goes without saying that every child is special. But for me, every child with a vascular birthmark is extra special. Ever since 1994, when my daughter Christine was diagnosed with a hemangioma, my life has been focused on helping every family affected by a vascular birthmark. That’s why I founded the Vascular Birthmarks Foundation (VBF), to educate affected families and treatment experts about the latest information regarding the diagnosis and treatment of these often complex lesions. No one was there for me in 1994. Because of that, I vowed to God that I would dedicate my life to this cause, so that no parent would be alone on this journey. That was 22 years ago. Today, I am proud to announce that the vow I made in 1994 has resulted in the most amazing event in VBF history.

 

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