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Macroglossia

Macroglossia, or enlargement of the tongue, is one of the hallmark features of BWS. It affects approximately 90 percent of children with BWS.  If left untreated, macroglossia can lead to dental-skeletal deformities including open bite, cross bite, and jaw problems.  Other features of BWS include ear pits or creases, nevus flammeus (port-wine stain) on the nasal bridge or neck, abdominal wall hernias or anomalies, and hemi-hypertrohpy (enlargement of one side of the body).

 

Surgical Treatment for Macroglossia at Nicklaus Children’s

The surgical program for the treatment of macroglossia (enlarged tongue) at Nicklaus Children’s is highly respected and is one of the few hospitals in the world with a team specializing in what is often called the W-cut procedure, also known as an anterior lingual tongue reduction. While many patients come to Nicklaus Children’s from throughout the country and the world.  
 

Ongoing Care Management

Children with BWS need to be screened regularly for malignancy as they are at an increased risk of cancers, including Wilms' tumor (nephroblastoma), pancreatoblastoma and hepatoblastoma.  Screening protocols may vary, but on average, children should have an abdominal ultrasound every 3 months until at least eight years of age and a frequent blood tests every year to measure alpha-fetoprotein (AFP) until at least four years of age. This risk typically dissipates after childhood.
Ongoing screening protocol includes:
  1. AFP blood test every 6 weeks from birth to 4 years old
  2. Kidney and Liver ultrasound every 3 months from birth to 8 years

BWS Family Conference

June 24 – 26, 2016
For more information and how to register please contact Kristen, BWS Coordinator at kristen.burr@mch.com
 
For more information about the Center for Beckwith-Wiedemann Syndrome at Nicklaus Children's Hospital, please call (305) 278-5923 or e-mail Kristen Burr, BWS coordinator at kristen.burr@mch.com.


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