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Beckwith-Wiedemann Family Forum Q&A

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The Beckwith-Wiedemann Syndrome and Isolated Hemihyperplasia Research Team

Questions that a parent might ask:

• What exactly is BWS?
• Why did my child get this? Did I do something?
• What features are associated with BWS?
• How can I tell if my child has BWS?
• Is there anything I can do to prevent my child having BWS? Is there any way to know ahead of time?
• What risks does my child face?
• What do I need to do?
• Where can I get genetic testing done?

A Glossary of BWS Terminology:
Terminology (A-L)
Terminology (M-Z)

Our site in other languages:

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Stories/Kids Corner

Tips

• AFP Levels

• Asymmetry Tips

• Breastfeeding

• Colic

• Constipation Tips

• CT Scans

• Cysts

• Dry Tongues

• Feeding Tips

• Flights - Preventing Earaches /Popping

• Insurance Tips

• Jaw Surgery

• Pacifiers

• Reflux

• Teething

• Teeth Work

• Tongue Surgery - where and when

• Tongue Surgery - how to plan ahead

• Trach Care

• Ultrasounds - keeping your kids still      

• A Note From Dr Beckwith - long-term prognosis

• Notes From Doctor Choyke: (1) Scans and What to Look At; (2) Fasting Before Ultrasound Scans

• Common Questions for the Surgeon About Tongue Reduction for Individuals with Beckwith-Wiedemann Syndrome (BWS) - From Dr Marsh

• Screening Protocol -  From Dr Debaun

• How to Choose a Health Care Provider

Links to Other Sites of Interest

If you'd like to visit the discussion group before joining, you can do so by following this link:

Beckwith-Wiedemann Family Chat Forum