Vascular Birthmarks Foundation Forum - View Single Post - new and wanting some advice
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Old 02-13-2008, 08:43 PM
quinnysmom quinnysmom is offline
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Join Date: Jul 2006
Location: sault ste marie, ontario Canada
Posts: 16
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Hello

Please ask for the MRI to be done to rule out a disorder called PHACES Syndrome. All children with large segmental hemangiomas on the head and neck MUST and should be evaluated for PHACES. It is an uncommon disorder but it is very important to rule it out. Children with hemangiomas on the ehad and neck can have vascular anomalies which put them at risk for other issues.

PHACES can be very mild (in many cases) or it can be more complicated. Most of what you will see online is about children with complicated cases (such as my son's) but there are many more children who do very well.

Please inquire about seeing a specialist or vascular anomalies clinic so that she can be evaluated.

I am not telling you this to scare you just so that you are informed because not all doctors are aware of PHACES yet.

Please contact me if you need more information

Jen Mom to Quinn (21 Months PHACES)
jennifer duncan @ phaces association.com (no spaces)
www.phacesassociation.com
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