Vascular Birthmarks Foundation Forum - View Single Post - Help with 6 yr old with CMTC
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Old 12-14-2010, 05:45 AM
SamB SamB is offline
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Join Date: Dec 2010
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My son is 11 and has CMTC, I ave been through every website etc, etc. All they do is freak you out more and confuse you. My son has been through te ringer wit the " Oh i can figure it out Dr.'s) If you are looking for an absolute diagnoses other than flying to the Netherlands, call Childrens Hospital of Boston, Vascular anomalies center. My Son has been to Mayo at Rochester, Rainbow baby's and like five other childrens Hospitals in the states. Boston's is the only one who actually KNOW's about and can help. The bad thing for me is I live in AZ and its a bit far to commute. As for the Netherlands, Van Lohuizen syndrome, I have even called them and actually almost went. Then I told them I was in communication with Boston after my son had been there for his major issue and they said I was in good hands. Hope this helps.
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