Help with 6 yr old with CMTC - Page 2 - Vascular Birthmarks Foundation Forum
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Old 01-26-2010, 03:03 AM
abatie abatie is offline
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Join Date: Oct 2009
Posts: 240

Sorry I haven't posted on this thread in a long time. We didn't get any answers in Dec. but we have gotten many since then at Mayo Clinic. Our daughter is going to be seen again in 6 months. In addition to the CMTC she has some vision issues and three holes in her heart. We are at Mayo again today to meet with the cardiologist about her heart and got good news - she doesn't need surgery right now. I am beinging to think my best source of information is going to be other parents. They are going through it and seeing these kids on a daily basis. Keep asking questions. Keep in touch.
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Old 12-14-2010, 05:45 AM
SamB SamB is offline
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Join Date: Dec 2010
Posts: 2

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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Old 12-15-2010, 03:23 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054

I would also recommend contacting Dr. Levitin via email. He practices in L.A. once per month and might be able to help or direct you to someone he feels has the knowledge
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 01-02-2011, 10:14 AM
Daniel Daniel is offline
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Join Date: Jan 2011
Posts: 7

This video is about kts but this dr also deals with cmtc and is very helpful if you email him
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