Vascular Birthmarks Foundation Forum - View Single Post - Does anyone know much about Tufted Angioma and KHE?
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Old 01-22-2010, 01:18 PM
hdormer hdormer is offline
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Join Date: May 2009
Posts: 1
Default Khe

hi,
i saw your post. my son was diagnosed with KHE just a few weeks after he was born. lucked out and live near boston so saw one of the experts on these things. my son's KHE has never had any platelet trapping issues so that has been a blessing. i'm told they usually do. he has been treated however. our doctors felt it was best to treat it now to avoid any pain issues as he grows older. he has been on steroids and now is on chemotherapy called vincristine. the khe has improved over time. he's almost 9 months old now. he seems to have tolerated both treatments fairly well. i think he will be having another MRI soon to see the internal progress. it's kind of a strange diagnosis because so few people have heard of it or treated it. it can be confusing and scary. i know how you feel. best of luck to you. feel free to contact me anytime. my email is dormerfamily@verizon.net.
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