3yr old with cm-avm - Vascular Birthmarks Foundation Forum
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  #1  
Old 08-15-2013, 02:55 AM
Ginorocco1 Ginorocco1 is offline
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Default 3yr old with cm-avm

My 3 yr old was just diagnosed with cm-avm after his lower lip was debulked because of a vascular malformation! He has multiple vascular markings with new ones popping up working at chop in pa! So confused and sad! Any help?
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Old 08-15-2013, 04:12 AM
missy missy is offline
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Hi and welcome!

Does he have a treatment plan in place? What are you expecting next?

Where are the new ones popping up?

Missy
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Old 08-16-2013, 02:35 PM
Ginorocco1 Ginorocco1 is offline
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That is the thing the dermatologist at chop send us a letter saying follow up in a year! No avm's in brain and meeting with neurologist and plastic surgeon on sept 12th! No one seems to want to give us a treatment plan.... The new mark is on his arm. I was wondering what treatment plan is out there? Thanks so much
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Old 08-16-2013, 02:48 PM
Ginorocco1 Ginorocco1 is offline
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Also his lip seems to be growing backDr. Low his plastic surgeon said he will probably need multiple surgeries! Also he has a bicuspid valve and aortic stenosis. When doing his yearly echo they found an extra vessel near his heart! He has obvious external signs and now internal signs of this condition. I was wondering if anyone knows of any type of treatment to stop marking from popping up?
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  #5  
Old 08-29-2013, 07:32 PM
dancermom dancermom is offline
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Ginorocco1, please join AVMSurvivors and join our facial avms group. There are 200 or so facial avmers on the site with a handful of CM/AVM members. We can help you through this.
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  #6  
Old 12-25-2013, 06:57 AM
Rickey65 Rickey65 is offline
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I will join very soon.
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