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-   -   3yr old with cm-avm (http://birthmark.org/board/showthread.php?t=6489)

Ginorocco1 08-15-2013 02:55 AM

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?

missy 08-15-2013 04:12 AM

Hi and welcome!

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

Where are the new ones popping up?

Missy

Ginorocco1 08-16-2013 02:35 PM

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

Ginorocco1 08-16-2013 02:48 PM

Also his lip seems to be growing back:(Dr. 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?

dancermom 08-29-2013 07:32 PM

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.

Rickey65 12-25-2013 06:57 AM

I will join very soon.

lnwpen88 10-18-2014 09:47 AM

I am happy to join in soon.

Gclub


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