How is your daughter doing now? How are you feeling now that you have had some more time to digest the information?
My son is 10 years old and was diagnosed with numerous different things before we found out that he has multiple VMs throughout his right neck, shoulder and throat. It took 4 years of searching (ages 5 to 9) to get the right answers. He started sclerotherapy treatments this past year in March and has had 3 so far. His "symptomatic" VMs are being treated in this way...by symptomatic I mean the ones that are causing him pain (due to clots), discomfort and are cosmetically an issue as well.
What is known about VMs is that they tend to grow when your child grows, especially during times of hormonal change, as well as when they are sick. We kicked ourselves for not being more aggressive with seeking out answers over the 4 years of questions, even though the poor kid saw tons of doctors, for if we had found answers sooner, his treatments could have been less since the VMs would have been smaller. However, the sclerotherapy is doing wonders for him (he has about 2 more treatments to go) and he is feeling much better. We are confident that the treatments are being by the right doctor at the right hospital (Toronto, Canada) and are at peace with things now. I am grateful that we found our answers prior to the onset of puberty....a difficult age at best, but not fun I imagine if you are in more pain and discomfort, and feeling more selfconscious about your appearance than your average kid.
Hope all is well with you and that you are finding the answers you need.
Feel free to join us at the other support group (I am sorry, I don't check the posts here very often) at http://groups.msn.com/vascularbirthmarksupport
. Corinne, the manager there, is wonderful, and I notice she has replied to you here as well!!