Hello all. I am thankful for any insight or information anyone has to share. I have a 13 month old son who popped up with a lesion on his wrist a couple weeks ago. I took him to the pediatrician who diagnosed him with a hemangioma. However, this diagnosis does not seem correct to me, as it has not been there since birth and only has developed in the last week or so for my 13 month old. We are now scheduled for dermatology next week. Attached are photos. To me this looks like a VM, but possibly an AVM as we do not know if it’s high flow vs slow flow. I believe we will need an ultrasound to determine that? Any insight would be so appreciated. This is very new territory for us. Thank you!
Hi, I am 51 have have had diffuse vasular lesions in my left arm since childhood. I have been to many types of doctors for this condition. The one thing I can tell you is that this condition requires a multi disciplinary advice and the best way to get that is to seek out a Vacular Anomalies clinic at your local Children’s hospital. They know so much more about these issues than when I was a kid. Here in LA, even though I am an adult I check in and am seen by the Vascular Anomalies clinic at our children’s hospital periodically to check in about any new developments in treatment and they point me towards practitioners who treat adults who know about the problem. (Example, they referred me to an oncologist for treatment with Sirolomious after a recent visit. I would have never known he has knowledge about the condition but he was a teacher of one of the attendings at the Vascular clinic.) A team like this could include attendings, surgeons, interventional radiology, dermatology, etc. You want people who know the idiosyncrasies of the condition. Also FYI, sometimes the best treatment is no treatment. I have two surgeries on my wrist as a kid that I think were prob not the best idea knowing what I know now. There is some thought that interventions like surgery and and interventional radiology can sometimes make things worse. This condition is so rare that you have to make sure you have doctors with experience in it.
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Kris, thank you so much for your reply. We are in the Philly region and are seeing drs at Children’s Hospital of Philadelphia, so I’d hope they would be able to offer us the type of care that you describe in your message. From my understanding (which is limited) these can be very complex. Hoping to get some more answers soon.
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I agree with Kris’s advice. My daughter has a vein to vein malformations in her left hand, wrist, and arm. I have an AVM in my brain. Initially she was diagnosed with a hemangioma, but finally was referred to the vascular clinic at the children’s hospital. She’s 24. It eventually diagnosed and treated. She started with Sirolimous and now takes Vijoice.