My son is 2 1/2 and was diagnosed one year ago with a tufted angioma on his lower leg after a surgical biopsy. He now appears to have a new tumor on the inside of his knee on the same leg. It is following the same pattern as the first - appears like a bruise but "spreads" then has a little tumor inside. I think that we are catching this one much earlier though b/c we don't assume that a bruise is a bruise anymore (although at this age he is constantly covered in bruises!). I pressed on the spot and he did not even flinch, so I am pretty sure it is not a bruise. When I called our doctor, he said it was probably the same tufted angioma. That concerned me b/c the other one is on his shin - which means that it goes from his shin to the inside of his knee. He has complained of knee pain off and on over the past couple of weeks, but not near where the new or old birthmark appears to be. He isn't three yet, so it is hard to know how well he is communicating the location of the pain. Also - he has a cafe au lait spot that was present at birth. No one seems to think it is related to the tufted angioma, but I thought I would mention it.
I know that tufted angiomas are pretty rare - but does anyone have any experience with this? When we received the diagnosis and the tumor seemed smaller on follow-up, we thought that was the end - he would not have any more tumors.
We are at one of the top childrens hospitals, and I fell that we are getting good care. I could not get an appointment for 6 weeks, though, so I am interested in some real life experience in the meantime. Thanks.