hi there, we first attended great ormond street in march this year, bloods and an ultrasound were done then, the doctor said the bloods indicated that it may be a tufted angioma but his clotting levels were fine! the tufted angioma was confirmed by an incision biopsy in July, but I haven't got another appointment until October, the doctor offered no treatment or anything for pain control, as my son is so young she said it's hard to tell if he is in pain! but if I catch the angioma when dressing him or picking him up he gets very distressed.
I feel very isolated and feel guilty for worrying as doctor said it could have been much worse. I can't find anyone in this country to speak to and cannot afford to go abroad.
I really don't know anything about the implications of the tufted angioma but was lead to understand that he doesn't have the other complication that goes with this???