My now-7-year-old was diagnosed with a facial AVM at around 18-24 months. It affects the left side of her face, mainly the inner and outer cheek and the gums and jaw. When she has a new tooth erupt a pyogenic granuloma (excessively vascular non-cancerous tumor) grows up and over the emerging tooth until the tooth has fully emerged and surgery is possible. It has so far only occured with her molars. She has had 4 surgeries to remove these tumors and expose her teeth as well as a series of cts, mris, ultrasounds, and an angiogram with sclerotherapy (after which the doctor told us he was unable to find anything to embolize). Usually with these surgeries, her bleeding stops as soon as she is out of the OR, but recently the area that was treated by her first surgery has started randomly bleeding again. This time there is no visible growth and it only occurs maybe once a month for a brief time so it is really hard to determine why it has started bleeding after so long. Her surgeon has referred her to an oncologist and is looking to get her preauthorized to take trametinib. Has anyone taken this medication for an AVM and if so what has your experience been?
I found this study to show success if she has a MAP2K1 gene mutation.