So - if you've found this because you have someone with an Infantile Digital Fibromatosis diagnosis - I'd just like t update you on where we are - the history is below.
Will is now 4 years old. He has two tumors due to the incision and cut during his excision. We are under the care of an upper extremity specialist - and under his advice, we're just watching it for the time being.
It currently does not restrict movement and is not affecting bone development. He tells me that all of his research points to it taking up to 10 years for these to spontaneously resolve. Will's tumors are not growing any further at this time (at about 2.5 cm) but are also not decreasing in size.
We have considered Moh's excision, however for something of this nature, it's a lengthy procedure and not one that he's likely to sit through well - also not something you want to anesthetize for that length of time.
So - we wait. That's basically all there is. I can tell you that the tumor is more sensitive than the rest of his hand. If he say - slams it in a door - or gets it caught somehow (which does happen) it hurts more than if it were another finger. There is a lot of crying. But at this time, we don't see any additional tumors or growth.
I will try to get a picture of it tonight to post, in case anyone wants to see it.
I will also gladly answer any questions that I can if you're a mom or dad who is dealing with this diagnosis!