Sorry I haven't responded - haven't been here for a few days. I should tell you that in my practice I treat mostly adults and have never had a patient with this diagnosis. Nor have any of my colleagues. So I too am thinking this through and learning as I go. Though I do have an understanding of the anatomy and biomechanics.
There are times that I refer to chiro and I have used chiro in the past myself. However, in this instance I wouldn't imagine it would help. This is what I consider a "fixed deformity" - meaning there is nothing short of surgery that will change the fact that the bones are fused. Therefore the joint can not be manipulated. I wouldn't think manipulating the surrounding joints would be helpful as they are likely hypermobile to compensate for the fusion.
PT might help if he has significant muscle shortening and or weakness. My son does not have either tightness or weakness. My son does also limp, but complains only of minimal pain. The other thing that might help is a custom (or off the shelf) arch support. I believe this is how they conservatively manage the condition.
I would love to conservatively manage this with my son and I think that the Children's Hospital in Boston will if they can. However, my concern as a PT is that the "limp" or gait deviation will lead to excess wear and tear on the other joints. I guess you can think of it like a car that is need of an alignment with asymetrical wear on the tires. Don't get me wrong we are not all perfectly symetrical people, but when people have a "significant" deviation from the normal in bony alignment they will get premature arthritis in surrounding joints. So I guess the million dollar question is how and when to decide when surgery is indicated. Does your son complain of any lower extremity or back pain? My son does not but I worry that waiting for significant pain will be an indication that he is already abusing other joints. How active is your son? My sons is very active and gets great enjoyment from the sports he participates in.
We will be seeing the foot specialist on August 26th and I will let you know what I learn after that visit. What does your ortho doc recommend? Do you have confidence in his/her skills and recommendations?
Lets keep in touch