I read an article posted through the rare disease support group that was talking about appendage swelling in a child with an atypical venous structure. Although this child's rare disease is much different than Matthew's, some of his symptoms sound a bit familiar. Matthew has swelling in an appendage and an atypical venous structure (found during his heart cath). We probably shouldn't ignore it anymore. So, we went to see the pediatrician to start the investigation.
First, urine test to check kidney function. Thankfully, okay. Second, ultrasound to rule out blood clots. Thankfully, okay. Now the issue is what is next. No specialty claims the peripheral vascular system as their own. Our wonderful pediatrician is trying to find the right person to see next.
I don't want to dismiss this as 'just another Matthew uniqueness' until we know that it won't have any long term implications. In the article I read, the parents were searching for a doctor to help them, because the doctor they were seeing recommended amputation. I can't imagine that Matthew's uniqueness would lead to that, but I want to make sure we are being diligent now so that we don't have to do something drastic in the future.
|Matthew's unique (and a bit swollen) foot.|