Thanks for the caring replies
I guess I should clarify a wee bit, but didn't want to overwhelm my original post with too many details:
The accident happened while visiting my sister and family across the country, and our initial treatment was with a different children's hospital on the east coast. We didn't return home until Christmas time. We stayed so long for severally reasons, partially to manintain a continuity of care for the girls, partially to remain near my sister who lost her youngest two children that horrible day, and partially because home isn't accessible and they required wheelchairs for quite a while.
We were referred to The Hospital for Sick Children in Toronto for follow-up, and it was this new ortho team who indicated the pins would only be removed if they caused problems. At that point, I was rather baffled since they have always been problematic. Our last appointment with the original surgeon still had removal in the plan. But the news was delivered by a resident we'd never met before, and we had the appointment at the Pain Clinic a few weeks thereafter. So I decided not to persue anything until we'd met the pain team.
During that marathon assessment where she was diagnosed with CRPS, the idea that surgerical pin removal may not ease her pain came up, because surgical aggravation may cause the CRPS to spread. I obviously only want her to have relief, and not unneeded surgery. But we were previously lead to believe relief would come with pin removal once she was ready -- not to mention preventing other complications should the bone grow over the internal pins etc. And I hadn't even thought about CRPS going there without surgery...
I am honestly not sure whether the ortho not wanting to remove the pins had anything to do with CRPS. She hadn't yet been officially diagnosed, but completely fits the profile and was encouraged towards desensitization training prior to our retruning home. I sort of assume the head of orthopedics in one of the world's top childrens hospitals might recognize CRPS, even though a lot of doctors do not.
The pain team left it with me, indicating that although she'd been orthopedically discharged, she could be seen there again if need be. We go back to the pain clinic in July, and I am just trying to learn about the Dx so I can do right by my daughter.
She also has a delayed union of her tib/fib in the CRPS affected limb. But the femur fracture where the pins are causing the knee pain is healed. I was thinking of contacting our original care team to get an opinion... I must admit we were spoiled there. The original accident received a lot of attention and my girls had arrived via air ambulance which thankfully isn't a common sight. They fairly amazed hospital staff with their progress. Not only on the ward, but everyone from xray/casts to the coffee shop knew my girls and wished them well. It was really great to feel so well cared for.
Now that we have new doctors at a bigger hospital and are well beyond the acute phase, they seem more numbers than children
She also had a traumatic brain injury, which resolved without surgery, but adds another layer of complexity to her treatment. She's doing well now, but initially required intubation so it was pretty severe. It's hard to tell if some of her behavioural issues are related to the TBI, the pain, or normal puberty...
The pain team seems pretty good though, fingers crossed! She's had 2 more physio appointments since diagnosis, and the PT did a consult with the pain team to change her routine somewhat and get on the same page. Right now, I am happy to report she has been outside with friends most of the afternoon! She came home briefly to take her gabapentin (which tells me it's helping or she would have likely "forgotten") and was out the door in a flash to enjoy the lovely weather we are having.
It has also been recommended we get some more counselling, so we are looking into that as well. Has anyone found CBT helpful?
Thanks again!