Originally Posted by pathfinderjd

Hello. I am new here. I have been stalking this forum off and on for months now. I come. I read. Somtimes I leave inspired. Some times I leave in tears. Knowing we are not alone brings happiness and sadness. I am happy to have a community to fall on. But so heartbroken that anyone has to deal with this.... I have a 10 year old daughter who has had CRPS for 8 month, 2 weeks....not that we are coounting. ;-) We have seen othro, pain, PCP, osteopath, accupuncturist, OT, PT... I think that covers it. We now homeschool. She has been on steroids, gabapentin, and pain medication. For the first 10 weeks, she did not sleep. The gabapentin did give her some help with that. However, over time it became clear the side effects were not worth that benefit. Nothing else seems to help. The first PT folks we saw were with a children's hospital. I expected great things. They told her it was all in her head and to stop "burdening" me with the fake pain. So, I lost it on them and we left. The ortho and the accupucturist both told us they could do nothing else for us. Ortho sent us to a surgeon. I cancelled that appointment. Did research and decided that was of no use. Saw a new doctor. He had the audacity to tell her she would live with this forever. So, now she is depressed. Getting OT now. Was getting it 3 times a week. Saw improvement. But insurance will not cover that much. Now down to 1 time a week and that seems to be making it flare back up. Other kids her age don't undertsand, so she is isolated. Pain seems to be getting worse. Cries herslef to sleep at night. We are working on getting in to an inpatient rehab program. (Looking forward to fighting with the insurance on that one. NOT!) Looking into options for CBD oil. Cannot find a safe, monitored place to get it for a child. Anyone have anything to share in this area? Willing to travel within continental US. We are currently in the southeast US. We are a stronger family than we were 8 months ago...but man life is so different. There are things I took for granted.