We saw the immunologist at CHOP this morning and she spent 90 minutes going over Phoebe's entire health history, labs, biopsies, symptoms, and did a thorough physical exam! What she said still has me crying tears of joy and hope!
She has a plan!!!
She thinks there are a few rare issues going on with Phoebe that have been causing the issue with getting a definitive diagnosis.
She wants to do some repeat testing on the levels that are the most worrisome and she wants to do more detailed testing including a complete genetic work up! She said the genetic work up will be a fight with insurance because it runs about 20k, but she said "If you are up for a fight, so am I!"
She also said it's horrible that this has been going for 2 years and no one has tried to "treat" anything that has been going on. She says Phoebe deserves a better life than that.
She wants to try a treatment regimen!!!
She wants to start her on an immunosuppressant injection medication once a day and see how she does in a month!
If this medication helps we should see a major improvement in Phoebe's symptoms and overall health in a few weeks!!!
She is also going to work with our immunologist here (who she knows professionally through CHOP) so we won't have to travel so frequently to see her. She knows these trips take a lot out of Phoebe and she wants to minimize stress to her system!!!
It is far from over, but hopefully the meds will help and Phoebe can start to have the life she deserves!!!!