Hi @samiasibley, you must be at your wits end trying to find comfort for your daughter with all of this pain! With her latest MRI not showing any new tumors that is at least a shred of good news for her. But the edema sounds excruciating. I had bone pain with a medication I was on and wow, that was a level 15 on the pain scale from 1-10. I don’t wish that on anyone!

I found some interesting information on Bone Marrow Edema Syndrome from the National Institute of Health. From a quick scan of the article, there is thought to be some connection with BMES and a vitamin D deficiency, though the causes are sometimes difficult to identify. According to the article, there have been some treatments with Vit D and bone building medications. I wonder if your daughter’s diagnosis of Pten Hamartoma Tumor Syndrome might be complicating this as well. The article is worth reading.
https://www.ncbi.nlm.nih.gov/books/NBK559176/
Since you’re in the Phoenix area, have you considered requesting an appointment at the Mayo Clinic there? I’m providing you with the link to the Mayo home page. Just pop on to the site and you’ll see the phone number for the Phoenix campus. You can call and speak with a coordinator who will take your information and you should hear back from them within 3 business days. Your daughter doesn’t need a referral though sometimes it can help if a doctor makes the recommendation. But getting your daughter into a larger institution with a very deep bench of medical staff could greatly benefit her.
http://mayocl.in/1mtmR63
How old is your daughter?