Bone scans and MRIs

Dr. Sukesh ordered a bone scan to help support his amplified pain syndrome diagnosis. It can show the blood flow in the body or lack of it. Well it actually showed subtle inflammation in his hands and feet  without certainty.  I then asked for an MRI and he agreed. I have been asking for an MRI since the beginning. Every time I was told eventually. I wish I would have pushed harder on this issue. Even if it showed nothing it could be used for a baseline, right? My insurance is easy, it would pay for it with no authorization required! The MRI was completed and showed a diffused mottled pattern in his bone marrow throughout most of his foot. This is everywhere his foot hurts! Dr. Sukesh now wants him to see a hematologist/oncologist.  They want to be sure he has not been misdiagnosed. Really? 19 months and we are talking misdiagnosed? 

We go to All Children's Hospital and she advises that if it is anything it is leukemia however she does not think it is that because Trevor does not look like he has leukemia. She does present this whole theory that is a possibility but unlikely because of the timeframe. But she wants him to see an orthopedic physician and their rheumatologist and then she would probably do a bone marrow test. This would be the only way to know for sure.  Here is her possible theory that is very scary:

Some children present when first diagnosed with joint pain and stiffness.  They are diagnosed with juvenile arthritis and begin treatment with methotrexate. Well actually if the doctor does not look closely at the patient's blood tests they can actually have leukemia.  This is actually more common than it should be.  Some children will present with the joint pain just like the JiA kids but have low red blood cell counts.  Once they begin treatment with methotrexate (which is a chemo drug used to also treat leukemia) it actually can somewhat treat the cancer. It usually will not last that long.  Leukemia patients have a much higher dose and other symptoms begin to show after six months or so. 

After she presented this possibility of course I can't get it out of my mind. We will have to do the bone marrow test in order to give me peace of mind. Dr. Sukesh will not treat him with any medication until he has it done. All of the appointments are next week. 

And to top it off, Trevor just seems to not be doing well at all. He went on a field trip on Wednesday, November 20th- 22nd but we had to got pick him up the first night because he got overheated playing football and almost passed out.  He could not get over it. It happened at around 1:00pm and they called at 6:00pm saying he just couldn't get better. He was having fun too before that.

This Monday, December 2nd he went to school but kept falling asleep and had a lot of joint pain. Tuesday he stayed home and slept all day. No tv or games. He got up and ate lunch and dinner. Wednesday, I took him to the ER at All Children's Hospital. Still exhausted!!! He said he just hurt so bad. He said he was dizzy and was having a hard time concentrating. They did blood tests. His red blood counts were a little low but they were not concerned about it. Why not????? I'm beyond frustrated now but I am determined to find out why he has that pattern in his bone marrow!!!! I just want him to stop hurting. It breaks my heart to have him look at me and ask now what? I told him, I will get them to figure this out! Sometimes I think I could go through medical school myself before they do. I really thought going to the ER would speed up some of these tests but it did not. I just don't know what else to do. I hope we can make it to next week appointments!