We had another doctor visit today to get Madilyn's test results from Monday.
Not sure where to start explaining all of this, so let's start with the easy stuff first.
All of her bloodwork came back normal. Nothing out of the ordinary there.
Then on to the X-rays.
First he read the results from the chest X-ray - Normal
Next, the skull - Normal.
Last, the right knee - another mass on the femur bone at the knee. Not normal.
So, the pain she had been having in her knee was related to all this.
Most likely she has something called Eosinophilic Granuloma, or EG. You can read more about what that all is here. This is the same benign mass that Dr. Fabregas had thought it could be when they did the biopsy. According to Dr. Shore, the biopsy results alone cannot rule out EG, and her final culture results came back this week as well from pathology on the biopsy, and they were negative for bacterial growth, which tells us that the mass in NOT made up of an infection after all.
As soon as Dr. Shore read the X-ray results from the knee, he became like a kid on Christmas morning. In his line of work, he must get him a thrill to solve a mystery, or at least start putting pieces of the puzzle together to get to a diagnosis. He immediately went and called Dr. Fabregas to tell him about the lesion in the femur. And to say the least, it sounds like he was shocked there was another lesion.
Dr. Shore could not tell us any specifics about what the treatment will be. He said EG is an orthopedic and hemalogist specialty. He said most likely Dr. Fab will order a full skeletal X-ray to rule out any additional lesions, and depending on what they find, they will determine the treatment.
He said there is a possibility it could also be chronic recurrent multifocal osteomyelitis and the treatment for either disease, as long as she doesn't have any additional lesions, would be very similar.
He wants her to continue taking the antibiotics until she sees Dr. Fab again.
So, again, more waiting for answers. Right now we are scheduled to see Dr. Fab next Thursday, 7/2, but with this new finding, I am going to call in the morning to see if they want to see her sooner.
How much crazier this is going to get, I am not sure. But luckily our trip to ATL and back today was much easier than Monday. Good thing, cause I wasn't in the mood for fried chicken again.
I'll keep you posted on any news. Thanks for keeping up with all this.
Love you all!
7 years ago