Sweet Meggie has been having more pain in her ankle(s). It’s been a long journey and over 2 years now since all her troubles began.
We went back to her Orthopedic Surgeon thinking her infection was back, AGAIN. We were terrified of a 3rd surgery to have the bone scraped. (They call it a debridgment.) After an X-ray showed healthy bone regrowth, he ordered another MRI of her ankle to look for any pockets of infection. During our conversation he mentioned a few other things to consider and briefly mentioned something called CRMO. I tucked it in the back of my mind and told myself to go home and look into it... (Boy am I glad I remembered it so clearly and felt like I should look into it.) When I got home I started reading whatever I could find (not very much) and listening to the few YouTube lectures I could find about it. It fit her symptoms perfectly, but really the odds of her having it were like 1 in 1,000,000! It may be closer to 25 in a million, but incredibly rare.
After her MRI the nurse called and said it looked like osteomyelitis and they wanted to schedule another surgery. Shocked I told her I wanted to talk to the surgeon about CRMO before doing that again. The next day he called me and said after reviewing it further, it would be a good idea to look into CRMO before proceeding. (Okay then why were they trying to scheduling surgery??)
So he bumped us to the top of the list to see a Rheumatologist at Primary Children’s Hospital . She sent us in for a full body MRI and bloodwork (they took about 10 vials of blood and Meg was a CHAMP about it! I was so proud of her!)
Within a week we were back at Primary’s and were given an official diagnosis. It was Chronic Recurrent Multifocal Osteomyelitis (CRMO). Meg showed bone lesions on both of her tibia bones, which makes sense why both of her ankles have hurt over the last 2 years. It is definitely worse on the left side, but we always thought the right hurt from compensating for the limping on the left side. It all makes sense now! The frustrating part is that it wasn’t picked up on sooner and that it was CRMO the entire time. There was never a bacterial infection and the 2nd surgery wasn’t ever needed. (The first surgery was needed because they won’t diagnose CRMO without ruling out cancer and infection, but when nothing grew in the biopsy, that should have been a flag for CRMO. AND when I told her doctor about her stress fracture in her other foot months before and asked if they could be related, he assured me there was no connection. It’s frustrating because all the pieces were there and there were multiple flags. If they caught on sooner she wouldn’t have had the 2nd painful surgery and she wouldn’t have had to endure months of intense antibiotics that made her so sick and caused her to get C-Diff, which I don't think she has fully recovered from still.) It’s too bad it took so long, but we truly are grateful to have a proper diagnosis and some answers.
So now we experiment with different treatments. Some treatments are intense and scary, but before we go there, we are starting out with NSAIDs to see if that will calm down the inflammation. For now she’s on Celebrex 2 times a day and we’ll asses that soon. (It’s been a couple weeks now and so far it’s not helping, unfortunately.) She’ll get MRI’s every 6 months to see if it’s spreading and check if the current lesions are clearing up. She’ll be closely monitored throughout her life and will always have it. The goal is to manage it and find ways to get it in remission. She’s already had a few flare-ups so we know that will be part of life, but one thing I know about Meg, she’s one tough cookie! She can deal with whatever life throws at her!! We got this!!
Long Dr appointments are our favorite!
Matthew brought Meg a surprise before her MRI. So sweet! A childhood throwback to Daniel Tiger 🐯
It's kind of an inside thing between them.
Meg’s full body MRI. We’ve had a few ankle MRI’s, but never a full body. This was much more intense.
They strapped her down and then loaded all this on top of her. So scary to an 11 year old.
She was in there for almost 2 hours!! I couldn’t have been prouder of her. She was amazing. It broke our hearts to leave her in there alone, but we went over a scripture with her before she went in to keep in mind. Philippians 4:13 "I can do all things through Christ who strengthens me."
She wasn’t alone in that room.
So for now we are managing the pain the best we can… check out these cool wrap around heating pads I found!! So cool Meg! We will get this figured out, we want you running around and playing pain free!
