What Happened to Livvy?

Olivia was admitted to the Connecticut Childrens Medical Center in Hartford on July 1st. Because it's difficult to update family, friends and colleagues on "what's going on" with Livvy, I decided to keep a journal to share with you. I also hope this journal can help other parents if God forbid they find themselves desperate for answers or a diagnosis for their child.

Backstory
So how did this start?

Back in December 09, Olivia first complained of back pain. The pediatrician and I figured it was related to a slip on ice or something like that and she was given Motrin. The pain persisted for weeks and the doctor didn't think this was unusual, eventually the pain subsided, but was always worse at night. This particular pain was very low in her back, as if she fell on her tailbone.

This Summer
In early June, Olivia began complaining about back pain and a pain that stretched around her upper abdomen and ribs. I thought maybe it was gas or something, but on a Monday morning, she was in SO much pain I took her to the ER. Xrays didn't show anything abnormal so they sent us on our way, recommending Motrin and change in diet. A follow up with the pediatrician resulted in a 'mild milk allergy' that could have caused cramps, constipation and the muscle spasms in the back. Because she was in so much pain, and couldn't lay down, she missed the last week of school. I tried taking her for a second set of Xrays, but they sent us home because she refused to lay down because of the pain.

As June came to an end, Olivia's condition worsened, the pain, though it came and went, could be excruciating at times, waking her up screaming from a sound sleep. She wouldn't sleep in her bed because she said she could pull herself up easier on the couch. At one point the pediatrician recommended she see a physical therapist or chiropractor. She refused to let the chiropractor touch her-thank god. She also refused to lay down for x-rays. The pediatrician suspected her muscle spasms were exaggerated by anxiety and prescribed ativan, followed by zoloft.

CT Scan
My baby girl INSISTed she wasn't 'crazy' and was in real, unimagined pain. The dr finally set up the CT scan on Thursday, July 1st.

Spinal Lesions
The ct scan showed several lesions and the loss of an entire vertebrae, as if it totally collapsed or crumbled. The original hunch was "langerhans cell histiocytosis" eosinophilic granuloma. There are three kinds of 'histiocytosis' it could be, the first (name above) affects just bones, second, this same thing could affect other tissue in the body and the worst of this class of histiocytosis is lymphoma. Soon after, the CT Scan was followed by a needle biopsy, delayed by the 4th of July weekend, which came back "inconclusive." Next was a full Skeletal Survey (Xrays of all her bones), an MRI and and abdominal CT Scan.

An "open biopsy" was then done to take samples of the affected vertebrea lesions, and send them off for testing. The open biopsy surgery was done on July 7th. So far, the only news is that this may be a "Non Langerhans cell histiocytosis", again, waiting on pathology.

A few days later, still healing from a 5 inch incision along her spine, she was fitted with a brace to prevent further spinal collapse. In the meantime, today is Monday, July 12th, and I'm still waiting on Pathology results.

For most of this ordeal in CCMC (hospital) she was on a morphine drip, IV fluids, steroids, etc. Since they don't have a diagnosis, and her mood went from bad, to dangerously off the charts -they took her off both for the time being and the pain seems to be under control with Tylenol w/codeine and Ativan.