Mackenzie’s Story

I’d like to tell you a story…..a story about a bright, energetic, playful little girl.  This little girl in the story is our daughter Mackenzie.

It was July of 2012 and Mackenzie started complaining that her hand hurt.  When we examined her hand we discovered a small lump on the back of her left hand.  Because we were not aware of any injury to her hand we inquired at daycare if anything unusual had occurred.  The ladies at the daycare indicated that earlier in the week the kids had been playing a game and had fallen to the floor in a large group and Mackenzie had come up from the bottom of the pile holding her hand and crying but that they assumed she had been stepped on.  She recovered quickly and went back to playing so they figured she was ok.  As the days went on Mackenzie continued to complain of pain in her hand and the lump became more prominent.  She would complain when we washed her hands after eating and she was starting to favor her right hand to avoid the use of the left.  The first part of August 2012, Mackenzie was still extremely sensitive about her hand and the bump was still present so the decision was made to take her to the doctor and have it examined. The first visit to the doctor did not provide any concrete answers. An X-ray was done and there were no breaks or abnormalities found so they prescribed Ibuprofen two times a day for two weeks along with an antibiotic just in case.

At the end of August, Mackenzie was again taken in to the doctor because after two weeks on the prescribed treatment, both the lump and the pain remained, and now there were signs of loss of some function of the fingers and hand, mainly in the morning. Because the doctor was still unsure what could be causing the symptoms, an MRI of her hand was ordered.

By the time a successful MRI was performed in September, Mackenzie was in a great deal of pain and discomfort, she no longer slept through the night, and was now complaining of pain in her elbows, knees, and feet and the lack of function in her left hand was increasing both in the morning and following naps. According to her doctor, the MRI showed bursitis and told us that it should go away in time. That answer made no sense to us, as the pain was now no longer centralized in her hand and she had loss of function. This was two months after the onset of the lump. Because we made a push against the initial diagnosis, blood work was ordered and a referral was made to a rheumatologist.

Mackenzie’s first visit to a rheumatologist was in Muskegon in the middle of October. Following the doctor’s initial evaluation of Mackenzie, he was fairly certain that we were facing arthritis. He prescribed naproxen for her pain and then referred Mackenzie to the University of Michigan for further evaluation and treatment because he was not a pediatric specialist. While we awaited an appointment with the pediatric rheumatology specialists at U of M, Mackenzie began what would become her bi-annual visits the optometrist for eye exams, looking for complications that can arise from arthritis.  Finally in November, Mackenzie met with the rheumatologists at U of M and we were given Mackenzie’s official diagnosis. Since then, Mackenzie has had quarterly visits to U of M for continued care and worked her way through numerous medications and medication combinations to find just the right mix. Following the initial visit to U of M, Mackenzie began a regular treatment with methotrexate which her we inject into her once a week. Mackenzie also began to take prednisolone. Both medications helped in the beginning and quickly cleared up the lump on the back of her hand. She also regained some of the movement she had lost. The prednisolone was a short-term medication, as she could not handle a steroid over a long period of time without potentially harmful side effects, so Mackenzie stopped that and continued on with the methotrexate.

However, we did notice that she still struggled to do things like climb stairs or get into a chair or on a couch on her own. She was still disengaged from other children and would not play in mid to large-sized groups. She was still complaining of pain and discomfort in her elbows, arms, legs, knees, and ankles. She was extremely sensitive to everything; if she dropped even a small toy on her foot, she would cry for half an hour about the pain. She grew extremely frustrated and angry and would have outbursts for little to no reason.

Soon after Mackenzie’s spring 2013 trip to U of M, the decision was made to move on to a biologic. Mackenzie began Enbrel in August of 2013. She currently receives an injection once a week, along with her weekly injection of methotrexate.  Along with starting the Enbrel, Mackenzie was also referred to physical therapy in hopes of helping her gain strength and development of the simple things she was unable to do when the pain was at its worst. The hope was also to help her gain some confidence in group settings.  Since Mackenzie began Enbrel she has shown remarkable improvement.  At her most recent visit to U of M in February of 2014, she showed no signs of active arthritis.

In the fall of 2013, Mackenzie started preschool and gymnastics and is learning to play in groups again. She is now able to climb stairs unassisted, climb in out of a chair, walk for fairly long distances, and has begun to dress herself. We know she still has a fight ahead of her, and Mackenzie does occasionally experience a flare of her symptoms, but she has shown more strength and courage then we could have ever imagined.

Mackenzie at her first attempt at an MRI

Mackenzie at her first attempt at an MRI

Recovering from first MRI attempt

Recovering from first MRI attempt

Recovering from successful MRI - note the lump on the back of her hand

Recovering from successful MRI – note the lump on the back of her hand

Mackenzie enjoying Animal Kingdom at Walt Disney World just after starting medication for pain.

Mackenzie enjoying Animal Kingdom at Walt Disney World just after starting medication for pain.