Mary Carlton celebrating Easter.
Mary Carlton Johnson's story.
Mary Carlton's story started Mother's Day 2009 in Mobile, Alabama. She was a late walker – she didn’t take her first steps till she was nearly 1 -- but there was no need for her to walk. She’s my baby and definitely my last child, so I LOVED carrying her. She was light as a feather! That Mother's Day she was toddling along, but didn't have good balance and was fussy. I assumed it was yet another ear infection, so we popped into the pediatrician late that Sunday afternoon. All clear, probably just gas.
My mother-in-law thought Mary Carlton looked a bit pigeon-toed over that weekend and recommended we have her looked at by someone other than the pediatrician, so we made an appointment with a pediatric orthopedist. It was a few weeks before we could get an appointment, but upon that visit we again got an “all clear.” Toddlers toddle, he said.
Fast-forward about six weeks from that visit. I grabbed Mary Carlton from the high chair so that she and I could go change her diaper. She collapsed onto the floor and was crying. I completely panicked. Ever the logical one, my husband tried to reassure me. Maybe her legs are asleep from being in the high chair at dinner, let's not panic!
The next morning, my husband went straight to the crib to get Mary Carlton and see if she could put any weight on her legs. Nope. She crumbled to the ground. So we get the first available appointment with one of the doctors at our pediatric group who was not our regular doctor and was not the doctor we saw in May either. He noticed some swelling on her knee, and again referred us to an orthopedist, but also ordered a battery of blood tests that day. His opinion was that a cold had most likely settled in her hip.
A dear friend, Dr. Shelly Naman, reviewed the blood work and noticed that Mary Carlton's Rheumatoid Factor was 15, a bit over the normal range of 7 to 14. She recommended a rheumatologist but because she was not our doctor she couldn't refer us. Our doctor group went with the "cold in the hip" theory.
In August, I had a house full of people visiting. Mary Carlton attempted to get up for the children's table and fell, crying. I took her to the changing table and tried to get her to stand but she refused, wailing. I left the house full of people and went straight to the pediatrician without an appointment. I was hysterical and Mary Carlton has cried herself to sleep as we wait to be seen. It was our regular doctor on call, and she agreed with Dr. Naman that Mary Carlton needed a rheumatologist. So we saw a local doctor twice, but he was focused just on managing the pain and took a wait-and-see approach. He also refused to give a "name" to the pain and discomfort Mary Carlton was feeling.
On October 5, 2009 we learned that Dr. Cron could see Mary Carlton at 8 a.m. the next day. By October 6, she was officially diagnosed with Juvenile Idiopathic Arthritis. A week later, she received an injection into her knee and the following January she had her first sedated MRI of her jaw. All clear! Mary Carlton also began making quarterly visits to her ophthalmologist to check for retina detachment. All clear there as well.
We continued to make routine visits to Birmingham, but Mary Carlton experienced no additional problems until April of 2011 when Dr. Cron found arthritis in her left hand. so she got another shot to treat that. In August, she had a rough couple of days, crying and not able to sit or stand well, so we went back to Dr. Cron and were dealt our biggest blow: weekly injections of Enbrel and Methotrexate. We began an 18-month treatment plan with the goal of controlling Mary Carlton's inflammation and pain so that we could reach a dormant state by the time she turned 5 in April, 2013.
It is now June, 2014, Mary Carlton is still taking her weekly injections. Unfortunately we are not to a dormant phase yet. But she is active and loving life. We see Dr. Cron every four months or so for routine visits. This treatment is working and we are thankful that the pain is under control. Of course we pray for a cure, but for now we are glad that Mary Carlton is an active 6-year-old.