Two years ago, our beautiful daughter Emma was a 9 year-old 4th grader when she was diagnosed with Autoimmune Hepatitis. For a year or so before she was diagnosed, she was participating in gymnastics and cheer. She would come home from practices complaining about pain in different parts of her body. Emma’s pediatrician chalked it up to growing pains.
Six months before she was diagnosed, Emma had a high fever and her knee swelled to the point she couldn’t move it. The ER doctors said the inflammation was caused by a virus. They gave her Motrin and sent us home. In hindsight, her liver was so stressed that it was starting to manifest in a handful of different symptoms. Pain would come and go through her knees, ankles, wrists, and fingers. She wasn’t doing very well in school because she couldn’t focus. She was a petite girl and was getting skinnier by the month. She laughed at the prospect of signing up for soccer because it was “too much running”.
Despite all the symptoms, we didn’t realize there was something wrong with her. Her body was in turmoil and had degraded to the point she was “failing to thrive”. On December 29, 2014 Emma woke up in tears because her hand was swollen, stiff, and hurt so bad she couldn’t move her fingers. The pediatrician ordered blood work. The results indicated an elevated SED rate. That test result is what made us really start looking deeper into what was going on with Emma’s body.
Our first specialist was a Rheumatologist. After a thorough examination, he unequivocally diagnosed her with Juvenile Idiopathic Arthritis. The diagnosis made sense. She had pain that would float through her body and the joints that hurt were swollen with limited mobility. He indicated that JIA was an autoimmune disease and they usually come in pairs or triads. He ordered a full set of tests and bloodwork to cover the gastrointestinal tract. That’s when things got serious and scary. Her ALT/AST rates were more than 1,400, almost 100 times more than a healthy liver. They told us to immediately get her back to the lab to do more bloodwork to see if her liver was functioning….and told us to be prepared to check-in to the hospital that night if the results came back negative. There are lots of low points in this story–that phone call was one of the darkest.
Shortly thereafter, Emma spent a week in Rady Children’s Hospital for a biopsy, MRI, and for her first strong dose of intravenous steroids. The procedures led to the formal diagnosis of Autoimmune Hepatitis. The steroids were like a little piece of magic. The pain in her joints went away in less than 48 hours. It was like night and day. She was up and moving around the hospital. She was able to focus on intricate coloring projects for a couple of hours. The joint pain and all JIA symptoms went away almost immediately. Our little girl was coming back to us, but we still have to deal with the internal issues caused by the AIH.
The biopsy indicated the fibrosis on Emma’s liver was 5 on a scale of 1 to 6. Her body had been fighting her liver for quite a while and the damage was severe. The worst case scenarios are words we had never really considered: cirrhosis, cancer, and transplant. We needed to establish a treatment plan and get to it immediately.
It takes a lot of work to treat and manage AIH. My wife, Marie, is an absolute HERO when it comes to taking care of our daughter. We need to keep the immunosuppressant in her body at a constant level. So, they do the first round of pills at 5:30 AM and then Emma goes back to sleep. The 2nd round is in the early afternoon to make sure we give the medicine the best chance of having the most effective impact. In addition to the pharmaceuticals, we do a regimen of supplements to promote a healthy body. We also actively work keep Emma on a clean diet to promote a healthy body. All of this takes a considerable amount of time and energy, not to mention discipline, to make it happen. Marie is great at running the show. Emma is an absolute champion for learning to be so disciplined at such a young age.
Here and Now
Emma is doing great. Her ALT/AST counts are in the 40-60 range. We want to get them down to less than 20 and we actively work to make that happen. Despite the slightly elevated ALT/AST counts, Emma looks and feels great. She is doing great in school. She is participating in extra-curricular activities. She has been playing soccer for the last year. She started running cross-country this past fall and she is about to start her first season of lacrosse.
What does the future hold?
We don’t know. Although Emma looks good and feels good, her liver levels are still elevated and they have been for the last 2 years. If we can’t get this under control, bad things could happen to a young, beautiful, and innocent little girl.
Why we participate
We help raise money for the ALF with the hope that research will lead to cures. We’d also like to bring awareness to Autoimmune Hepatitis. It takes time, money, and effort. We are doing our part to help with the money part of the equation. Please join us and contribute to the cause.
Marc and Marie Alexander
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