By Anne-Marie Vidal
With gratitude to Annie and Shannon Duncan who shared their story because “they want people to know and to understand.”
Her favorite color is red and her best friend’s name is Blade. When she grows up she wants to study and care for dolphins because they are her favorite animal. She likes to swim and she likes to read. If she had one wish it would be to live on a farm with “every type of farm animal.” To the casual observer, her bright brown eyes and beautiful smile look like anything but a child grappling with serious health problems. At the age of 8, Annie Michelle Duncan is learning to cope with Juvenile Fibromyalgia Syndrome, a pediatric illness that is even more poorly understood and researched than its adult counterpart. For Annie and her parents, it has meant many changes and having to adapt their living situation to suit their daughters, sometimes, limited physical energy.
“She is number one in our lives, she comes first and I remind her of it when things are difficult for her,” says Shannon Duncan, Annie’s mother. “Annie is learning to deal with her FMS but it is not easy. She gets emotional at times and will go through periods of saying ‘Why me?’” That question is one that between 8-12 million FMS sufferers ask themselves frequently, but while most of us draw on life experiences to manage our symptoms and needs, a second grader does not have that resource. The lack of research into juvenile fibromyalgia is emphasized by the fact that there is no estimate of how many cases of FMS are children. Yet, Juvenile Fibromyalgia does exist as the pediatric Rheumatologist treating Annie assured Shannon Duncan.
Like many of us Annie has to take several medications to help her function. Right now she has prescriptions for ten different medications to help her asthma and to help her manage her pain. Her young age has not spared Annie migraine headaches or Irritable Bowel syndrome, two of the ailments that frequently accompany FMS. (Forty percent of FMS patients have reported having asthma, while migraines and IBS affect 60 percent.) At times her headaches are so bad she asks her mother for her “medicine.” At other times she will try to avoid them and rest or distract herself from the pain. Yet, there are things other children take for granted that are simply too much for Annie; school field trips and walks through the malls require more walking than many FMS survivors can cope. For Annie, this is doubly a problem and one which will cause the Duncan family to invest in a wheelchair before the school year proceeds to field trips.
While Shannon’s pregnancy with Annie was normal in the first two trimesters, it was high risk because she has one kidney. After her sixth month of pregnancy, Shannon was confined to home with very limited activity to prevent an early delivery. More than once, she went into premature labor, which had to be halted with the use of medication.
When Annie was a month old, Shannon and her husband, Roger, rushed her to the emergency room because she was having trouble breathing. She was diagnosed with asthma and allergies and treated with albuterol. This was the first of many trips that Shannon and Roger would make to emergency rooms throughout their daughter’s infancy, toddler and preschool years. Annie’s early years were punctuated with health problems and medical tests but her cognitive and physical development continued normally. “As an infant she needed special formula because she could not tolerate animal milk; instead she had to drink a type of goat’s milk. Originally thought to be lactose intolerant, the problem was later identified as an inability to break down the proteins in milk.” Shannon said.
“Annie had her first colonoscopy to determine the reason for repeated bouts of constipation at 18 months old; a month before she had a lower GI series “At eight, she has had her more medical tests than I have had in my life time.” From her birth until the age of five Annie ran unusually high fevers often between 103 – 107 degrees. “She would become too weak to drink and would have to be re-hydrated through intravenous fluids,” Shannon explained. Like most children with a serious illness Annie has had a lot of medical examinations including a complete set of allergy tests at age two; these were repeated when she was four and seven. She has had extensive blood work and her tests revealed a positive antinuclear antibody (ANA), often indicative of connective tissue disease. “Her rheumatologist was concerned that she had juvenile rheumatoid arthritis, which was found not to be the case.” Shortly thereafter she was diagnosed with Fibromyalgia syndrome. She was 7 ½.
Annie’s rheumatologist confirmed her FMS based on her 16 tender points. Annie feels pain at every one. At times the round of doctor’s appointments she must keep prompts her to ask, “Are we going to the doctor that will hurt?” (her rheumatologist). Shannon contends with her own pain at having to answer this beautiful girl with a “Yes.”
Yet, her mother emphasized that throughout all, Annie’s spirits have been high and her grades are good to excellent. There are limits to what Annie can do, however. When it is over 80 degrees she cannot join her friends on the playground at lunchtime and recess. Games and sports involving running or continual physical exertion are some of the many things that Annie has to avoid. “She knows her triggers and is good at avoiding them,” her mother notes.
Sadly, Annie’s responsible attitude toward her health has been misinterpreted. Teachers at a school that she formerly attended were anything but warm and caring toward her. After trying to have the child outside during hot weather, the school reluctantly let her stay in her classroom to read. However, their indifferent attitude toward Annie’s health became apparent in Shannon’s many conferences with teacher and principal. “Despite doctors’ notes, prescriptions, and letters from physicians, they just didn’t understand. I think they thought that I was crazy and that Annie was lazy.” There were a couple of incidents wherein a teacher berated Annie until she cried during class; there was another in which the teacher grabbed her arm and left bruises.” Her parents decided that pursuing action against the school would force Annie to recall and relive the unpleasantness of the last year.
When interviewed, Annie happily shared activities of her first three weeks in school. She is enjoying her new school and making many friends. Her mother notes that teachers at this school have made an extra effort to meet Annie and her. While other children are at recess, Annie goes to the library to read or now reports to the Teacher’s Resource office school where she assists the administrative support staff; she takes pride in being a junior secretary. One of her favorite after school activities is to participate in Indian Guides where Annie and others learn about different Native peoples.
In Guides, she pursues crafts and other activities that minimize physical exertion. Her Indian name is “Dancer” because of her love of dancing. Shannon participates in Indian Guides with her daughter and is the tribal chief. She has been given the name of “Medicine Woman” due to the large first aid kit she has developed over the years of dealing with home illnesses. Annie’s friends think it is “neat” that Shannon can “fix” so many things.
When her pain is severe, and her medications do not seem to help, Annie, like many of us, will cry. Then she and Shannon cuddle and read books together. It may be that this is better than what the current medical science has to offer. A search through the Medline database of the National Institute of Health and three other medical search engines turned up less than 5 articles on juvenile fibromyalgia. Juvenile CFIDS fared a little better, but still the literature for both disorders totaled about a dozen articles. Those articles emphasized, cognitive based training, exercise and occupational therapy, the same not inadequate treatment methods that are familiar to the adult population contending with these disorders.
Shannon and Annie have resolved to go to Washington, DC next year and meet with elected officials to explain the plight of Fibromyalgia and CFIDS sufferers. “I think the world needs to be made aware of these two illnesses, because so many people don't understand. My 8-year-old daughter was diagnosed with FMS in October 2001 after years of being run through the ringer.” Shannon wrote. “The worst part is when your family says, "Oh she'll out grow it." Unlike recent CFIDS studies that claim many children will outgrow CFIDS, that possibility has not been offered to the Duncan family. Shannon thinks “there should be a nation-wide group of people whom go to schools, churches, anywhere and everywhere to speak out and bring understanding to their communities. Let’s think big, the world. My great grandmother always said, ‘Those who know teach and those who don't learn.’ "
Knowing Annie, even for a short time, has doubled my commitment to advocacy and helped me go forward for another day. If she is willing to keep fighting, how can I not?
Copyright Anne-Marie Vidal and Our FM-CFS World, Inc.