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All That JAS

All That JAS

Fall is a season that brings changes in our lives. As cooler weather arrives, daylight lessens per day and people ready themselves for the holidays. Holidays can be amazing, but the stress of the celebrations can be profound. Some social activities are demanding, some are perceived more taxing than they really are.

Several weeks ago, a mother and father brought their nine year-old son to me for evaluation. He is a delightful young lad. The first thing anyone notices about him is his unusual gait. He walks funny. His stride is off. When I asked him why, he quickly responded that walking hurt his back and legs. He developed a stride that was pain free. His medical history was complicated and tortuous. He was absolutely fine until five years-old, then he started having back pain without a traumatic event. Over the past four years, he developed a number of medical problems including gastrointestinal discomfort and abdominal pain, joint pain and swelling, especially in his hands and pain while walking. He is a very active child and wants to be like any other kid, but pain and fatigue gets in his way.

His mother and father have taken him to numerous physicians around the city. They have tried a number of specialists, all of whom have been rude, disrespectful and unhelpful. The only physician that has made a diagnosis is the pediatric ophthalmologist, who diagnosed him with corneal ulcerations and abrasions from time to time. The eye doctor thought the corneal disturbances occured because the child did not close his eyes completely while he slept. Sounds logical to those who listen for a living.

After examining the young man, and carefully taking a detailed medical history, I believed I knew what afflicted him. His laboratory results were in accord with my diagnosis: Juvenile Ankylosing Spondylitis. Initially his parents looked at me as if I spoke Armenian to them when I gave them my thoughts. It's a mouthful of words that have no meaning unless you have an understanding of the disease associated with them.

Simply stated, Juvenile Ankylosing Spondylitis (JAS) is a type of arthritis in which there is long term inflammation of the joints of the spine. Typically the joints where the spine joins the pelvis are also affected. Occasionally other joints such as the shoulders or hips are involved. Eye and bowel problems may also occur. If anyone was a candidate for this diagnosis, this nine year-old was.

When he and his parents went home, they were uncertain about my ideas, diagnosis and proposed treatment. The change in diet was something the parents were concerned about, but they both attested to his general bowel problems. They would try to adhere to the plan as close as possible. I am certain they were polite and respectful, but at the same time wondering how I could come up with a diagnosis when so many other physicians including specialists in all fields were unable to put it all together.

Two weeks passed before I saw the parents again. When both parents came to visit with me, Mom had done her homework. She researched the diagnosis thoroughly on the internet. She brought me a few articles from excellent medical journals. She also had three pages of questions about the illness, treatment options and prognostic probabilities. She desperately wanted her child to return to normal, or at least wanted me to tell her that her nine year-old son would be able to be normal on medication.

Tears were shed in our conversations about their child. They wanted more testing done to secure the diagnosis, some I agreed with, some not. There is always a strategy in medical testing that requires a little forethought. When I explained my thoughts about more testing and the impacts on their son, they saw the light. Mom was very much concerned about the emotional health and self-esteem issues her son would face, dad was concerned about the nuts and bolts of treatment and being as strict as possible at home to assure the best outcome. I spoke to her about kids in his class who might bully him because he was a bit fragile due to his illness. She said that he had trouble already. I told her he needed coping mechanisms to defuse any disturbing thoughts he had about himself as he tries to keep up with the other kids. His illness will not allow him to run faster or jump higher than his classmates. He is better suited for yoga, internal martial arts and low impact exercise like swimming.

They left the office after their second visit with a sense of direction, understanding and knowledge. Mom had her marching orders. Dad has his notes from our conversation.

If there is one thing I have learned in medicine it is that the patient's medical biography, their personal story about their illness will reveal the diagnosis or diagnoses. Too often, physicians are in a hurry. I read a study published two years ago that revealed that physicians diagnose patients within thirty seconds to two minutes of their initial visit with the doctor. That is absurd, but apparently true. Who can intuit a disease that fast?

I have also found that in the majority of the cases I refer out for consultation, medical specialists do better seeing patients who have a diagnosis attached to them before they walk into their offices. Many times the specialist will deny the diagnosis until they have evaluated the patient and reviewed their clinical laboratory data. Sometimes they deny the diagnosis until a biopsy or definitive test reveals the diagnosis. They make every maneuver to avoid eating crow, sometimes even denying the biopsy reports. At that point I find a different medical specialist to give an opinion, but I never let the specialist assume their care for they have no ability to manage patients with multiple illnesses or conditions.

So what is the connection about the fall season and this case? Transformation. This young man will need to transform himself and transcend his illness if he is to thrive with it. There is no better season than the fall to embrace illness since all of nature is shedding the old and preparing for the new: trees become barren, grass turns brown, weeds die out, animals hibernate, and people actually try to show thoughtfulness. Unfortunately the medical system does not change, nor do those professionals in it find anything revealing about nature's transformations.

I believe this family will transform and transcend which will impact this young man for the rest of his life. And I'll say he's better because of All That JAS.  

Doc

Posted by Amanda Sanders at 11:41 AM
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