A Window For Pain
Thirteen-year-old Bridey looked like a small, angry, caged, and frightened wild animal as she grimaced into the face of her patient mother and voiced a loud howling noise. They sat together in my office, hoping I could help her behavioral problems. Both mother and daughter were used to her episodes of screaming at home - sometimes for hours at a time and of such volume that neighbors several houses away were alarmed. Often asked why she behaved in this seemingly feral way, she always moaned that she was in pain. There were few specifics in her description of pain - both she and her mother defined it as a kind of "psychological pain" because it took no form that she could describe and they had no reason to doubt her very real emotional anguish.
Bridey recently had been discharged from a children's psychiatric hospital. She had been treated with antipsychotics and mood-stabilizing medications and was described as somewhat improved. Her conceptualization of pain continued, unexamined. After several months she stopped the medications and returned to her usual isolation, utterly miserable, angry, and fearful of leaving the house.
Home-schooled for the last three years because of her "strange behavior" with seemingly paranoid features, she thought people didn't like to be around her, never believed her and looked at her strangely - (probably all actually true then) and an undefined learning disability, Bridey had lost her previously keen scholastic skills, lost all social confidence, could no longer concentrate to read or to focus on her studies. Eventually, even the teacher for homebound children gave up trying to educate her.
Most of the time Bridey was alone while her Mom's job kept the family together and her siblings went to school. Her father had re-married and lived far away in Florida. Like everyone else but her Mom, he seemed to be leery of relating to his daughter - a situation that grieved the patient.
When asked about a history of tick encounters because of her cognitive losses, (tick-borne disease was a prime suspect.), Bridey vividly recalled being bitten in the ear when she was in the 3rd grade. It caused little concern at the time. But it was not long after, at the age of 8, that Bridey began lamenting to teachers, parents, and anyone who would listen: "I know something is wrong with my mind - I can't think the same as I used to anymore. I can't remember things anymore. I can't read like before."
Well meaning teachers tried reassuring the little girl that she was imagining her mental fogginess and that she was fine. She felt patronized, knowing that they were wrong. She added, "Then soon after that, I had such pain in my knees that I couldn't walk. They said I was just attention getting, but for a while I had to go to school in a wheelchair. I knew people weren't listening to me and had started to look at me strangely, so I began to avoid people. Finally, by the time I was 10, it all was unbearable. I couldn't think clearly and had no confidence anymore, so I quit going to school."
Three years after she left school, I was asked to help with her emotional problems. I also tested her blood and urine to determine if her cognitive losses could have an infectious origin. Ten years after the known tick-bite, labwork revealed the active presence in her body of Borrelia burgdorferi, the bacterial cause of Lyme disease.
I hypothesize that over the years, that Bridey's pain intensified and generalized to her whole body, becoming more focused when antibiotics were begun. When a deep pain in her back became unbearable, her mother would take her to the local ER. The physicians there were certain that anyone who writhed, screamed, and gyrated as Bridey did couldn't be experiencing real pain - they insisted that "real" back pain caused people to be stiff not limber as she was. Luckily, at this point she was under the care of Connecticut pediatrician Dr. Charles Ray Jones, who disagreed.
"Children are different from adults," he said. "She has deep bone pain from Lyme disease and, like most kids isn't guarding against it by stiffening up like grown-ups do."
I had never before treated a child with heavy-duty pain medications, especially a child who was now on antibiotics and psychotropic medications. Relief was clearly called for because Bridey at this point was non-functional due to her pain, and the ER had made it clear that she would not be welcome there again. Conventional painkillers gave her no relief. To everyone's surprise, as opioid pain medication succeeded, Bridey began to be more interested in self care, the screaming episodes phased out, and she had mental energy to devote to her home-schooling. I gradually increased her dosage to adult levels, yet she experienced almost no side effects.
At her most anguished, Bridey had threatened serious violence to her siblings and herself, but now she keeps "forgetting why I was so angry," is solicitous of them and enjoys their company, at least part of the time. While on pain medication she successfully attended a private school part-time and now plans a future that includes full-time public school. She no longer has pain or takes any pain medications, and she still takes needed antibiotics for treatment of her chronic neuro-Lyme disease. At last, my psychotropic medications (Seroquel and Wellbytrin) finally do work. Psycho-tropic meds offered earlier had not worked optimally before antibiotics and pain meds were begun.
There is, in treatment of chronic neurologic Lyme symptoms, a window in which pain has to be addressed or the social, maturational, educational, and biotoxin damage to the psyche may go beyond repair. One should not expect to be able to work well with a child who is distracted by unfathomable pain. I suspect that in addition to her bone pain, Bridey experienced a kind of generalized "Central Pain Syndrome" as it is called. It is very hard for adults to define this central pain in themselves. It is virtually impossible even for such bright youngsters as Bridey to put this pain into words. Thus, we had this description by mother and daughter - "a kind of emotional pain that is physical." Sometimes a howl was the only way to express it.
Today Bridey no longer looks hunted and cornered. She appears as and behaves like the young teenager that she is. Our main challenge lately is to deal with her concern over appetite. Pain is no longer in the picture.
Bridey serves as a valued example of why we health professionals need to listen carefully to children for clues to the presence and effects of invisible chronic pain; understanding that they do not have the life experience to describe it adequately in words. We must not fear offering pain medications that, judiciously given and carefully followed, can offer adequate relief when they are indicated and when lesser measures no longer suffice. Powerful pain medication launched Bridey in the direction of reopening her own personal window on the world.