Extrait
1
Shepherd’s Story, Part 1
The Leap
What if we’d never met Char?
—Darin and me
When my son Shepherd was three years old, he and his twin brother Beau took soccer lessons for the first time. They were so excited the night before their first practice that they slept in their uniforms—a purple T-shirt with a yellow star kicking the ball with one of its points. But when we got to the field the next day, Shepherd’s enthusiasm evaporated. While Beau and the other kids zigzagged around the cones, Shepherd stood still and looked bewildered. When it was his turn to kick the ball, he seemed lost. After fifteen minutes, he walked off the field and sat down in my lap, saying he was too tired to play. We watched the other kids, and I pointed out to him the drills I thought he might enjoy, the ones that Beau was charging through. But Shepherd refused to go back to the field.
His reaction didn’t concern me much—he was three, after all, and I already thought of him, in the way that parents tend to categorize their children even as we tell ourselves we shouldn’t, as not that interested in sports.
My husband, Darin, and I had recently noticed that Shepherd occasionally walked with a limp, but it was faint enough that sometimes when you looked for it, it was gone. Faint enough—though it seems incredible now—that we didn’t connect it to his reluctance on the field.
I assumed that Shepherd would warm to his soccer lessons the next time around. He and Beau still donned their jerseys at bedtime and talked each night about “soccer school” at the dinner table. But the following Saturday, Shepherd broke into tears the moment he started to run.
That week we saw our pediatrician, who referred us to an orthopedist. When no injury showed up on the X-ray, the doctor said that arthritis was most likely the issue. Arthritis in a three-year-old? It sounded more odd than alarming at first, but over the next few weeks, as we waited to see the next specialist, we watched Shepherd spend more and more time on the couch. His stiff-legged walk became more pronounced, though he claimed that it was just an imitation. “I’m a penguin,” he would say. Then he started having trouble getting out of bed.
A month after our first appointment, we went to see Dr. Philip Kahn, a pediatric rheumatologist at NYU Langone Medical Center, who gave Shepherd a diagnosis of juvenile idiopathic arthritis.
JIA is an autoimmune disease. It causes painful swelling in the joints. It can lead to stunted growth, disability, and, rarely, blindness.
When Dr. Kahn tested his joints, Shepherd denied that it hurt even as he teared up in pain. Our son was stoic, Dr. Kahn said, as the kids he treated often were. Shepherd turned out to have arthritis in both knees and both wrists, as well as in his left shoulder and elbow. Many months later a particular memory came back to me, its attendant mother’s guilt harsh despite the passage of time: We’d bribed him to go to that last practice with the promise of ice cream.
Before driving home from the appointment, all four of us stopped for lunch at a hummus place that Dr. Kahn had recommended. We sat outside on the sidewalk, and Darin and I pretended that we were celebrating. This is great news, we told Shepherd. Now that we know what’s wrong, you can take medicine that will make you feel better. Darin remembered thinking that we were lying to him, but he was trying to be more optimistic than he felt, for Shepherd’s sake and for mine. Shepherd barely ate his lunch.
When we got home, I called my sister, Rae. She already knew that overwhelmed feeling of getting a child’s diagnosis; she’d been through it with her daughter, who had severe asthma and fourteen food allergies. Rae talked about how that moment when you receive a diagnosis like this, for your child, eclipses everything. She tried to reassure me that if an illness isn’t life-threatening, the fear eventually dies down, and coping with it becomes routine. Her daughter was three, the same age as Shepherd.
Rae must have made a similar call to me when she first got the allergy news about her daughter a couple of years before, but I have no memory of it. I’m sure I was sympathetic. I knew that having a child with allergies was difficult and scary, of course. But it was only after we found out about Shepherd’s JIA, maybe not that first day, but sometime in the weeks afterward, that I realized I’d really had no idea before about what she was dealing with as a mother. I called her and told her I was sorry. Partly because I hadn’t fully understood it, even though I don’t think I could have. I don’t think anyone can. But I also wanted to tell her I was sorry for what she went through because I knew now how much there was to be sorry for.
That day of Shepherd’s diagnosis, Rae mentioned that a friend of her sister-in-law, a woman named Char Walker (short for Charlotte), sent her son’s arthritis into remission with alternative medicine. Did I want to talk to her? I told Rae that I didn’t, that we liked Dr. Kahn and wanted to follow his advice for now. We were starting Shepherd on a course of naproxen, a relative of the nonsteroidal anti-inflammatory ibuprofen. We didn’t want to mess around with something that might not work when conventional treatments were known to be effective. What I thought that day but didn’t say to Rae was, We don’t want to waste time talking to a kook.
Shepherd’s arthritis spread while he was taking the naproxen. Joints in his fingers ballooned, and he developed nodules on his knuckles, which were suggestive of serious rheumatic disease. He started wetting his pants more frequently because, we realized after too much time, his fingers hurt so much that he couldn’t pull his pants down.
We went back to Dr. Kahn, who said it was time to confront the painful inflammation in Shepherd’s joints with methotrexate, a commonly used treatment for juvenile idiopathic arthritis.
Inflammation is supposed to be our friend. The heat, swelling, redness, and pain we’re all familiar with are usually signs that this important immune system function is doing its job of fighting off an infection or helping us recover from an injury. Many different immune cells take part in inflammation. Some induce pain, perhaps to force us to rest and heal. Others—our white blood cells—attack bacteria or other foreign matter directly by gobbling them up. Inflammation can be incredibly destructive—that’s how it defends us from invaders so effectively. But sometimes our immune system goes haywire and starts striking innocent tissue. When inflammation is inappropriate in this way or doesn’t know when to stop, it becomes our enemy.
This is autoimmune disease: immune cells fighting against oneself. Excessive inflammation can also increase our risk of cancer and is a factor in many other diseases including obesity, diabetes, and heart disease.
Methotrexate works by suppressing the immune system, which mistakenly attacks the joints of children with JIA. In significantly higher doses, methotrexate is used as chemotherapy. Even at the dose Shepherd would be getting, a minuscule fraction of that, methotrexate could still cause nausea, dizziness, and drowsiness. The list of more serious possible side effects was terrifying to me—including liver damage and increased risk of lymphoma—even though Dr. Kahn told us that those risks were practically nonexistent.
Shepherd had polyarticular JIA—meaning five or more joints were affected. Children with this kind of arthritis are unlikely ever to outgrow it; Shepherd would probably be on medication for life. What were the long-term effects of taking this drug on three-year-olds? This question tended to visit me in the middle of the night, when Dr. Kahn’s reassurances that methotrexate was safe gave the least amount of comfort.
As my anxiety about the medication churned, I talked to my friend Andrea about it. She’s a doctor. I knew what she would say, and I needed to hear it. She told me, “I don’t think you have a choice.” Somehow, as I suspected it would, hearing that the decision to give Shepherd methotrexate was out of my hands brought some relief. Though the effect was fleeting, for the time being at least, I couldn’t worry about what I couldn’t control.
The pills were orange, Shepherd’s favorite color. When I first gave them to him, he was enthusiastic about taking them. The real coup: His twin brother, Beau, didn’t get to have them. But watching my son gulp the pills down defeated me. It reinforced an image of Shepherd as sick, forever dependent on a drug I felt afraid of, however unreasonable his doctor might tell me that fear was.
But this was our only choice.
Unless it wasn’t.
One morning, while the boys were at preschool and Darin was out of the house, I decided to call Char Walker. She answered the phone, and within minutes I was crying to this woman I had never met. It was my first experience with the healthcare underground, women and families supporting each other, offering possible leads and kindness when traditional medicine wasn’t enough.
Char told me that when her son Shane was an infant, only a month old, he started waking up seven or eight times a night screaming and crying, which he continued to do for a year and a half. He didn’t have any symptoms that she could see. What was wrong? Soon she was crying every night, too. And then, at around eighteen months, he learned to talk and told her what hurt: his leg, his hip, and his wrist. Once they had the diagnosis of JIA, Char realized her son had probably been in pain every night of his life.
Char was a social worker and massage therapist who worked with cancer patients at NorthShore University HealthSystem outside Chicago. When Shane’s rheumatologist presented methotrexate or steroid injections as the only options, Char was horrified.
Because she worked in the integrative medicine department, which combined Western medicine with complementary interventions developed outside the mainstream, she knew there were other things to try in order to combat inflammation. And she wanted to try them first.
Char told me that Shane’s rheumatologist disapproved of her decision to delay drug therapy. Char said, “It was like, ‘What the hell are you doing, lady?’ ” She remembered the doctor telling her, “I don’t think it’s going to work. I’ve been doing this a long time.” Char said the doctor warned her that she risked stunting her son’s growth and damaging his joints, not to mention prolonging his pain. (Shane’s rheumatologist declined to speak to me on the record, though she had Char’s permission to do so.)
Char dug into medical literature databases. From a naturopath she learned about an anti-inflammatory Chinese concoction called four marvels powder, which is made from two roots, a seed, and the bark from a decorative tree. Naturopathic medicine combines healing practices developed hundreds of years ago with more modern primary care. Emphasizing stress reduction, nutrition, and herbal supplements, among other interventions, the idea is to optimize the health of the body as a bulwark against disease.
Char also sought guidance from her colleague Dr. Leslie Mendoza Temple, the medical director of NorthShore’s integrative medicine program. Dr. Mendoza Temple had experience with treating inflammatory arthritis. Char had come up with an extensive diet and supplement regimen. While wary of the risks, Dr. Mendoza Temple was comfortable giving the program a three-month trial. “I tried everything that I knew was safe to see what would work,” Char told me.
I grabbed my pen and paper and started taking notes. No gluten, the protein in wheat, barley, and rye. No dairy. No refined sugar. No nightshades—a group of plants that includes potatoes and tomatoes—which are thought by some to be pro-inflammatory, as is sugar. Every day, Shane took a probiotic, those supplements of bacteria that are either the same or similar to the microorganisms found naturally in the body. Plus two tablespoons of sour Montmorency cherry juice and at least 2,000 milligrams of omega-3 fatty acids from fish oil, for their anti-inflammatory properties. Instead of naproxen, Shane took a combination of ibuprofen and Tylenol to lower his overall intake of nonsteroidal anti-inflammatories, which can be hard on the gut. And a quarter teaspoon, daily, of the Chinese herbal medicine called four marvels powder.
Char said she believed that her son’s arthritis was caused by something I had never heard of before—leaky gut syndrome, a concept that had been accepted in alternative circles for years despite a name that asks you not to take it seriously. Leaky gut is based on the idea that inflammation in the gut damages the intestinal walls. As a result, the normally tight junctions between the cells that make up the intestinal wall’s lining loosen. Then, like a careless bouncer, the barrier starts letting through undesirables, various proteins or bacteria that would normally be turned away. Once they’ve breached the wall, the hypothesis goes, these materials make their way into the surrounding tissues where they don’t belong. These uninvited guests set off the immune system, which mounts a defensive, inflammatory reaction to get rid of them. The problem is that, in this scenario, instigators keep coming through. So rather than wage a quick and dirty fight that limits destruction, the inflammation is dragged into a sustained, drawn-out war.
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