Idiopathic: an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.

In the late 1990’s, the official classification “Juvenile Rheumatoid Arthritis” was changed to “Juvenile Idiopathic Arthritis.” In layman’s terms, the medical community essentially stated in the very naming of the disease that it does not know what triggers arthritis in children. Further, with the paltry research funding currently going to JA, we are not likely to have these answers any time soon.

Against this backdrop, we would like to address the recent New York Times article The Boy With a Thorn in His Joints both on behalf of JAA and as parents of a child with juvenile arthritis.

For those who haven’t read it, the article is written by Susannah Meadows, a regular contributor to the Times who writes the Newly Released column. Ms. Meadows chronicles her family’s struggles when her then-three-year-old son, Shepherd, is diagnosed with juvenile arthritis. Though she initially accepts her doctors’ prescription of NSAIDs and then methotrexate, she quickly begins to get cold feet, resists her doctors’ recommendation to increase the dose of methotrexate, and seeks out alternative treatment in the form of a gluten and dairy-free diet for her son, coupled with a Chinese remedy called “four marvels powder.” Six weeks after treatment begins, the boy’s disease goes into remission.

While the author makes the disclaimer that she doesn’t know for sure if it was methotrexate or dietary changes that brought about Shepherd’s remission, she states that she believes it was the latter.

The story is well written and has an undeniable emotional pull, especially for those of us who have lived through something similar. The depiction of what a family goes through after their child is diagnosed with juvenile arthritis, and how the strain affects the marriage, hit very close to home for us. Identifying with the author, we followed her family’s journey almost as if it were our own … right up until the part where her son suddenly went into remission after just six weeks — a fantasy we had when our daughter, Sophia, was first diagnosed that’s now a distant memory.

Even though we celebrated Shepherd’s remission, we find aspects of the article troubling in several important respects, made all the more so because this six-page spread in the New York Times is the most prominent coverage that juvenile arthritis has received since we can remember. From the outset, let us state that we are in no position to judge whether Shepherd’s arthritis was triggered by problems in his gut, as Ms. Meadows strongly suspects in the article. Indeed, JIA, by definition, stems from an unknown cause. Shepherd tested negative for celiac, a rheumatic disease known to be caused by gluten intolerance. That said, anecdotally, we know several children with JA and adults with RA who have had positive results with gluten-free or other dietary regimens in addition to their medication.

But the implied promise in Ms. Meadows’ article — that, like her son, many others could free themselves entirely from lives of permanent sickness and dependence on pharmaceuticals by being willing to think outside the conventional medicine box — is a dangerous and slippery slope. This is not a peer-reviewed medical journal article about a scientific study with proven results. Given its prominent placement and the ensuing hubbub, it’s easy to get carried away with excitement and forget to see the article for what it is: an anecdote, one story among many, and entirely subjective.

While the prospect of weaning our kids off of pharmaceuticals is extremely enticing, a recent response to the New York Times article in Slate magazine suggests that Shepherd may actually be taking strong medication. The chemicals inside the Chinese “four marvels powder” include quercetin, berberine, and achyranthine. Quercetin, though shown to have anti-inflammatory properties, kills mice at about the same dosage level as methotrexate, suggesting that it is far from benign. Berberine, meanwhile, has been linked to brain damage in infants. What’s more, Ms. Meadows is giving her son these chemicals via the “four marvels powder” in unspecified quantities daily, and there is no current scientific knowledge on safety, proper dosage, or side effects. As the Slate article proposes, Ms. Meadows’ phobia of pharmaceuticals may be blinding her to some of the realities of her son’s condition.

In addition to gluten, for example, Ms. Meadows points to antibiotics as a possible culprit for her son’s subsequent flare-ups (which, one might note, would indicate that he’s not truly in complete remission). What she doesn’t consider, however, is the possibility that the underlying infections that required her son to be treated with antibiotics triggered the flare-ups, rather than the antibiotics themselves. It stands to reason that when an infection is present the immune system is activated and, in addition to attacking the infection, it may attack the joints, causing a flare-up.

This theory, which was proposed by our pediatric rheumatologist in Sophia’s case, has been consistent with our experience. Sophia, who has been in a medicated remission for most of the past three years, has experienced mild arthritis symptoms with almost every major infection, regardless of whether she has taken antibiotics. It may be that only infections serious enough to require antibiotics are problematic for the author’s son. This is not to say that antibiotics are harmless. However, they serve a purpose, and let’s not forget that prior to antibiotics people routinely died from what are now treatable infections.

Similarly, prior to methotrexate and, more recently, biologic medications, children with juvenile arthritis were far more often crippled and wheelchair-bound. What were regarded as miracle drugs when they were discovered are now coming under suspicion as our society trends toward more “natural” remedies. Whether or not there is truth to the leaky gut theory, and there may be in some cases (there are over 100 forms of arthritis, and possibly a similar number of triggers), discounting proven medical treatments that have changed the face of this disease, as the author does, would be rash. The reality is that these are the only clinically tested treatment options and likely the best hope by far for most JA patients.

We worry that parents of newly diagnosed patients in particular, already fearful of the drugs their child is being prescribed, will latch onto Ms. Meadows’ overarching message to be wary of conventional medicine and may forego treatments critical to giving their child the best chance at remission. An important 2011 study presented at the Annual Meeting of the American College of Rheumatology demonstrated that early and aggressive treatment improves the odds of clinical remission for children with arthritis. What’s more, the study suggests that the longer the disease is allowed to remain active, the less likely it will respond to drug therapy. In other words, children whose parents are hesitant to pull the trigger on early, aggressive treatment may miss their best window of opportunity to achieve remission.

As parents, we understand the inevitable qualms of starting up not-entirely-benign treatments, particularly ones with scary potential side effects and black box warning labels. However, in Sophia’s case, her uveitis was already so severe at diagnosis that saving her vision was paramount. Our doctors told us up front that if she did not begin methotrexate, Remicade, and steroid eye drops (all of which were quickly increased to the FDA maximum guidelines), Sophia could be blind in a matter of months. So, we felt that pursuing an alternative course of treatment would have been patently reckless. In the ensuing years, we have never tried dietary changes, mostly because the medications have been so effective that it seems superfluous, and we hate to deny our child cupcakes when she already undergoes so much poking and unpleasantness.

While we have no personal experience with alternative approaches, we know families who have experimented with diet in lieu of medication in the hopes of finding the cause of their child’s autoimmune disease, all to no avail. Even the comments section following the article contains accounts from people who have tried very similar approaches to Ms. Meadows’ (though without medication) and sustained irreversible damage in the process. Of course, all of these accounts are as anecdotal and subjective as hers, but the point is that results can vary widely. Ms. Meadows’ story may be one of those best-case scenarios, one of those rare stories that we cling to but which, unfortunately, does not represent the course of events for most of us.

At the same time, we absolutely appreciate the hope that an article like this can give. Personally, we believe that alternative medicine used in conjunction with conventional medicine may be very effective for some people. Further, we believe that conventional medicine has a long way to go in terms of testing, studying, and integrating complementary medicine. Few peer-reviewed scientific studies have been done on the connection between diet and autoimmune disease control.

And this brings us to our most significant concern. As the founders of JAA and as parents working to raise the profile of juvenile arthritis, we deeply worry that this article may ultimately do the cause a disservice by allowing uninformed readers to think that this is a disease that can be managed with diet and thus doesn’t require or deserve further research. If the general public takes from this article that juvenile arthritis is simply a food intolerance or allergy, as opposed to a complex, serious disease on the level of juvenile diabetes or cancer, there may be lasting repercussions for the entire JA community for years to come.

Indeed, we have personally received dozens of emails over the past week from well-meaning friends eager to alert us that, perhaps, Sophia can simply adjust her diet and finally come off the Remicade and methotrexate she’s been taking for three-and-a-half years. And the author has been widely praised in the comments section for trusting her maternal instincts over her doctor’s recommendations. However, if this were an article about a mother favoring dietary changes over conventional treatment for her child with cancer, we suspect that the response would be different.

While it’s exciting to see some attention focused on our children’s disease for once, if we are going to truly raise awareness, we need to think about the messaging. Currently, juvenile arthritis receives about 1% of the research funding going to any other major childhood illness. This is due in part to lack of awareness and the erroneous misconception that it’s not a serious disease — a viewpoint that might be encouraged by this article, which, incidentally, was one of the most emailed articles in the New York Times this past week.

If we want to change the status quo, we need to emphasize the seriousness and complexity of this disease, the need for more research (including research into alternative approaches), more doctors, more treatments, and certainly not depict juvenile arthritis as some form of food intolerance. After all, whatever the cause and solution to our children’s disease may be, we won’t have any real answers without further research, and we won’t close the funding gap until the general public recognizes juvenile arthritis as being as worthy a cause as juvenile diabetes or cancer.

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