I’m sure you’ve probably seen the article in NY Times magazine, published two days ago. It was the most e-mailed article yesterday, and certainly generated a lot of buzz among those in the juvenile arthritis community.
In the article, a mother Susannah, chronicles the story of her three-year old son Shepherd’s diagnosis with JIA and their subsequent treatment journey. I have to pause first and say how great it was to see this story, if only because it actually got out the word that such a disease exists! When 300,000 children suffer from this disease, the leading childhood chronic illness and there is very little public awareness, simply seeing the story in the NY times is somewhat a victory.
But that’s about where my elation ends. And as a mother of a child that has been struggling with this disease for almost 12 years, I feel somewhat qualified, if not entitled, to offer a different perspective to the author’s assertion that leaky gut caused the arthritis and dietary changes cured her son’s condition.
Do I believe it’s possible? Yes. Possible. And let me say right off the bat, I have plenty of friends that follow gluten-free for health, and I praise them for it. I admire their dedication, their tenacity, and their willingness to go the extra for what they believe in. Because it’s not easy, even though it is gaining in awareness and acceptance.
However, I think the bigger issue for me is that the author’s somewhat myopic understanding of the disease and her experience with treatment might give the wrong impression to others who find themselves in the extremely unenviable position of having to make these serious health decisions, while struggling with the futility and helplessness of watching their child in pain. Just because gluten intolerance may play a part in the pathology of her son’s disease, does not prove a rule for the whole. To be fair, the author admits as much. It’s one of the frustrating realities of the disease, that cases are not identical.
Let me give you my example. I completely related to the author’s description of her son’s condition at the beginning – walking with a limp, change of personality, loss of appetite, sapped energy. I certainly have experienced those things throughout the course of my daughter’s illness – all after we were already treating the disease. But in the beginning? It was a bit more critical for us. Because her disease is systemic, we were dealing with not only active arthritis in ALL of her joints (and that is not hyperbolic. I literally mean fingers, toes, wrists, ankles, knees, elbows, hips, back, neck, jaw…all of her joints), but she also had a high spiking fever of up to 105 degrees several times a day and had organ involvement. She had pericarditis – swelling around her heart. We were fortunate that she also did not have uveitis, swelling in the eyes, which can lead to blindness if not treated aggressively.
So.. I think its’ safe to say that I know what it’s like to have to make tough medical choices for my daughter. And I completely empathize with the fear that the author describes, waking up in the middle of the night worrying about side effects and what the disease will mean for the life of a child. And it’s also safe to say that we have always been open to complementary therapies. It is literally impossible to ignore the topic, because the minute people hear the diagnosis, you are flooded with well meaning advice.
Had we, her parents, at the moment, not trusted the advice of the medical professionals and the well documented best practices for treatment of her disease – she would not be here. I truly believe that she would not have survived the disease. Any wavering in our course, and delay to allow us try out less aggressive and “safer” therapies might have literally killed her. Certainly my daughter’s case is not typical. However, for another child with non-systemic disease affecting fewer joints, the delay might lead to permanent damage – Irreversible changes in joints that could limit mobility, productivity and impair a child’s future.
My doctors, like the author’s doctors, have generally employed an “if it offers no harm” policy to any idea I have brought to them. We too have tried alternative diets, omega 3 supplements, and a host of alternative therapies.. We did TRY – with full willingness to embrace whatever would cure our daughter – in coordination with our specialists. And that last part, I think, is the most important part. While the author freely admits that her anecdotes do not qualify as case study, (and by the way, I definitely agree with her that there should be more scientific, peer reviewed studies on the connection between diet and disease), there are plenty of case studies that prove that early, aggressive treatment is the best shot at controlled disease or even possible remission. The guidelines for treatment offered by the American College of Rheumatology clearly indicate the same.
When my daughter was diagnosed, there were no biologics on the market yet. As the drugs have been approved, we have been eagerly waiting for them. It’s been a frightening thing to give my child medicines off label, before they are even FDA approved for children. It’s not easy to give your child a painful daily injection, and have them run and hide in the closet, screaming in tears. It’s not easy, even when you truly believe in your heart that you are doing the best things for them. But when your child’s life is on the line, and they are suffering suicidal thoughts at the age of 9 because they deal with chronic pain, it’s amazing what you can force yourself to do.
Had my daughter been diagnosed this year, instead of almost twelve years ago, things would have been different. Control would have come sooner. There are so many more options now, so much more data and experience with these medications. This is the very reason that when you see pictures of camps for kids with arthritis, twenty years ago most of the kids were in wheelchairs or with canes and walkers, and now – you cannot see the disease on the surface as easily. Kids are running, swimming, playing and being kids. These medications (the evil pharma so many people commented on at the end of the article) are the primary reason that the diagnosis can mean something far less tragic and much more hopeful than it did even a decade ago. Imagine if the RA patients that the author mentioned in the article, who fasted and ate a clean diet on a farm twenty years ago had had the option of these medications instead?
For us, our story ends in a very similar way. My daughter is also in remission (and by the way, she eats gluten). Though it was a long road to get here, and she carries two titanium hips as a permanent reminder of our journey thus far (another outcome that would be different with a diagnosis today), she is much like any other healthy, active teenager. Just like the author believes that the plan she followed and the four marvels powder is the reason for their outcome, I firmly believe that it was the care of our board-certified pediatric specialists, and the advancement of medicine that lead to ours.
I try to put myself in the author’s shoes. I try to imagine that I believe that my child’s prognosis has changed completely, and the fear for his/her future is replaced by joy, promise and hope – because I followed my instincts and took a less traveled road, with little support, and found the promised land of remission. I don’t have to imagine the hours and days of research she has done, because we have done the same. I don’t have to imagine the hard choices, because we have made them. Don’t have to imagine the depression, because we have been there. I imagine that I would be singing it from the rooftops as well. I would want everybody to know, so that it might work for them. And believe when I say that I hope it does work for some people.
But I can’t help be a little insulted by the quiet, whispered inference that I am somehow blindly following poisonous advice instead of exploring less damaging options for my child. Self-flagellation is a common pastime for parents in my community of juvenile arthritis. A healthy dose of beating ourselves up for giving our kids some of these medicines, wrapped in a nice warm blanket of guilt. I don’t think any of my peers need any additional help with this. We’ve got it covered, thanks. That’s what left me crying, after reading this article, I think. Maybe a few of the tears were of joy, for a little boy who will hopefully never endure what my daughter has. But most of my tears were for the parents out there, who will be using this information to whip themselves more for the choices they have made or are afraid to make, and for their children, who may have to suffer some needless pain (and possible damage) while a long shot bet is played out.