Gut Reaction….

gutreaction

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.

Advertisements
This entry was posted in Alternative Therapies, Anxiety, Dealing with the public, Diagnosis, Education, Medications, Remission, Uncategorized and tagged . Bookmark the permalink.

23 Responses to Gut Reaction….

  1. Steve Bertram says:

    Colleen,

    Your passion to help cure this horrific disease has both my wife and I cheering for Caitlin and you and Dave’s dedication for the cure.

  2. Wade B says:

    Colleen:

    As always, thanks for your insight and perspective. You are a rock of support for many parents, that is for certain!

  3. Katie says:

    I Love this Colleen. Thank you for sharing another side the JA Story.

  4. Marie says:

    This is an extremely well written article that is very supportive of families in crisis. Any chance you have considered sending this in to the New York Times as an adjunct to the article they posted?

    • JIAmom says:

      Thank you Marie! I actually gave it a lot of thought… but it looks like I waited too long. I went to the web site, and it appears the comments have been closed on the article. I’m hoping that the AF and the ACR manage to get an official comment published. I feel really badly for the doctors mentioned in the article as well. Naturally, they are prevented from responding because of HIPPA protections for the patient.
      Reading the comment thread, most of the comments were quite supportive of alternative medicine and seemed quite opposed to traditional treatment. I was a little bit afraid, frankly. I wish I hadn’t been – because people really need to know a different side of this journey. And I’m guesisng it will be awhile before we make the NY times again!

  5. Rochelle says:

    I so appreciate you sharing the “other side” when LIFE is on the line. I am one of those parents who have struggled immensely with choices all with the hope of keeping my son alive. Love you!

  6. Rosann says:

    Colleen, THANK YOU for this.

  7. Angie says:

    Another great post! Once again, you have beautifully articulated the frustrations of parenting through these decisions. Thank you for saying it so well.

  8. Eric S says:

    My wife and I too faced the challenges and ‘pain’ of the difficult decisions every parent has to make when their child is diagnosed with a chronic disease. However, even though we had no idea what was the ‘right’ thing to do, and constantly questioned the medications we gave our daughter beginning at 2 years old, and cried as we tried to get her to take the pills or the regular shots, we committed to follow the advice of our wonderful pediatric rheumatologist. Today, as my daughter who just turned 15 last week, is healthy (medical remission), what I said to others over the course of the years rings true, ‘We are blessed that she was diagnosed at this time and not 10 years earlier because the advancements in medicine give our daughter hope for a future.’ Thank you for your astute response and being a voice of the vast majority of us living this journey.

  9. I also appreciate this. Of course, we are on the bad side of the fence here, too. I would love to take a more natural, holistic approach to enhance our current treatment plan. Obviously the author did not delve into any of the systemic diseases, including the crazy mishmash that my daughter has. Do I really want to risk my daughter’s internal organs turning rock hard because we don’t want to medicate? Not so much. I do believe that some people really, truly do benefit from diets like the GAPS diet. We are currently working on cutting out processed foods and gluten, but really… when you have a child that can’t control anything else in life but diet, a child that doesn’t like anything and is extremely resistant to trying new foods… what do you do? It will take probably 2-3 years to get Emily’s diet to where I want it. Can you imagine the destruction of her body- joints and internal organs alike- without her medicines??? I can. No thank you.

    Thank you as always for being our voice. ❤

    • Betsy says:

      Amen! It’s hard to make her eat something she doesn’t like or take another pill (supplements) when the rest of what she is dealing with is so miserable!

  10. Stacy says:

    Thank you, thank you, thank you for this response!!!!

  11. Gibby says:

    What a wonderfully articulate article. I’m the parent of a young man who sadly suffers from JIA and chronic bilateral uveitis. And yes, his body has suffered some damage as a result of long term treatment. However, he can walk (a bit) and he can see (a bit) because of that very same treatment – more importantly, he lives and loves his life a lot. I’ve shared your blog entry and commented that whilst it’s important to celebrate the path that some have cleared away from the rock and hard place, there should also be compassion for those who remain there. What seems like shadow to some, may be shade to ohers. Thank you for expressing shared pain so eloquently.

  12. duaxfam7 says:

    Thank you for your response. We are deep in right now with my daughter she was diagnosed with ERA last year at 9 years old. She is taking Salfasalize and Celebrex now after changing medication several times with still not much change. The next step is injections and after reading this article that the New York times put out I’m just so confused on what to do and how to even start a diet with no gluten, dairy or sugar. I tried it in the beginning and it is very hard. Stressed an tired all of us.

  13. Kristy Dieter says:

    You have no idea how uplifting your response to this article was for me. My 6 year old son was diagnosed with Systemic JIA in January 2012 after two years of autoimmune struggles. Currently we are trying to figure out what drugs work for him while fighting major infections and other complications. Educating ourselves about arthritis and medications for Jack has become my new full time job. 🙂 After 3 years and 11 doctors we finally have faith that we are on the right track to better health. The article made me question ( something I often do) the treatment plan… Maybe we should change his diet?… ARE we on the right track?.. Your response to this article reminded me that every child is different and sometimes things are not that easy. Thank you for your insight!

    • jiamom says:

      Kristy- I just wanted to say that I’m sorry we had to meet through the shared experience of juvenile arthritis… But now, I consider us family. I hope that one year after diagnosis and several years of struggles, Jack is doing much better now! I appreciate the supportive comment – it’s been a surprising few weeks of “feedback” – and I’ve been caught off guard at some of the things I have been accused of. I really started just looking for a rock to crawl under! Hearing that I have helped in some small way helps tremendously – so I appreciate yours – and ALL the comments. Best hopes for you, Jack and your whole family – and please know that I am just another JIA mom here – if you ever need to chat.

      • Kristy Dieter says:

        I can only imagine the “feedback”. Sometimes the not so wonderful world of opinions on the Internet are frustrating. Provoking emotion and debate on an important subject such as JIA is beautiful! Everyone is thinking, questioning, collaborating and fighting all in the name of our children. So…good for the Mom questioning the doctors by trying alternative routes and good for you for being an advocate for parents like us that may not have another option. 😉 We Moms Rock!
        Jack is not doing better yet but we are praying things turn around soon. As I am sure you know all too well this road has been rocky and I have felt helpless. I decided to get involved with the Arthritis Foundation to better educate myself, find support and.. Well..help! And this is where I found your blog.Thank you for adopting us into this family!

  14. Anna says:

    Thank you so much. I’m from the Netherlands and friends of mine showed me the article in the NYT. At first I thought, well, it could be possible. Maybe we have to try. But as many of the comments said, the boy also uses methotrexate. Your last paragraph is such a support for us. Of course we ask ourselves every morning, as we try to give our three year old daughter four different medicines, is this the right thing? But she is getting better and better, she plays, runs and makes jokes. And our rheumatologist says that since the biologicals there are hardly any wheelchairs in her waitingroom anymore.

    It’s frustrating that it’s such a difficult disease and we are not doctors, we can’t say why things work. But something is working, that’s for sure!

  15. KCash says:

    You were RIGHT ON in your response to the article. And I think adults will also benefit from your post, and your completely fair ‘rebuttal’. I have RA and do acupuncture, but only as a SUPPLEMENT to the treatment (which includes NSAID’s and Biologic drugs, like Humira) that my Medical Doctor has chosen for me. I had the choice to make that decision by myself, as an adult… but a child has no power for decisions made on their behalf, and we, as parents must really explore all the information given to us and put our trusts in the experts: and there IS a reason Medical Doctors go to school and are in training for so many years. It is best to listen to them first, and not jump on a bandwagon that something holistic cures everything. It’s easy to do – BELIEVE me, I get it. I am tired of chemicals in my body and think Acupuncture is a toxin-free treatment. And it HAS given me relief over the years. But I shouldn’t replace my prescribed treatment with it alone. And I have in the past. It’s a draw I keep returning to, to want to keep these immune-supressing meds out of my system. And if my child had to be on these injections and infusions…. well, I cannot even imagine as a parent what that must be like, I keep praying that my boys won’t get the Ankylosing Spondylitis like I was first diagnosed with before RA. It brings tears to my eyes to even think about them the suffering chronic pain like I have as a CHILD. But I think when dealing with a systemic disease with no cure, it’s best for us not to make these kind of treatment solutions on our very own. You did a GREAT job. Hang in there, your child is lucky to have you. Truly.

  16. Hi Colleen,

    I truly appreciate your response to her article. As I was sitting here reading the NY Times piece, I continuously found myself confused and shaking my head. See, I have had JRA (what JIA was known as when I was diagnosed at the tender age of two in 1982) for almost my entire life, and have been in and out of doctors’ offices and on and off of so many medications, I cannot even count (including doses of gold in the 80s and Methotrexate for 10 years). Of course, if we could ALL benefit from treating ourselves naturally, ALL doctors would recommend such a non-invasive treatment, but alas, we cannot, as this disease is NOT forgiving and quite dangerous if left untreated on a molecular level. Yes, I have tried the holistic route, and still approach my body with kid gloves, eating only foods that I have prepared myself or are made with local ingredients when dining out, but that does not mean that I can skip my weekly dose of Orencia, and act like there is nothing wrong. I am sorry for rambling, but I worry for this author’s child, she must keep an open mind; we are lucky for the funding for research that we do get, so the resulting treatment options of this research cannot be shot down so quickly, especially when Methotrexate is not the only source today. Thank you and look forward to following your posts in the future!

  17. Debbie Matvey says:

    Colleen, This is the first blog of your that I have seen, and I commend you for really hitting the nail on the head with this rebuttal. I would, however, like to add something else that concerns me about all of these types of articles. The truth is that we need more child rheumatologists out there, and who is going to pursue a field like this if the general populace believes that there is no real disease – only poor eating habits? I feel that this is another layer of this issue that needs awareness.

  18. Tracy says:

    Thanks for this blog and sharing your story. Can you tell me more about the ‘personality change’ you mention? Our 12 year old son is newly diagnosed (May of 2013) with JIA-ERA and seems to have an anxiety or panic attack a couple of nights before a flare. Then during the flare he is very down– which is to be expected but I wonder more about a possible precursor of anxiety before a flare.
    Thanks,
    Tracy

  19. kishnrae says:

    Thanks for this post. My son, who is now 4.5 was diagnosed with JIA just after his third birthday. It was in 13 or more of his joints and soon after we started him on Methotrexate he stopped walking. I am thankful for a wonderful Rheumatoid specialist and great physical therapists who got him back on his feet after six months of therapy. He’s running now thanks to Methotrexate, Enbrel and lots of prayer! We do struggle with giving him such strong meds (and hate the anxiety the shots cause him) but they have given him his life back – we have had people, who can’t understand what we have gone through, get angry that we aren’t choosing homeopathic methods instead of the meds and tell us we are harming our son. I have learned that I have to go with my gut on this. It’s just nice to read that someone understands. Thank you:)!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s