Saturday, February 23, 2013

Dear Dr. Oz…

I sent this letter in response to the much debated “Dr. Oz” episode that aired in response to the article:  “The boy with a thorn in his joints” (NY Times magazine, February 3, 2013,  The Dr Oz episode can be viewed here:

Dear Dr. Oz,
First, I must share; we were extremely excited to see your episode on February 21 with regards to the young boy named Shepherd and his mother’s article in the New York Times.  The topic of JIA is finally being discussed on national television.  For the 300,000 families searching for the cure, we will take every bit of information we can to help guide us in this journey.  This mom’s willingness to share “her story” opened a door to a much needed discussion.  After much contemplation, a conversation with our son’s doctor, and many mixed feelings from my son who sat beside me and viewed this episode with me, I have decided to share our perspective on juvenile idiopathic arthritis (JIA). 

I am certain you have gotten many viewer comments on this particular episode.  It is a topic that needs to be discussed.  I am sure you have folks who are happy, angry, and who have very mixed feelings.  As a parent and a professional consultant in the field of special education, I try to view things from multiple perspectives while problem solving for the best possible solutions.  What I believe your episode showed is one family’s point of view.  I am also sure others share this perspective and those families who have chosen alternative treatments for their children are probably thrilled to have their voices heard. 
However, this family’s experience is not the same as ALL families with a child with JIA.  There are over 100 forms of arthritis and although “arthritis” is the commonality, there are differences in features, complications, and treatment for a reason.  Also, some children are misdiagnosed because there are multiple medical issues that result in arthritic symptoms.  It may very well be possible that some children are misdiagnosed with JIA.  All of this I am sure you are aware of as a medical professional.  The fact that “idiopathic” means of unknown origin negates the fact that Shepherd’s arthritis was idiopathic but rather due to “leaky gut”…It sounds like this family knows the origin of his symptoms.  How incredibly fabulous for this family and it is wonderful that they found something that works even if they are uncertain if it was the methotrexate, the Chinese cherry juice, the diet, other treatments or a combination of….for this family it means that life can return to “normal” and this child can lead a life of a “typical child” running and playing…as it should be…for ALL children.  I am incredibly happy for this family.

I just wish that someone would speak up for the other 300,000 children still suffering each and every day and show a broader perspective…one that the majority of parents with children with JIA face.  Every family has a story and these are our dear children.  I share just a quick snapshot of our story…

Our son, Parker, was diagnosed with allergies (environmental and food) along with asthma at 18 months old but besides that he was an athletic, active, happy child who at the age of 8 started having multiple symptoms that many doctors could not piece together.  He had intermittent fevers that would spike high to normal… back to high all within the same day.  He had intense full body pain, visual issues, and weird rashes that would disappear and reappear.  After over a year of this, then his joints started to swell (however we didn’t know what to look for prior to this, so there could have been minor swelling).  The specialists started with gastro-intestinal tests because they told us it could mimic all kinds of things.  He was also tested for Lyme disease and lymphoma and a whole array of other diseases. 
It wasn’t until a year and 7 months later that we got the diagnosis of systemic on-set juvenile idiopathic arthritis.  Parker is now 13 years old and has experienced daily pain, involvement and swelling in all joints (ribs included), raynauds, pericardial effusion (3 times), pluersy, lung obstruction and restriction, myositis, psoriatic features, lymph problems, gastritis, vasculitis, vision issues, osteoporosis, and hypogammaglobulinemia.  Parker wants you to know, “My arthritis impacts my vital organs, like my heart and my lungs and knowing it could cause death is scary.  Most people don’t understand that about JA.”  Our days are filled with doctor’s appointments, medications, scans, blood work, hospital stays, therapies, counseling, surgical procedures, shots, infusions, splints, hospital homebound school, and yet we also find time for fun, togetherness, and celebrating simple things in life.  We are a happy family with a major struggle. 

I hope that you know that your show impacts many.  The message portrayed in this particular episode concerns me a great deal.  We already have had well intended family, friends, and acquaintances share the article and your views with us.  My initial thoughts were of great concern for all the families still struggling in making treatment decisions…I also felt I had to defend our decisions to use evidenced based medical treatment, many of which have failed my son, but we recognize he is not the “typical JIA story”.  Then I had to re-assess my reaction to this episode.  Yes, it was hard to listen to…but now people are talking…we need people to talk.  We need our children to be supported.  They still yet do not have a voice…so we all need to continue to speak up on their behalf.  I am just one voice, with one perspective, but maybe it will give you yet another lense through which to view this disease that impacts so many strong, hopeful families….who are still looking for their cure.
Rochelle Lentini
Parker’s, 13 year old with systemic on-set JIA, mom
Parker’s story on our family blog: