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.
Sincerely,
Rochelle
Lentini
Parker’s,
13 year old with systemic on-set JIA, mom
Parker’s
story on our family blog: www.purpleplayapower.blogspot.com
