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, http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=all&_r=0).  The Dr Oz episode can be viewed here: http://www.doctoroz.com/episode/disease-your-doctor-cant-diagnose

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

Our Son’s Body is Under Attack But He is a Fighter

Michael and I have been processing a lot…should we blog….shouldn’t we blog… We know that people who care about us want to know what is going on with Parker, but we have been processing some hard information lately.  After a family talk, we decided it was time we share…but please know this is hard.  We have been working through a lot and we have been careful with our words because we don’t ever want to over burden or worry our oldest son, Logan, especially since he has been fighting his own battle with vicious migraines.  I am happy to report that these migraines are getting more controllable and along with his medicine and infusions he is now quite good at biofeedback.  His therapist is amazing and we are very impressed with this technique.  Last Saturday he got a migraine, took his meds, and did biofeedback and worked through the migraine and it went away.  This is pretty major and we are so proud of him.

One reason we haven’t blogged lately about Parker is we wanted to first find out how Logan is processing all of this.  He is in a better place now and he wants us to continue to blog.  Then there is Parker, he has been processing some very intense and heavy thoughts because we got some additional scary news about a week and a half ago.  We are quite proud of Parker too.  He processed his concerns aloud with me and his counselor.  He too wants us to share what is going on.  Michael, the boys, and I have prayed and talked and processed and we feel that others need to know because we need support; we want others to learn about the various paths this disease takes; and we need help raising funds so that one day there will be a cure for children with juvenile arthritis.

Parker has complained for quite some time that his chest hurts.  In fact, he has had chest pain throughout this battle against systemic JA.  Several times it has been costocondritis (there are joints in the rib cage and they can become inflamed and painful), other times it has been the pericardial effusion (swelling of the heart lining), and sometimes it was his asthma.  But even after his last round of pericardial effusion he has continued to complain.  And when we were at the rheumatologists this last month he was having the pain again so they ordered a stat echo cardiogram.  It came out fine.  Thank God.  So then we talked about how maybe since we have been trying to decrease the steroids, that maybe it was his bodies way of saying “hold on…I like those steroids…I am use to them…now I have to work harder to breathe…”  So we thought maybe it was causing his asthma to flare because he is so steroid dependent now.  But, he also had been on this dose of steroid for over a month now. 

We decided it was time he see a pulmonologist to get help with decreasing the steroids.  Because Parker’s rheumy is about 2.5 hours away, she suggested we go to our local allergist (who knows Parker very well) and get a referral to a local pulmonologist that she recommends.  So we went and the allergist ran a PFT (pulmonary function test)…he failed…moderate obstruction.  So she increased Parker’s inhalant steroid and sent us to the pulmonologist for consult.  At this point, we were seriously thinking this was just his asthma (please don’t take me wrong…asthma is serious too…but you have to remember we have been dealing with asthma his entire life and we have felt like we totally had that medical issue under control). 

We went to the pulmonologist last Monday…Michael was out of town on business…oh how I wish he would have been home, because I felt like our world had turned upside down just as we had started to roll along a good path.  This newest doctor was such a kind and gentle spirit and I am so incredibly thankful that he had the nurse take Parker out of the room while he first explained to me what his impressions were.  It helped me hold it together better when he later explained to Parker. 

During our visit, Parker did the same pulmonary test again…again obstruction…then they gave Parker a breathing treatment…the doc’s theory was if the test results got better after using the meds then we know it’s just his asthma…if not, then it’s more…  He repeated the regular PFT and once again…obstruction.  This led him to further tests…a more complex PFT.  The spirometer reading was not good…  it showed not only obstruction but also restriction and this means he likely has mixed lung disease. 

So you might be thinking, what in the world does this mean…because I certainly didn’t understand it.  I am still trying to understand it.  Apparently there is no part of the body that is immune to the attack of systemic JA!  When they say it can affect any organ…well, now we really know this.  I mean…yes, it has already attacked so much…but this one organ really hit me hard…The crazy thing is, we have been celebrating because Parker’s blood work has improved so much.  He also had decreased swelling (although we noticed things are starting to swell again…and hurt more…and he is having a few low-grade fevers with rashes), but he has better blood work.  This disease is simply the cruelest thing I have ever witnessed. It teases with your emotions…gives you a false sense of security.   Our understanding is that with mixed lung disease, Parker is having both asthma and interstitial lung disease.  The pulmonologist said that he is like 1% of kids dealing with pulmonary disease.  This explains why his chest has been hurting and burning.  It also explains why he has been sleeping a lot more again.

So, yes, our son’s body is attacking itself!  And we are obviously all concerned about this.  The docs are working together…they are checking his meds, trying to figure out to what extent damage has taken place; we have more tests in the near future; and we are all arming up in our battle gear to fight alongside this JA warrior and win with PURPLE Parker Power.  Parker is strong-willed and we are so very glad that he is because he is fighting for his life and we love him dearly.

From the Voices of CHILDREN with Juvenile Arthritis

Families with children who are journeying with Juvenile Arthritis are some of the strongest people we know.  Many of these amazing families shared with us what their children have to say about JA and gave us permission to post their words on our blog.  Thank you to each and every one of you for opening your heart so others may better understand what you go through.  Names have been removed to protect privacy. 

These children’s voices speak volumes…

·         Some days you ache really bad and some days you feel great.
·         Some kids have really bad arthritis all the time and we need to help them.
·         When you have arthritis, you get to go to a bunch of events that are only for kids who have it. You also get to meet a bunch of different doctors and nurses who are really nice. You can make different friends than you would make if you didn't have arthritis.
·         I like to go to the children's hospital, because I can have sushi for lunch.
·         I want more people to know that a lot of kids get it and it's not JUST arthritis. It is more serious than people think. Not that most people realize that kids get it.
·         The BEST thing about JIA is Camp Boggy Creek.
·         I really wish people could understand the amount of pain some kids suffer.
·         People seem to think that because we are children that our pain isn't as bad as it is.
·         The best part about JA is my JA Friends; they are like brothers and sisters who really "get" me.
·         It hurts and I feel yucky.
·         I gets a lollipop after my needle bag (infusion) and Santa comes to the hospital because I is special.
·         It is cool to go to Camp Boggy.
·         I want others to know that just because we have this disease, it doesn't make us WHO we are, it's just a part of us and something we deal with every day. Don't look at us differently or treat us differently because of this. We are people with our own personalities and we are fighters. We are in pain every day and we still get up, put a smile on our face and go and do things that "normal" kids do.
·         We can laugh, joke and have fun just like the rest of you so don't ignore us or make fun of us because you think we are different. Talk to us and be our friend and you might find that you just found the best friend you'll ever have...
·         And the Best thing about it.... As we get older and start accepting that we have this disease and gain a little more confidence, we find that we can do things we never thought possible, we meet people with the same disease or something similar and find that we aren't alone and eventually realize there is a purpose for us and when we find that purpose, you feel really good about yourself whether it is helping people, raising awareness or just making someone smile because you are smiling despite the pain and agony you are feeling.
·         I love going to her eye Dr. because I like to read the letters.
·         I hate shots; it’s the worst.
·         We talk about all the other kids who have arthritis and pray that they all feel better!!!
·         I miss school.
·         Sports hurt now.
·         JA kids are compassionate, sweet and caring!
·         Even though there is a smile on my face, I'm in a lot of pain.
·         It's hard when I can't keep up with my friends.
·         The best things about JA are new friends who also have JA at Camp Boggy.
·         You get to skip PE.
·         People shouldn't just think you can't do anything just because sometimes you are in pain, 'cause sometimes you are not.
·         You can go to fun places like Boggy Creek and if you are in your wheelchair you get to go to the front of the line at the parks. (Disney, Legoland, etc.)
·         I wish others knew the reality of JA and just how greatly it can impact the lives of those who battle it daily... Just getting up and out of bed can prove to be an arduous task.
·         And I think the best things about JA are derived from what we learn from coping with it... Tenacity and empathy are two of the most glorious gifts adversity can offer.
·         Arthritis took away my high jumps and fast running.
·         Shots on Thursday.
·         Cookie.  Juice. J
·         There is no magic cure, drink, or food that CURES this disease and even the medicines our doctors give us is not a cure it is a treatment.
·         The BEST thing about JA is how it has shaped and changed my life and myself. I would not be who I am today if not for my arthritis, and I like myself.
·         Arthritis is a disease that does not care what age you are... anyone from an infant to an elderly person can get this disease.
·         The best thing about having JA is going to conference and meeting other kids who also have this condition.

·         We have wonderful friends and are able to help newly diagnosed.
·         It is not just bad to your bones; it affects other organs and your heart.
·         JA can affect any age.
·         Sometimes when you have JA you can also have other autoimmune issues.
·         Kids get arthritis too!
·         I have met a lot of cool people.

 

JA Go Away...All Our Kids Want to Play

Living with Chronic Migraines (By Logan Lentini)

When most people hear the term “migraine” they just think of a simple headache; what they don't know is how much they can affect you. Living with chronic migraines is a constant struggle.  Now I'm not referring to those who can take a pill at the onset of the headache and it magically goes away, but rather the people like me who have to endure and attempt to overcome the pain after multiple medical treatments (pills, shots, infusions, and biofeedback). It is these people who are most affected by chronic migraines. Not only do they affect your ability to function, but they also affect your social life and you're disposition on just about everything. I personally was diagnosed with chronic migraine at the age of five years old.  I have been able to manage them fairly well up until the last few years. I am now sixteen years old and these migraines have been becoming harder and harder to manage.  We do not know why I am getting them, but we do know that they are limiting my life immensely.

Hypersensitivity, this word solely explains why functioning with a migraine is such an arduous task. By definition, hypersensitivity is described as being "abnormally or excessively sensitive, either psychologically or in physical response." Though it is difficult for a migraine to cause someone to be psychologically hypersensitive it is possible, and we will get back to this later on, as this concept of hypersensitivity is why migraines are so debilitating. It is this hypersensitive nature that makes every task difficult, due to the fact that every one of your five senses becomes about one thousand times stronger. Take reading for instance, this simple activity becomes harder not only because your eyes hurt to the point of even closing them isn't easy, but also because you need light to read and light can make your migraine even worse. And forget about trying to do something that involves noise because this noise will make your head begin pounding to the point where you can feel your pulse inside your head. On top of that smells can often make a headache worse, and laying your head down may be difficult as well due to the pressure being applied to your skull. Even eating can be unpleasant at times, just because the taste in combination with the smell and the chewing motion your jaw makes could easily elevate you pain.

This hypersensitivity can also dictate your social life. As previously stated, when one has a migraine normal tasks become extremely difficult and not worth doing. Taking this into consideration, you can understand how these migraines can control your social life, especially in my case where they can last months at a time. When I have migraines, the last thing I want is to be around people. I know this sounds bad, but think about it, what if they're wearing really strong perfume or cologne? What if they're excessively loud? Then my migraine will elevate, and potentially put me out of commission for even longer. In addition, social activity is generally in a well-lit setting, where there is noise anyway and various smells in the air, all things that make a headache worse. Due to this, I literally isolate myself in my bedroom where it is pitch black and dead silent. Here I can control all headache-inducing-factors, and potentially relieve my pain. Though this is unlikely under many circumstances, it is still possible.

Here is where the psychological hypersensitivity comes in play.  In my personal situation, where I have these chronic migraines for up to several months, my moral begins to fall. Now I'm generally an optimistic person, I have my bad days just like the rest of us, but I tend to have a very positive outlook. However after having to endure the pain that comes along with migraines for weeks at a time, I become pretty negative. The simplest problems that are easily fixed I might add, set me off. And after a while I just become apathetic; I don't even care anymore and just suffer, trying to accept that it may be a long time before I get to experience a headache free lifestyle. This was when I was at my lowest point though, like I previously said I am a very optimistic person.

The purpose for me writing this is not to ask for your pity, that's the last thing I want. I just want people to understand what I go through and to raise awareness for migraines being what they are, instead of their mislabeled definition as a really bad headache. Migraines are far more than this and that is what I want people to know.

Parker was asked, “What do you want to do when you grow up?”

 (Written by Parker Lentini)  

This essay was quite difficult to write, not because I couldn’t think of anything but because of the topic itself. This is a very sensitive topic for me because sometimes I don’t feel like I’m going to make it to my adult life. I mean sometimes I am in so much pain that I don’t know if my body can handle it anymore and no I’m not saying I’m going to take my own life. It’s just sometimes I feel like one day I’m going to wake up and not even be able to move or do anything.  So, I did my best to answer this question.  I hope you like it.

 “What do you want to do when you grow up?” …a question kids are often asked in life, but who knows what we actually want to do. I mean we still have years before deciding. For instance, I could be a firefighter, a baseball player, an actor, or even the president. But I guess if I had to choose now, I would probably say, “I want to be a Child Life Specialist.”

The main reason I would like to be a child life specialist is because they are the one person in the hospital that everybody likes. I know the first time I was admitted into the hospital I was sad and scared. Then this lady named Amy came into my room with a big smile and said, “Hi I’m Amy from child life is there any thing I can do for you.” Then my mom said to her, “He’s not doing good, sorry.” But she wanted to do anything to make me feel better; so she asked if she could come in. After we met, she asked if I wanted to play any games and from that moment on I knew I wanted to be a child life specialist. Like I said, every body likes them because they do whatever they can to make your hospital stay fun.

The other reason I would like to be a child life specialist is because of the kids. These poor kids have to spend weeks at a time in the hospital getting infusions, x-rays, MRI’s, surgeries, difficult treatments, and sometimes even missing holidays. And having had all this happen to me, I know how much a friend can help. I just love being around kids, and if I was a child life specialist I could be with them everyday. Since I have experienced what they are going through, I can relate to them and help them cope. So I would do it for the kids.

That is why I would like to be a child life specialist:  one, to be the “one liked person” in the hospital and two, to help the kids who need a friend and cheering up. You don’t have to be a firefighter or the president to help people. And you don’t have to be an actor or a baseball player to be cool. A child life specialist is all that and more. So thank you to all the child life specialists for helping others and helping me find out what I want to do when I grow up.

LOVE Pushes HOPE Higher and Higher



Waiting for Doc



For the last two and a half years we have made our 2.5 hour drive to the hospital every two weeks for treatment for Parker.  We are moving into 2013 with a much needed break from this schedule along with much hope for continued improvement.  Most of Parker’s treatment is at home now and we don’t have to go back to the hospital as frequent…we now go every 3 months.   In reflecting on this last year, a tremendous amount has happened.  With every hurtle we have continued with strength to take the leap of faith needed to get us to the place we need to be for our family.  Of course, Parker has been incredibly strong through all of this, but Logan has been just as strong, if not stronger.  As adults, Michael and I have tried to maintain day-to-day needs…but so has Logan. 



Logan



Logan's eyes get like this with the really bad migraines.



Logan has his own health issues with his relentless migraines this year.  This is a condition he has had since he was 5 years old and we have a very strong history of migraines in our family, but as Logan has entered his mid-teen years they have been more difficult to manage.   These migraines have not only impacted his health, but also his social life, education and stamina.  He continues to overcome and it is remarkable that he pushes forward while also supporting his brother and trying to create a balance in his life.  We are proud of the young man that he has become and his future has much promise and I am looking forward to the days to come.



Christmas 2012



We also want to celebrate Parker’s progress…this year pushed our hope higher and higher.  This year Parker has been on multiple biologic drugs to combat against juvenile arthritis.  I know that these drug names mean little to the general public (except maybe “Enbrel”) but bear with me as I process this…ready…he has been on actemra, then actemra with Enbrel and soon after he also began IVIG infusions (IVIG is a blood plasma to treat hypogammaglubulinemia and is not a biologic).  Then he took actemra with Enbrel and a round of remicaide, then he needed to stop all these (including IVIG) in order to proceed with the “study drug’s wash out process”.  During the wash-out of these previous biologics we had to up his steroids and begin the biologic kineret (twice a day) because he could take kineret up to 4 days prior to starting the RAPPORT study looking at the effects of the biologic rilanocept on systemic on-set juvenile arthritis.

Soon after starting the study, Parker’s health started to decline…yes, we are pretty darn certain he got the placebo and not the rilonacept.  Parker landed in the hospital in tremendous pain, swelling and pericardial effusion.  But looking back on all this, Parker has no regrets.  He knows he is playing a small role in impacting the future for children with JA.  Our family went into this last year knowing it was going to be a tough one.  We decided to put school to the side and be ok with hospital homebound while we worked on supporting Parker’s health.  We now feel like we are on the flip side…  What we have learned is that with each step forward…we are moving forward at a slow and steady pace…and although the journey may feel endless at times, we have felt tremendous forward propelling LOVE.



Surprise care package from Sloans via the infusion room nurses!



Thank you Ky for my special Parker Snowman!



This love has come from very unexpected places through very caring actions.  We know people lead busy lives with their own struggles and we are thankful for each and every person who has paused to show us love through your calls, emails, cards, text messages, and Facebook posts.  We are also incredibly appreciative for the actions people have taken…hugs, help with picking up Logan, meal prep/restaurant gift cards, doing laundry/cleaning, dropping by to say hi, leaving notes on the windshield, donations to the AF walk and High-5-Club, help to maintain work, comments on our blog, hospital visits, surprise packages, joining our walk team, helping fund raise, willingness to drive across the state to help us access an “out of stock” med, listening, encouraging, and validating our feelings.

We also want to thank the medical staff supporting Parker.  We know we are still on this journey…  Thank you for your passion in this field, your work is unbelievably difficult and we need more people like you in this world.  And I am not only referring to the doctors and nurses, but also all of the people behind the scenes who process the relentless amount of paperwork and insurance “overrides” because the insurance companies are not always open and willing to charter in untraveled territory.  Thank God that Parker was the first child in the state of Florida to get approval for the study drug once the study ended.  Multiple biologics failed him…this is the first drug that has had enough of an impact on him that we are witnessing some of the “old Parker” return.  When a devastating chronic illness impacts a family, you begin to try to create “new norms” and you work hard to find happiness in the little moments and pretend a bit that they are as wonderful, if not better than the happiness you experienced prior to the “disease” entering your life.  And in some ways they are…because they are felt with an increased intensity…emotional and physical pain does that to a person… But oh the JOY and renewed hope we feel with our “old Parker’s” return.  

Turning in wheelchair wheels for
skateboard wheels.

Logan and Parker are experiencing their brotherly passions again:  quirky fun, chitter chatter, planning events again, gaming together, and skateboarding…yes, skateboarding!  Logan spent his own money this Christmas to refurbish Parker’s board to make it safer for him.  He got him better wheels with a better center of gravity, bushings, bearing spacer, and stronger grip tape. 

Love is totally rolling this pair forward… and Michael and I love witnessing this…Here’s to continued happiness in the New Year.

Look Doc, I am working my stiff ankles!