What do YOU think of when you hear the word “ARTHRITIS”?

When I was younger, if I didn’t know the meaning of a word, my mom would say “look it up”…well, I decided to look up “arthritis” for the fun of it…

Merriam-Webster dictionary defines arthritis as: “inflammation of joints due to infectious, metabolic, or constitutional causes; also: a specific arthritic condition (as gouty arthritis or psoriatic arthritis)”

Let’s dive in a little deeper… Most of us hear the word arthritis and think of the form called “osteoarthritis” and yet we use the word “arthritis” as if it is interchangeable with the word “osteoarthritis”.   We all know someone, usually an older person, who has arthritis…in fact, it is so “accepted” as the norm that many elders will say something like “oh, it’s just my arthritis acting up” if you ask why they are moving with caution in some way.  Our culture/society expects this because it’s only natural as one ages.  But why do we accept pain as acceptable…it’s not something anyone should have to experience.

Merriam-Webster dictionary defines Osteoarthrtits (OA) as:  “arthritis typically with onset during middle or old age that is characterized by degenerative and sometimes hypertrophic changes in the bone and cartilage of one or more joints and a progressive wearing down of apposing joint surfaces with consequent distortion of joint position and is marked symptomatically especially by pain, swelling, and stiffness—abbreviation OA; called also degenerative arthritis, degenerative joint disease, hypertrophic arthritis”

OA is NOT what children with juvenile arthritis have!  Juvenile arthritis is a form of rheumatoid arthritis and more specifically is differentiated from OA because it’s an autoimmune arthritis.  Juvenile arthritis is not NATURAL in any of its various forms.  Yet, many families experiencing JA have heard at one point or another, something to the effect of “Oh, I know about that (referring to JA), I get arthritis in my …” or “My grandma has arthritis…” or  “I had tennis elbow and that really hurts…”  All of these comments are very well-intended.  They are a way of showing compassion or an attempt to relate to a disease that many know very little about.  But as a parent or a child/teen dealing with the disease, these comments are incredibly frustrating to hear spoken aloud because we painfully know that osteoarthritis is not synonymous with Juvenile arthritis in any way shape or form; except that they share one commonality in that the diseases both affect joints.  Juvenile arthritis (also known as juvenile idiopathic arthritis and juvenile rheumatoid arthritis) is an autoimmune disease.

Merriam-Webster defines rheumatoid arthritis as:  “a usually chronic disease that is considered an autoimmune disease and is characterized especially by pain, stiffness, inflammation, swelling, and sometimes destruction of joints—abbreviation RA; called also atrophic arthritis”

and autoimmune is:  “of, relating to, or caused by antibodies or T cells that attack molecules, cells, or tissues of the organism producing them”

and atrophy (verb: atrophic) is:  “decrease in size or wasting away of a body part or tissue; also : arrested development or loss of a part or organ incidental to the normal development or life of an animal or plant”

Juvenile arthritis (JA) comes in many forms and severities range from one end of the spectrum to the other.  Just as the various 100 plus forms of JA differ, so does the treatment.  Researchers are still learning about JA; there is still so much that is unknown.  And even if one treatment plan works for one child with the very same form of JA as another, it doesn’t guarantee it will work for every child with that form.  Each child is an individual.  Thus the challenge for pediatric rheumatologists is great.

I know that families who read our blog, especially whose child is newly diagnosed, may worry even more after reading about Parker.  But I want to reassure families to remember that just because something doesn’t work (or does work) for our child, doesn’t mean the same will happen if the treatment is used for their child.  I have heard that some families get really scared after reading about Parker.  We never intended to scare anyone, but we do ALL desperately need a cure for our children no matter where we are at in this JA journey.  Parker does have a severe and progressive form of JA called systemic on-set juvenile arthritis (also known as still’s disease).  Recently, we have learned that even with systemic on-set there are some who have less than 5 joints involved (oligo) and some who have more than 5 joints involved (poly) and that it’s children who are poly in nature that seem to have a more progressive form of the disease and that children with systemic on-set seem to have more immunology issues. For readers who are not familiar with systemic on-set JA, these children not only have joint involvement but also can have issues with rashes, fevers, and inflammation in any organ in the entire body   (source:  http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html).  

Our family has chosen to be vocal about our experiences because we feel it is one way we can raise awareness and advocate for what is needed for ALL CHILDREN with autoimmune diseases.  They ALL deserve equal attention and we really feel that if researchers could figure out one autoimmune disease, it would help with making progress on all autoimmune diseases.



Michael, Logan, Parker, and Jesse (Logan's best bud) watch the sunset



So tonight the rain clouds drifted away as we watch the sunset on another glorious day.  We send out love to all families dealing with Juvenile Arthritis in any size, shape, or form.  May we all see a CURE become reality for our future children!

Living While …..Waiting….Always Waiting

This school year has been one of much optimism, but our optimism has been shaped into “realism”.  We have pushed hard to keep Parker IN his middle school because with every new drug (and there have been many) we held on to hope that “any day now, things will get better”… and in moments of time, some things get better, as if to tease us of the possibilities.  Parker becomes so hopeful, rejuvenated, and motivated with every glimmer of hope for better days.  And let’s be totally honest, when it then doesn’t work, the entire family is deflated once again.  It is very difficult to explain this phenomena that keeps happening over and over. 

When we started this journey over 4 years ago, we just wanted an “answer” because we really felt that an answer would lead us to solutions.  And we felt like we would be better able to not only support Parker’s medical needs but also his educational needs.  Well, for 2.5 years we have known what Parker “has”…We STILL don’t know how to best support his educational needs and I feel like so much rides on the RAPPORT study that he is current on.

This disease is so complex.  It’s difficult to comprehend what could happen, while at the same time pushing to maintain optimism, motivation, and faith that it will get better.  We don’t make “promises” anymore around drugs…we don’t make plans without a back-up plan and we write in pencil on our calendar…we don’t expect huge gains….BUT we do continue to hope the cure will come; we do continue to make plans and hope we can follow through and that others will understand when we can’t; and we do push for tiny gains and celebrate successes because the small bits of progress are huge for Parker!

Parker has a huge powerful energy about him.  We really believe that his strength is unimaginable for some to even begin to comprehend.  And he is a great illusionist… he is engaging and smart and puts forth so much love …and he fools people in thinking he is ok “when he looks so good”.  And we are extremely proud of him because he does rise; he does push on; and yet he has had to learn to accept that his body does not cooperate with what he would like it to do…at least not yet…

I say all this because we want people to learn and to really understand…but I am beginning to believe that it is impossible to totally understand systemic on-set juvenile arthritis…shoot…doctors are still trying to “understand” it.  Here is what we do understand…without proper treatment, systemic JA:

·         causes incredible relentless fatigue

·         produces intense pain

·         causes oligo or polyarticular arthritis:  joint swelling is in every joint for our son with heat and redness (Parker has poly)

·         induces fevers

·         brings on rashes

·         causes pleurisy (swelling of the lung lining)

·         irritates the lining of the stomach and causes gastritis (swelling of the stomach lining)

·         causes pericardial effusion (swelling of the heart lining)

·         enlarges the lymph nodes (we learned there are even lymph nodes near the stomach)

·         causes erosion and joint narrowing

·         results in osteopenia

·         causes anemia

·         causes immune issues

·         stunts growth

·         causes thrombocytosis (increased blood platelets)

·         causes hyogammaglobulinaemia (decrease amount of immunoglobulins in the blood and can cause higher susceptibility to getting infections)

·         causes fibrinogen levels to be off (this can affect coagulation of blood)

How do we know this?  Because we have to know this… Parker has experienced all of this and more…because he also has overlap syndrome of:

·         vasculitis

·         raynaud’s (cold hands and feet that turn purple, red, and white)

·         myositis (weak muscles)

·         psoriatic features

We also know that sJA can cause issues with pretty much any organ in the entire body and many have issues with an enlarged spleen (our son does not have this…wahoo).  And in two thirds of the deaths that happen in children with JIA, they are with children who have systemic JIA (source:  http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html)

Parker is living…living and fighting this damn disease that is trying to over-take him, but he is fighting hard to stop it.  Parker’s voice was heard when he said he wanted to do the RAPPORT study.  At first, my husband and I were not going to do it because we had some issues with our insurance, but after Parker’s last hospital stay, he is the one who re-initiated the discussion around the study.  At this point, Parker was on 3 biologics (actemra, Enbrel, with a dose of remicade), along with IVIG infusions.  Not to mention the multitude of other drugs to control this disease (pain meds, anti-inflammatory meds, meds for meds, chemo, steroids, blah blah blah).  And the steroids are possibly his saving grace right now…because the “study drug” is not working (or he is on placebo).  One of our main goals has been to get him off steroids…he has been on them for 2.5 years…way longer than we ever expected. 

So with regards to school, Parker has been in hospital homebound because he barely made it to school first semester.  Oh, and first semester he was only on a part time school status with 2 classes on-line.  It took him all school year to complete the first semester of both of those on-line classes and he only has one test and his exam left.  As of today, he completed all of his hospital homebound exams and he is officially done with second semester of 7^th grade.  All year, he has been playing major catch up with school.  We feel like next school year totally rides on this study and if it works.  Needless to say, we have re-initiated hospital homebound for next year just in case.  Like I said, we are becoming “realists”...yes, me, who fought to keep him in school is realizing…but we must concentrate on helping him feel better because we don’t even want to think of what “could happen”…

So we are living…coping….comforting Parker…and constantly praying…and here we are again, waiting…waiting for 5 weeks to pass since stopping biologics and being ensured he will get the study drug…in two more days we know for certain Parker will get the real trial drug.  We are unsure if he has been getting placebo, or as Parker says “if this is the real drug, it sucks”.   Need I say more…

Parker Shares What JA is Like

March 16, 2011

So I am writing today to try let people understand what arthritis is like. Now just let me tell you it is not fun; it is painful.

For example, look at this picture...

Pain-zilla!





To see the vessels and the pain in my back angle the screen.



Also for optimal view, angle the screen.

Now for those doctors that say, it was all in my head; look at this. Bet you don’t think it’s in my head now.

I also have to go through a lot of tests along with the pain.

For example, look at this.

Not fun.

And for all my friends who say I’m lucky because I don’t have to do all the homework and school work. Well their wrong. I have to do all the work they do but while I’m in pain.

 

"Arthur Itis" Leads Us Down a New Path...

Here we are, one month later, and we are taking several twists and turns along our journey with “Arthur Itis”.  Saturday, our path took us to Orlando to our first JA Family Connect event.  We had such a wonderful time with our newfound JA Family and met wonderful people who all shared our acquaintance with Mr. Arthur Itis. 

Logan had so much fun playing with all the itty bitty kids (he is definitely his mom’s kid…loves those toddlers and preschoolers)!  He even got to meet some siblings going through the same experience as him.  Most of them were girls, but he was just fine with that :O).



Parker Gets His Certificate



Parker was such a trooper.  He played for a bit and even won a contest and was thrilled when he won a Colby video cam (much like the Flip Cam).  He was also so touched when he received a certificate for his hard work with the Jingle Bell Run/Walk and for being the number one fund raiser for Tampa and number four in the state.  To see his pride when he received that was a priceless moment.

Parker said that this was one of the best days of his life.  He felt like he could be himself and that it didn’t matter to the other kids that he had to stop playing and sit.  One other very special little girl, Emily, sat and talked and talked to him.  They were totally engaged for quite some time as they shared their experiences around their symptoms, many medical tests, medications, treatments, and feelings.  He hasn’t stopped talking about her since we got home!  Actually, he has been talking about all the kids, but Emily definitely had a huge impact on him.  At bedtime, he included each kid he met in his prayers for healing tonight.



Swallow Test



The timing of the family picnic was perfection for our family because on Friday our journey took a very sharp and scary turn for the worse.  Parker spent the day at Shand’s Hospital doing some tests and getting his infusion treatment and meds.  His doctor spent a considerable amount of time with us, was very compassionate and thoughtful.  But nothing could have prepared me for the news she shared with Parker and I.  I had thought we had already passed this road, but she voiced our biggest fear…Parker has systemic JA, also known as Still’s Disease, http://www.medicinenet.com/stills_disease/article.htm.  And as if that wasn’t enough to hear, but she is concerned he could also have a very rare autoimmune illness called juvenile dermatomyositis (JDM), http://www.curejm.com/.  That was quite a moment…I literally had to catch my breath as I fought back my tears for my son’s sake.  She then went on to explain that she is very concerned about Parker and that we have to stop the progression of the JA.  He is failing all the TNF biologic drugs and so we are to only wait one week and if he is the same or worse she is going to change his infusion treatment.  In the meantime, she is setting up an MRI to look at how his muscles and myelin are behaving.  And this may confirm if he also has JDM.  So now we wait for the insurance to approve.  We are getting very good at “waiting”.  So, when we were at the picnic, I was asked to introduce our family and the kind of JA that Parker has…and for a moment I didn’t know if I could say the words aloud:  “He has systemic JA.”  It now feels all too real.

After a long day of tests and infusions we journey home.

Life can change in a moment… Our hugs and prayers go out to one very dear little friend with systemic JA who was happily riding her scooter and giggling with all the little girls yesterday; and today she was admitted into the hospital.  Love your children dearly and tell them you love them.

Where to Start and Where are We Going?

As I sit to write this very first blog, I wonder how to start putting our "journey" into text.  And I wonder if putting our experience in print will somehow make this experience even more real...too real.  It's been 2 long years, yet it seems like yesterday I watched Parker play and excel at every sport he tried.  He would literally run circles around his older brother...we use to tell him to slow down...but today,  I am pushing him in a wheelchair just so that he is not left out of fun and can participate in his community. 

Two years ago, Parker got very sick and spiked high fevers that lasted months and months.  He had weird rashes and reynaud's.  We knew he wasn't having an allergic reaction because he has also had severe allergies and asthma since he was 18 months old.  These rashes were different than hives and they would disappear as quickly as they came and would come and go.  He also complained constantly of pain in his neck, back, hips, and legs in those first few months.  His lymph glands were very swollen.  His primary doctor began running tests and referring us to his regular allergist, an immunologist/allergist, and a neurologist.  He had tons of blood labs, CT scans, MRI's, bone density scans, x-rays, brain scans, GI and bowel scans...and at first the only thing that would come up as positive was sogren's syndrome and a few other levels were off.  The primary doc suspected juvenile arthritis but the expert immunologist/allergist said no because Parker's intelligence was so incredibly high (WHAT?!)...and he diagnosed him with fibromyalgia and we started PT and continued seeing the neurologist.

The primary doctor continued to monitor him and express her concern and at one point (called us on Christmas Eve) to tell us that he might present with lymphoma and that it often doesn't show up in blood until years after it progresses.  So she has continued to measure his lymph nodes throughout these last 2 years and every time she takes out that measuring tape my heart jumps a beat.

The neurologist couldn't seem to figure out what was going on...then Parker started seeing spots and headaches were getting worse and the neurologist talked privately to my husband and I to tell us that this was all psychological and that I (mom) was likely making it worse for him.  This was a very difficult time as we realized that he was sharing these thoughts with Parker's primary and she also talked to me about psychological help for Parker and myself.  Yet, as my husband and I talked through what was happening we realized he was not catching something...Parker's teachers and school nurse even were sharing physical symptoms that they were very concerned about...paleness, extreme fatigue, difficulty walking, falling, fevers, rashes...and yet he had "good moments/days".  I think that this confused matters. Then we realized that the med that the neurologist put him on had side effects of head aches and "seeing spots"...duh?!

About a year and a half into tests and multiple specialists, we switched to the partner of the immunologist/allergist because he also had a office near our home and he specialized in immunology/rheumatology.  After 2 visits, Parker got the firm diagnosis of Juvenile Arthritis.  So we came full circle.  I called my husband immediately and then called the primary to tell her she was right all along.  It was quite a moment for us...it was not psychological and we thought...oh, this isn't that bad...it's arthritis...we can deal with that...well, we had no idea where our journey was going to take us!

We are now seeing an amazing doctor at Shands Hospital (about 2.5 hours from home), but totally worth the drive.  We have been with her for about 4 months now.  It's been a very intense four months as we have tried to decrease Parker's steroids (on them 8 months now) and add medications that are suppose to slow the progression of rheumatoid arthritis (we are told it's not curable...but kids can go into remission).  For the past 3.5 months we have been giving Parker 2 shots each Friday night.  A biologic drug (enbrel) and a chemo shot (methotrexate).  No luck!  So a few weeks ago Parker went to the hospital for an infusion of sulumedral (1,000 mg)...to get him over the hump.  It worked for 3 marvelous days.  Parker was his old self for a moment in time.  He then got worse...much worse...pain and swelling has been horrible and steroids were once again increased. Parker has pain in every joint...even the little ones in the ribs and jaw and toes... Then we got the call!  Parker's JA is progressing.  The enbrel is not strong enough.  This week we start remicade infusions.  My husband and I had to make the hard decision to put him on this as there are little options...see this medication can increase chances of lymphoma 20%...but if we don't treat the JA he could have permanent joint damage and lots of pain.  So, we will be going to Shands this week for his first infusion and it could take 3.5-6 hours since they need to monitor him closely and check vitals every 15 min.  So I wonder where this new medication will take us...

I wish that more people knew more about how much Juvenile Arthritis impacts a child.  It's not just for "old people"...It doesn't just affect their joints...it affect their internal organs, their developing little social selves, school, their former sense-of-self, and the pain...oh the pain...how do they do it?!  We are very very proud of Parker.  And we can't even begin to talk about how amazing Logan is with supporting his little brother!  The night before our first visit to Shand's Hospital he sat at Parker's bedside singing Bob Marley..."Don't worry, about a thing, every little thing is gonna be alright..."    We're gonna be alright.