Emily's JRA Story- Why I blog

When our nurse practitioner at our pediatrician's office first suggest that Emily may possibly have Juvenile Rheumatoid Arthritis, I wanted to read stories, I wanted to hear how other families dealt.  I wanted reassurance.  I had no idea where to turn, who to talk to, or what any of this may mean for her future.  It was very important for me to find anyone that could answer some of my questions, that I could follow up with- even if it just meant reading a blog.  This blog that I now write is exactly what I was looking for.

My middle child always presented us with many challenges.  We always knew that she wasn't trying to be "bad".  Even as an infant, she cried all of the time, & she only slept about 15 minutes at a time.  As she got older she was on the OCD side, & she developed very bad anxieties among other things.  Try as we might, we could not see any reason for this.  Eventually, she developed cysts on her hands, a limp, an elbow pain that would wake her up many nights.  We finally had enough evidence to believe that there was something medically wrong, but it took months of labwork, x-rays, pain, and difficulty moving to get a diagnosis.  Eventually we had it.  I was so thrilled when our pediatrician told us that it wasn't leukemia.  Now I wonder if that wouldn't have been easier?
The day was January 10, 2008 & my daughter had just turned 6 when she was diagnosed with Juvenile Rheumatoid Arthritis.  She is a bit of an anomaly.  Most children do not test positive for the Rheumatoid Factor in their blood.  Emily is RF+.  She has poly-arthritis, which is 5 or more joints involved.  Most poly children do not test positive for ANA, which stands for Anti Nuclear Antibody.  Emily not only tested positive, but on a very high titer.  When they test the ANA they look for a pattern in the sample,  dilute the sample then look at it again.  If they still see it they dilute more.  They repeat until they can't see the pattern anymore.  If the sample needs dilution many times the patient is considered "high titer".    Emily is high-titered speckled.  She is affected in almost every joint, and has flexion contractures  to prove it.  What is that, you ask?  When one has knee issues, one tries to change the way that they move to lessen the pain.  When one alters movement like that for an extended period of time the tendons & ligaments around the knees tighten up & start to shorten.  This can cause shortening of the legs, which can in turn cause degeneration of the hips.  It can also cause the arches in the feet to go flat.  Emily has all of that going on, plus she had lost most of the curve in her spine from neck pain.  (Her curve is coming back now with the help of physical therapy!)  Obviously, this didn't happen overnight.  Had we any idea what was happening sooner, if we knew what to look for, what to do, she may now be under better control.
Childhood arthritis is the #1 cause of childhood disability.  Yet, how many people have heard of it?  Precious few, I'd say.  People don't realize that these children are on some very powerful adult drugs.  And without those very powerful drugs my child would be wheelchair bound. Of that I have no doubt.  She also has Scleroderma, a tightening of the skin that can restrict movement in affected areas,  Raynaud's Phenomenon, and Mixed Connective Tissue Disorder (overlap syndrome).  Raynaud's causes the blood vessels to over-react whenever even slightly chilled, and can actually cause frostbite.  Quite literally my child can be in an air conditioned room at around 75F and start to change colors.  Her hands, her feet, her tongue will start to turn white (blood stops flowing), then bluish/ purple, then red as the blood rushes back in.  Well, I haven't seen her tongue purple or red, but I have seen that white.  That really freaked me out.  The hands and feet change often if we're not careful.  She needs to wear socks at all times, and at least one undershirt.  In the winter she needs two.  We keep mittens close by year- round.  She was also just diagnosed with something called Juvenile Dermatomyositis.  With this, the first clinically recognized sign was red eyelids.  Her eyes were so red that it almost looked like she was wearing makeup.  She had a fever for the majority of a week, spiking mostly at night.  JDMS is a disease of muscle weakness and inflammation.  Her doc kept saying she had all of this edema in her hands, arms, legs.  He said that with this disease, without treatment it would be hard to brush her hair or even walk.  He was very concerned about her walking down stairs by herself.  All of this and she's only 8 years old.
As a parent, it is my job to advocate for her, to help and protect her, and to help her to figure out how to do things on her own.  (Or leave her alone to figure things out for herself... NOT so easy!)  One day she will be older, and she will have people that don't understand all around her.  She will hear things like "You don't look sick/ disabled/ in pain".  Or "You're just a wimp."  Maybe... just maybe by speaking up and out, by talking openly and trying to educate everyone that I see... maybe I will save her a little bit of pain in the future.  A little heartache.  Maybe by speaking out now, more people will donate to the Arthritis Foundation.  They are supporting the C.A.R.R.A. group.  CARRA is a research group dedicated to pediatric rheuamatological illnesses.  They are in charge of creating a registry for JA patients.  There currently isn't one.  That means that there is no standard of care for these kids, no real idea of long term side effects from the meds that they are on, or real research on what works best to help them.  The AF sent us to the Juvenile Arthritis Conference in Philadelphia, & they have sent her to Arthritis Camp two years in a row.  The conference is important to learn about things like research breakthroughs, upcoming medications & other health advances, as well as to connect with other parents and pediatric rheumatologists.  Camp is important because for a very special 5 days she can be herself.  She can go and be like everyone else while having nurses and doctors on staff to give her injections and monitor her when needed.  I cannot begin to explain to you how amazing it is to see your child that is always in pain just plain happy.  Her camp has been described as heaven for JA kids.  I want to raise awareness, and be her biggest advocate.  It is also my goal in life to help others that are going through this!  Please ask any JRA related questions that you may have at any time.  I want to answer anything that I can!!! If I don't have the answer I can find out!