JIA and Dance

When you have a child, you have dreams.  Every parent does.  Your dreams, may or may not match your child's, as they grow, but to a certain extent, you help shape those dreams.

When my little girl was born, I hated pink.  I put her in yellow, purple and aqua, as frequently as possible.  AND...  pink.  Pink was her favorite color.  In many ways, I think that was my fault.

The day my little girl was born was traumatic, she was delivered via emergency c-section for a Placental Abruption.  When I saw her several hours after our failed Spinal, that resulted in general anesthesia.  When I held her for the first time...  I thought...  here is my dancer...  my future ballerina.  I could think only of pink ballet slippers.  Thus...  her never ending obsession with pink!

When she was 3 years old, she got her first pair of ballet slippers and tap shoes. Miss Brenda's Dance Studio  I remember how adorable she looked in them.  She was perfect!  She had the energy and stamina to keep up and make others smile and wonder where all that energy came from!

When she was 5, we moved and it took a year or so to find a new studio.  We did though.  Kennedy School of Dance.  She loves, and has since she started, her dance teachers.  They are fantastic!

She has loved both places.  Both, she has learned so much.  The last couple of years have been very interesting in regards to her dance.  As she has juggled  Anti-inflammatories, pain relievers,DMARDS, Biologicals, and Corticosteroids.  This May, she had her dance recital, along with Blue Angels tryouts. They are a wonderful dance team.  She has been part of the StraightUp dance team and truly enjoyed it.     These were (are) her dreams.  Dreams that SHE had (has)  until now.

This year was NOT her best year performing.  I (as her mom)  sat in the audience watching her and her younger sister perform all night.  So many beautiful dancers.  Routine after routine I watched her...  as the night progressed, she started limping off the stage.  My heart sank...  and broke for her, all at the same time.  This girl who had so much potential and hope at the beginning of the dance year, limping off the stage less than two weeks after joint injections in her knees.   She cried when she got home.  I cried with her.  She is hoping to dance again in the fall...  but at this point, I truly feel like her JIA is winning.  She keeps fighting.  She is one tough cookie.  She is my hero.  With her pain, I dont know that I could do what she does.  I pray every day for a cure.

Letter to Editor of Idaho Press Tribune

Long time no blog...  everything is pretty much the same and I really need to update, but as of today, I decided to write because of an article in our local newspaper the Idaho Press Tribune.  I decided to write a letter to the Editor.  Here is the letter, I hope no one finds it offensive.  It is not meant to be at all.

Have a great day...  A&J's Mom

Dear Editor,

I was happy and sad all at the same time when I opened the paper this morning.  I loved seeing an article on arthritis, since May is National Arthritis Awareness month, along with 15 other observances.  I was however disheartened to see it right next to a giant pink ribbon for breast cancer awareness, which is usually addressed in October.  It had some very helpful information though.

When I read the article written by Dr. Shevlin, I thought there were so many WONDERFUL aspects to it.  There was one area in particular that was missing.  Juvenile Idiopathic Arthritis (JIA).  There are currently 300,000 children in the United States, that have the autoimmune form of arthritis, that in adults is called RA (Rheumatoid Arthritis).  Very few people know that children can have arthritis, unless it affects their family in some way, whether it be a relative or a child of their own. 

Did you know that Idaho is one of 11 states that does NOT have a Pediatric Rheumatologist? There are 6 states, that are underserved.  We, here in Idaho, do have adult rheumatologist who will treat children, but the treatment is different and more aggressive for children than it is adults.

Did you know that the same drug to treat breast cancer is used in many patients with RA, and JIA.  This same medication is used to treat some forms of Leukemia.  The difference is that RA and JIA can go into remission, but it is always there, lurking, waiting to resurface.  Many of the medications used to treat kids with JIA, have black box warnings, and have not been approved to treat children, so parents have to choose,whether to treat, or not treat our children for this crippling disease.   Not only does it destroy the joints, but it causes, along with medication, organ failure and blindness.  When people think of achy joints, they don't think of the awfulness that is actually JIA.  It does kill, blind and cripple children every single year. 

There are currently less than 250 pediatric Rheumatologist nation wide, Which means that every single Pediatric Rheumatologist would have to see approximately 1,200 patients, every 3 months, there would be no room for emergency visit.  (see the following link from the Arthritis Foundation) 

http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/    (statistics)

http://www.arthritis.org/files/images/advocacy/Pediatric_Rheuma_Map_2_2013_1.pdf  (shortage of Rheumy's)

Here are the states with NO pediatric Rheumy's  along with the number of patients that need to be seen

Alaska- 800 Idaho- 1,500 Montana- 900 Wyoming- 500 North Dakota, 600

Nevada- 2,300 South Dakota- 800 Oklahoma- 3,500 West Virginia- 1,600

New Hampshire- 1,200 Maine- 1,100

As the numbers show there are approximately 15,000 pediatric patients NOT being served by a Pediatric Rheumatologist.    Now, lets look at the underserved, these are the states that have only one pediatric rheumatologist.

Vermont- 600 Arkansas- 2,700 Louisiana- 4,800 Mississippi- 3,100 Nebraska- 1,800

New Mexico- 2,000

With all of the previous information in mind, that more than 300,000 children have JIA, and there are only roughly 250 Pediatric Rheumatologists in the entire United States, that leaves approximately 30,000 patients being under served.  Keeping in mind that earlier, it was decided that a Pediatric Rheumatologist would have to see 1,200 patients,  by having zero pediatric rheumatologist, leaves nearly 15,000 patients without treatment or having to drive to other states for treatment.  In the six states that have only one Pediatric Rheumatologist, it leaves those doctors ALL six of them seeing 15,000 patients which is roughly 2,500 patients per doctor, not including children newly diagnosed.  This leaves the other 244 Pediatric Rheumatologist with roughly 270,000 and one doctor to see 1,100 patients still!

Please consider writing an article on this, or publish this information.  I am the mom of five, two of my children have JIA, we drive to Salt Lake City every four weeks to see our Pediatric Rheumatologist.  It is a 6 hour drive.  We go because of the lack of Pediatric Rheumatologist here in Idaho. They are only two of the 300,000 here in the USA, but they are mine.  Please help us and the other 300,000 children an families bring awareness to this debilitating disease.

Thank you so much for listening.

Sincerely, 

 

http://www.arthritis.org/files/images/advocacy/Pediatric_Rheuma_Map_2_2013_1.pdf  (number of kids per state with JIA)

My dancer

Every day my little girl can dance is a good day. 

A started dancing when she was 3.  She had a short cute bob, a sassy attitude and LOVED to shake her tutu!  She took two years off when we moved, because we couldn't find a studio, but when she started up again, she was reminded of how much she loved it!

This past three years with her arthritis, I have seen days when she could hardly walk.  Days when to watch her climb the stairs to the studio, I just wanted to go to her, pick her up and carry her back to the car.  There have been ankle and knee injections, but this girl, doesn"t care.  She asks again, for another round of steroid injections, because " I want to dance"  This past spring midway through competitions she said to me "Mommy I dont know If I can do this anymore.  I love dance, but my body hates me"  Every "dance mom has it in her head that at one point her daughter will be the Prima Ballerina, knowing full well in the back of her mind, that this is a very RARE thing, and well...  we can have dreams too right?

This evening as I watched her melt down once again, I felt those dreams shatter once again.  A little part of you dies, every time, a drug change happens.  A little part of you prays that the new drug, will be the cure, will take away the pain.  Tonight, she was searching for her leotard, overwhelmed with school, all of the make up work for when she misses, the new infusion of Actemra that will occur on Saturday and the lack of understanding in general of Arthritis.  A has very few days when she feel like it is all too much, but tonight is one of those for her.  She burst into tears, yelled at a couple of her siblings, and was tossing thing around her room.  As a parent these are the things you do NOT want to see your child do as a general rule.  When you have a great kiddo like A though...  moments like these are acceptable.  She obviously needed to apologize to her siblings.  Home should be a safe place to vent right?  Tonight, she said, "Im not sure if I wanna dance anymore"  my hear sinks...  This has been her love her whole life.  Yes, I taught her to love it by starting her so young...  She talks about being on the highschool dance team...  I dont know how much of a reality it is...  But what ever she chooses to do, I will back her 100% because that is what good mommy's and daddy's do.  You love and support your child no matter what is going on in their life.

Tonight when she gets home, we will snuggle for a bit...  away from any windows...  because what 13 1/2 year old wants to be seen snuggling their mom right?  Tomorrow, she may take a "mental health day"  to deal with the up coming stress of her first Actemra infusion, and she will be my sweet girl.  The girl who no matter what kind of pain she is in will, laugh, joke, listen to One Direction, tell her friends she hates her moms music, and belt it out in the car...  and be the amazing person i have blessed enough to be the mother to!

TB- Tuberculosis

So It has been a while since I have updated.  I forget to update...  :o)  We are just about to the three year mark on A's first flare!  It is sincerely amazing to me how quickly the time has gone!  We are also coming up on the two year mark for our son J.  It is crazy to think we have been on this journey so long already!

Well, since it has been a while, I will let you know what is new.

Back the End of November we had some standard labs run for meds on A & J.    One of the annual tests is a test for TB (Tuberculosis) You can have the skin test or the lab test, which is called a QuantiFERON-TB Gold.  It can be drawn at the same times as other labs.  This test is also done if you test positive when you are given the wheal.

We had the QFTB test done, because J needed to have some other labs drawn because of his Enbrel.  His test came back positive, so we had to have more testing done and meet with a TB doc.  His final diagnosis came back as Latent TB.  This basically means that although he tested positive, he isn't and never has been contagious.  He was just exposed to it at some point.   We originally thought he would be on an antibiotic for nine months, but now, it will be four because of the medication he is currently taking called Rifampin.  It requires that you take 120 doses to cure any TB virus in the body and when it is finished as long as you took the medicine correctly you have the same chance as anyone else of contracting TB.  Which here in the United States, is fairly uncommon (according to the doctor.)

We had to have the entire family tested for TB, just to make sure one of us wasn't the carrier.  All of us were negative.  I keep thinking...  well, at least we caught it early and it never went "active"   So even though it is a crazy cruddy thing to deal with, Im so thankful for modern medicine! :o)