Brenna's Story

Brenna's Story:

In April 2013 Brenna limped off the school bus with a swollen knee. We figured it would get better quickly with lots of TLC and a little Advil. A visit to the clinic said to give it two weeks. In Mid May 2013, the knee was still so stiff and swollen we had to carry Brenna as it was too painful for her to walk. Another visit to the clinic, and an MRI found excessive fluid on her knee. In June 2013 Brenna had an aspiration of the knee and the fluid was sent for biopsy. The suspect was Juvenile Rheumatoid Arthritis, or JRA. In July 2013 we met with a pediatric rheumatologist at the Mayo Clinic where her diagnosis of JRA was confirmed; specifically, polyarticular JRA, meaning arthritis in at least four different joints. Brenna has inflammation in her toes, ankles, knees, hips, wrists, and fingers. We also learned she has Uveitis, an inflammation of the cornea. Since the diagnosis, we have battled painful flares and stiffness in our 6 year old daughter, plus almost monthly 800 mile round trip treks to the Mayo Clinic in an effort to find a medication that can stabilize her symptoms. JRA impacts Brenna’s mobility. At times it makes movement painful. Sometimes we have to carry her. It causes her to miss school quite often. It even makes simple tasks like writing very difficult.

Wednesday, September 17, 2014

A tough start to the school year...

Juvenile Rheumatoid Arthritis is one of those diseases where it just seems you never know what's next or when a flare up may happen.  Sometimes a flare up will hit and disguise itself.  That happened to Brenna a few days ago.

School started here a few days ago and, like most families, we were busy getting the kids ready for their first day.  We had been to open house and Brenna met her new teacher.  Of course, "new" didn't mean Brenna had not previously known her teacher.  Several of Brenna's older siblings have had the same teacher and Brenna has known her personally for years.

All the same the first day of school came and Brenna, uncharacteristically, appeared"nervous" and had an upset stomach.  She vomited several times from what we thought was anxiety so we kept her home to rest.  She proceeded to have an upset stomach most of the day and went to bed early. The next morning she woke up and the upset stomach was gone, however, it was replaced by a rash and severely swollen joints.  Toes?  Check.  Ankles?  Check.  Knees?  Check.  Hips?  Check.  Fingers?  Check.  Even Elbows.  And, they were all hot to the touch.  She added, "Daddy, they feel all hot inside."

It seems she started to flare but it presented in a new way so we didn't notice.  By the next morning it was obvious.  We took her to urgent care where they found she had some sort of infection which seems to have made her joints act up.  Her temperature was normal, but every joint and surrounding area was swollen, red, and sore.  Even the pads of her feet.  She didn't want to move.  It was heart breaking to watch.  Two days into the school year, she had not been there yet.

Back to the doctor visit.  Of course, to diagnose the infection she had to draw blood.  Most 6 year olds are scared of needles and Brenna is no exception.  Scared to death would be an understatement.  We were lucky because instead of using a needle, the lab tech only had to do a finger prick.  That is, instead of 2 nurses, Jodi, and I pinning her down for a blood draw, it only took Jodi and I to restrain her for a finger prick. By restrain, I mean bear hug her on my lap while we held her arms and legs in place so she wouldn't frantically kick or flail her way out of the room.  Sadly for Brenna, blood draws are quite common for JRA patients.  We go through this every time she has lab work.  Its the only way to check inflammatory markers, etc. This sweet little 6 year old girl gets to have a panic attack, shriek at the top of her lungs in mortal fear, and wonder why her family members have to hold her down for all this.  It makes me tear up thinking about it, and for those of you wondering, I am typing this with tearful and dripping eyes.

Seriously, friends, this awful disease, JRA, affects 300,000 kids in the USA only and all forms of arthritis affect of 50 million (yes, MILLION) Americans!  We have to end this!  No one, let alone kids, should need to go through this!  Please do what you can to help end this disease's reign on terror in our kids.  Learn more about it at Kids Get Arthritis, Too! and please, donate to Brenna's Jingle Bell Team where all the money raised goes to find a cure to Arthritis.  Please donate or join Brenna's team here!

We left the clinic with a very sullen 6 year old.  The bright spot came trying to cheer her up.  Nurse Deb gave her a stuffed bear with a band aid on it-  just like she had on her finger.  Thank you, Deb!  You stopped her tears.

"Do you want some ice cream?"  we asked her.  Thank you, Dairy Queen, for having the Double Fudge Cookie Dough Blizzard on your menu.  It brought a smile back to her face.
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