our school letter

[Guest guest]

Hello; I thought I would post the letter I am giving to all of

leigh's teachers. It was hard to sit down and write this out.

As you know I did not write all that goes on just the highlights.

Nothing of the emotion and pain this has on the child and family. I

am also mailing it to the family (they all live out of state) that is

not too aware of this.

Debi

leigh(poly 12ish)

leigh was diagnosed in May 2004 with Juvenile Rheumatoid

Arthritis (Idiopathic/Polyarticular)). It started with an

unexplained wrist pain and inflammation. When the same symptoms

appeared in her big toe her physician ordered blood work and x-rays.

The diagnoses was JRA: she tested positive for rheumatoid factor (RF)

and antinuclear antibody (ANA). We were told to keep an eye on her

and life went on until July 2004. One Sunday afternoon about 2:00,

leigh started walking with a limp. By 8 p.m. she was unable to

move her hips. A trip to the rheumatologist led to a 4 day stay at

Children's Hospital. As time passed, her arthritis progressed. It

now encompasses both shoulders, both wrists, both hands, both hips,

both knees, both ankles, and both feet. Any number of joints can be

inflamed at a time - and sometimes all at once! Symptoms of JRA

include fatigue, joint swelling, stiffness, and/or pain. Most

symptoms of juvenile arthritis are due to inflammation as a result of

imbalances in the immune system. Not only do symptoms vary between

children, but they also vary day-to-day and even sometimes throughout

the same day. This is the reason why leigh sometimes comes home

half-way through a school day.

leigh is on some pretty strong medicines. She gets 3

intramuscular injections a week (Enbrel and Methotrexate) which we do

at home. The other medications she can take orally: Prednisone,

Gabapentin, Prevacid, folic acid, Mobic, Naproxen calcium, and iron.

These medications are not cures: they just to try to keep her from a

symptomatic flare up. There are times she is so affected that she

needs to go to the hospital for steroid IVs. She has had MRIs, x-

rays, and blood drawn almost each month just to make sure the

medications are not giving her negative side effects. So far her

medical team consists of Dr. Fox (pediatrician), Dr. Jarvis

(pediatric rheumatologist and research scientist), Dr. Puffenbarger

(pediatric orthopedist), and Dr. (pediatric

ophthalmologist). The Make A Wish Foundation has also contacted us

due to the severity of her disease.

Recently leigh has had several bouts of bursitis, tendonitis, and

anemia which is a direct result of her having arthritis. As you can

imagine, she has a very difficult case of rheumatoid arthritis --

which is a chronic disease. When she is not experiencing a flare up,

we pray that this good time is the start of a remission. We must

acknowledge that leigh may never outgrow this.

leigh has been very brave throughout this ordeal. She really

wants to be in school, and she wants to have an active lifestyle. At

times she can't make it through the day. When I pick her up early

from school, she comes home to sleep because she is fighting a flare

up, the medication has gotten to her, or she has a doctor's

appointment. There are times she doesn't even want to talk on the

phone with her friends. That is when I KNOW things are bad.