Amanda
(currently age 10)

From Her mother Laurie:

On June 5, 2001 I took her to the walk in clinic at our local hospital for what I thought was an ear infection/brochitis. She was running a temp of approximately 101 and complaining of feeling "icky" and said that it hurt to
move. She also had a hivelike rash on her upper thigh.

The doctor's office did not think that she had an ear infection however they
believed that she might have an upper respitory infection and prescribed
antibiotics. She took sulfer antibiotics due to the fact that she is allergic to penicillian.

One June 8, 2001 the rash had spread across her stomach and she was having more problems with the swelling of her joints.  At this point she was having trouble walking and her hands had swelled noticably. Additionally she was spiking fevers of approximatly 102-103 twice a day.  I was told that it was
a reaction to the antibiotic and to take her off it.  I was also told that Benadryl would be the best thing to give her.

On June 11, 2001 she was not improved at all and we returned to the doctor's office.  They said again that she was suffering from a reaction to the antibiotics.  I told them that the rash was there BEFORE the medications but
was told that I "must have remembered it wrong"

On June 16, 2001 she returned to the doctor's office.  At this time her knees and ankle joints had swollen to the point that she was unable to walk. She could not hold a cup in her hands. Her fever was now consistently
spiking at 103 twice a day.

On June 19, 2001 she began to have trouble breathing and I rushed her to the
hospital.  Five separate physicians examined her and it was decided to admit her to the hospital for safety sake.  At the time of admission her white blood cell count was 2100 (I was told that normal was 700-800)

For the next several days she was examined by more than 9 physicians and specialists. She was given a CAT scan.  She was tested for leukemia. Her blood was drawn every 3 hours.  Her temperature at this time was spiking
between 104-105 twice a day.

Due to the diligence of a wonderful physician (who was not her doctor at the time) we discovered that she showed many of the symptoms of Stills Disease. He spent many hours researching this disease and finally came up with a course of action that has served her quite well.

She takes Naproxen 250m every day. When she has a flare up she ups her dosage to approximately 1250m a day.  We have discovered that most viralinfections will cause a re-occurance within two to three days after exposure therefore I am very cautious about anyone who may be sick.

More doctors need to be aware of this disease.  She was mis-diagnosed for 21
days before anyone realized what we were dealing with.  I hope that this web
site helps get the word out there that this needs to be dealt with.

I would also like to know if anyone could please forward me some information
regarding the long term effects of Stills patients.  She continually asks what is ahead for her and I would like to be able to give her a better answer than "Well, we'll find out when we get to then won't we"