Samantha Marcum

 

I am writing this for my dauther, Samantha, she is 5 years old and recently diagnosed with Stills disease/JRA.  I can only tell her story from my view, but hope it may help any parents of newly diagnosed children. 
We had just bought a home in June 2000 and were at the new house doing some clean up before we moved in.  Samantha was laying in the floor we my husband and I noticed her scratching and a red rash on her legs and arms.  We went home that evening and thought it might just be the carpet or a pet that the previous owners had.  Well as you can probably guess, it did not go away.  It got worse.   She complained of groin pain at night and had to sleep with ice packs and itched all over.  I took her to her pediatrician, who thought she had a reaction to something.  We then went to a dermatologist, who had no idea what she had.  They thought maybe she was having an allergy reaction to something.  They prescibed Zyrtec for the itching.  It did not work.  We tried Atarax, which did help some.  The evening after we saw the dermatologist, Samantha started having a fever and complaining of her throat hurting.  We again were concerned of an allergic reaction so we took her to the local E.D. which has a Pediatric E.R. staffed by a Retired Pediatrician. 

We took one look at her and said, "you are going to think I am crazy, but I believe your daughter has something called J.R.A."  We had no idea what this was and asked, what is that?  He explained and wrote down some lab tests that he felt our pediatrician should order.  We went home feeling that we may be on to something.   The next day, July 6th 2000, we went back to the doctor and got the labs done.  Well, the RA factor was negative, but her sed rate was 46 (for a 5 year old this is TOO high) and her cell count was too high.  By then she was starting to complain of her ankle hurting and began limping.  Her doctor said that we needed to be seen by a specialist, a Rheumatologist.  I called around the area and found that no one would accept a patient under the age of 6.  We were left to travel to Gainesville, Florida to Shands Childrens
Hospital.  I called for an appointment, but was unable to get one for 30 days.   Samantha was running higher and higher fevers.  Sometimes 103.  I felt I could no longer wait for an appointment.  We put her in the car and drove to Gainesville to the E.R. at the Childrens Hospital.  She was immediately seen and the E.D. Doctor called from outside our room and contacted the head of the infectious disease dept. at the hospital.  They were there in the E.D. with the hour.  While there x-rays were done of her chest because of sounds they were hearing in her chest.  They also found that her limps were swollen in her neck and under her arm.  They also found that her liver was very inlarged.  She was in full rash and had a fever of 104.  Dr. John W. Sleasman, M.D. Professor of Pediatric Immunology and Infectious Diseases at the University of Florida admitted Samantha to the hospital for a series of tests. 

For 2 weeks they tested Samantha for everything from A to Z.  It was very hard as parents to see our little girl go through this horrible time.  Kids just don't understand needles, scans, and work-up and work-up.  Finally, after two weeks and 7 weeks after the onset of the rash, we had a diagnosis, JRA.   Just what the doctor at the local E.D. had originally told us. 

It's Oct. 1st now and Samantha has started Kindergarden.  She is taking Atarax for the itching (yes, she is still itching after almost 4 months!), Naproxen three times a day, Zantac (for her stomach), vitamins, and Methotrexate weekly.  She goes to the lab every 4 weeks to check her levels, which are still at 46.  But with her high sed rate in the hospital of 117, we are happy at the moment with 46.  Samantha has good and bad days.  She has her rash everyday! It itches every day.  She complains of paint in her wrists daily and ofter wakes up in the middle of the night hurting in her legs or arms.  She no longer has any fevers, but her pain really bothers me.  They are considering Enbrel for her, but I am not willing to put her at risk yet. People stop up and comment on her rash and ask what she has.  They question us at the grocery store if she has the mumps!  People just do not understand that kids can hear and have feeling too!   I signed on for Samantha in the hopes of learning through other peoples experiences.

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