newly diagnosed with Still's

January 24, 2006

My name is . My son, who is 16 was just diagnosed with Still's disease by

a process of elimination and ten days in two different hospitals. His initial

symptoms were severe lymph node enlargement in his neck, where he couldn't even

swallow his saliva. Doctors took tests for strep and mono. Both negative.

Then, within days, drenching night sweats began and his fevers would spike and

then sharply drop after the sweats. His liver and spleen were enlarged, WBC

32,000, elevated sed rate, elevated liver enzymes, but a positive ANR. While

being examined, the classic salmon colored rash appeared on his trunk and

quickly disappeared after fever broke. Was admitted into the hospital for

mono/viral hepatitis, of which he had neither!!! They sent us home and said he

was a " very sick kid " . Within two hours of getting home he had 104 fever and

sweats and was admitted to another hospital the next day. Was seen by

infectious disease, neurology, oncology, gastroenterology,

opthomology and rhematology. The clue to his diagnosis was his iritis which

was terrible. His whites of his eyes were completely bright red, something they

all said was " conjunctivitis " !!!! Was critically ill and treated with 1000mg

solumedrol iv for three days and was a new person. Two days after discharge he

developed the joint pain in his knees and ankles. He is now on 48mg of medrol

daily and seems to be doing really well. No joint pain, just a general feeling

of weakness and fatigue. I know the drugs are what are making him feel better,

but I want him off steroids soon and then do I worry about symptoms returning??

What should I expect? As an active 16 year old, with a great attitude, he

intends to " beat this thing " , yet I can't help but worry and be neurotic with

every symptom that shows up. Yesterday he complained of chest pain that went

away after two hours, and he is getting some slight tremors, but I wonder if it

is from the high dose of steroids. Can anyone

shed any light on any of this? Does anyone have a teenager going through this?

I'd appreciate any replys. Thanks.

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