systemic onset - kineret - 4 yr old daughter

July 10, 2010

Hi everyone, my daughter Ellie, 4 yrs old, was recently diagnosed with systemic

onset juvenile arthritis. Its been just about 2.5 months since her first

symptoms, an episode of severe stomach upset and fever, along with a swollen

knee that was drained. Within a couple days of the drain she started to have a

daily fever and rash which lasted for the first month.

Her first symptom was a swollen knee that got operated on, they drained it,

afterwhich she started on NSAIDS and 5 mg Prednisone. After the drain, upon

which they found nothing other than lots of clear fluid, we met a pediatric

rheumatologist. Initially her diagnosis was Oligarticular. But then other

joints started to swell and the fever and rash started, and then after a week or

two of that she went to 10 mg/week MTX. This regimen eventually subdued the

fever and rash, and brought her joint swelling to a point where she could walk

and do things but she was still in pretty tough shape. Her leg and hip needed

rehab for sure, she just spent too much time off of it.

4 days ago we started on Kineret. We saw an immediate difference in her. She

is moving much more freely and happier. We dread the daily shot but confident

that this dread will subside in time, as long as it keeps working for her. She

is becoming a brave little girl. She has always been Daddy's girl and this

whole experience has ripped my guts out and shown me how weak I am. There is no

doubt to me that men are the emotionally weaker sex. I am getting stronger, but

its tough to go through.

I am amazed at how strong some of you are. I find that right now even my best

moments are bitter-sweet. I know that we are lucky to have the medicine

pipeline that we have today. Some of you long timers I'm sure are very tuned

into that.

Please pray for us. I am praying for you all.

We have 3 children ages 4,4,2 and our fourth on the way in January. We love and

enjoy their childhoods so much, we could not have been a happier little family

before all of this. Any words of encouragement or positive inspirational

stories are greatly appreciated.

(Ellie, SOJIA, 4 yrs, onset 2.5 months)

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