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Old Sep 14th, 2018, 07:47 AM   1
Mum (Mom)
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Join Date: Oct 2010
Location: Nottingham, UK
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Juvenile Idiopathic Arthritis

My 3 year old daughter has a working diagnosis of systemic onset JIA (we've got one more test result to come back before we get the diagnosis but the rheumatology consultant is pretty confident now). She's been really unwell with it, she was discharged Monday (10th sept) after 8 days in hospital, at one point they suspected leukaemia which was really scary.

So where do we go from here?

She's having a 3 day burst of IV steroids next week. Then she should be starting oral steroids with bursts of IV steroids every month or so. Then she'll need immunosuppressants. She can't have her pre school vaccinations. She's in pain a lot and has lots of temperatures. She can't walk very far and she can't run at all. Her hands, knees, feet and ankles are swollen. The consultant had to examine her under General anaesthetic, she counted over 50 swollen joints. The inflammation made her anaemic and she had to have a blood transfusion.

Mornings are bad. That's when she cries and can't walk. By mid morning she's back to her normal happy self.

My heart breaks for her. What do we do? How can we help her? She doesn't understand why she's in so much pain. Right now she's lying on the sofa with a warm wheatie bag on her knees.

Does anyone have any advice or tips to help? It seems so overwhelming right now (and at the same time I feel relieved that it's not leukaemia, to finally have help and finally feel like we're being listened to).

If anyone reads this and their child has arthritis, please PM me, I'd love to talk to other parents.

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