First time here, as you might guess from the title.
Our 3yo daughter started complaining of pain in her knee 2 months ago, which seemed odd the time since we couldn't recollect any falls or similar. It was shortly after a gastro bug and also her younger sister being born, so initially we wrote it off as feeling a bit off and just wanting to be carried too.
Within a week she couldn't bear weight on that leg and we were in hospital getting checked out. Dismissed as likely transient synovitus of hip and told to come back if wasn't better few weeks. The next week was better so seemed a correct diagnosis at the time.
Another week or so passed and she's complaining of pain in her wrists, not picking things up well, general tiredness and limping again, so, back we go. Took 24 hours as in-patients until finally seen by a pediatrician who urgently order blood tests, x rays and ultrasound. We were then told it was possibly JIA, but the bloods would take some time to come back. Give ibuprofen 3 times daily.
The appointment was due to be 9th June. A few days before we moved house her neck started become stiff and very painful and limited In movement. The day before we moved, we were back in hospital, unwilling to wait until the 9th out even after the move.
IShe and I just missed our house move (which my wife had to handle without me or my daughter and whilst nursing the 3mo baby) as my daughter was referred to Bristol for a neck MRI under general anesthesia. My daughter was too upset at all the hospital visits, barely let herself be examined or even weighed. She refused liquid paracetamol, and is now refusing the naproxen we were sent home with.
We're waiting for a bed to be available, Monday, to admitted to Bristol children's hospital (an hour from home) to spend potentially a week there - at least until they can get enough specialists together to do a general anesthetic, MRI of her neck, more bloods... And a bone marrow biopsy.
We're terrified. I know the biopsy is to rule out leukemia since aggressive steroids would be disastrous if JIA diagnosis was wrong.
Worse, how on earth do I keep my daughter "ok" with this happening? It takes four people to pin her down for a blood test, a cannula isn't going to go down well. And how do we get her to keep taking the naproxen without spitting it out or a 3 hour battle of wills?
This is heartbreaking.