3 Year Old. Worried & Confused.

AnRuaRi

Our 3¾ year old came down with something just before New Year.
The rest of the family had all had a tummy bug in the preceding week so we thought little of it.

he deteriorated over the next few days untill on the Friday he could not stand up. His ankles and knees were swollen and hot. His eyes were red. His skin was sallow. His fever was spiking every night until he was too hot to touch. He had eaten on just 1 day that entire week. (Thursday).
When I came home from work on Friday I insisted on calling for advice. the 111 service told us to take him straight to A & E.
The A&E Doctor hadn't a clue what was wrong, and he was admitted to the Peads ward.
The admitting doctor said it looked like Systemic Onset JIA, and found indicative rashes.
The next day the Consultant said he thought it didn't look like Rheumatoid Arthritis because he didn't have a Heart Murmur. It was probably a reaction to a virus or bacterial infection...
He had no fever at the time and his joints had calmed down considerably.
that night his fever spiked again, but to a lower peak.

He was discharged on the Sunday, and the discharge notes said 3 possible diagnoses:
JIA
Post Viral Reactive Arthritis
Post Strep. Reactive Arthritis.

no variant on JIA was identified. He is to see the consultant paediatrician next Tuesday... and has been seen by the opthamologist on the monday but his eyes had calmed down completely before that appointment.

I'm confused and worried. Post Streptococcal ReA is closely related to Rheumatic Fever, and that's a real worry. He was tested positive for a throat infection, but the swab was only taken on the sunday after he'd been playing all day with another child with Strep. Pneumonia who was in the next bed the whole time - so he definately came in contact with that bug in the hospital so we can't know if he had it already. (why didn't they take that swab on admission????)

In terms of JIA the Opthamologist had been told it was suspected Poly Articular JIA


What can we do to make sure we get the RIGHT diagnosis not just "A" diagnosis. Obviously we're worried about his long term prognosis... but we need a diagnosis before we can understand the prognosis.

After discharge from the hospital on Sunday, the arthritis migrated to his wrists and then to his Fingers, but has now calmed down. He's still stiff and sore, but with no visible inflammation or swelling. He's been on Antibiotics for almost week now to treat the throat infection (The GP called and told my wife to come in and pick up a prescription) but they didn't say whether it's Strep or something else.


How forceful should we be in asking for a referral to see a Rheumatologist?

Other than keeping a diary of his symptoms, is there anything else we should be doing?

stickywicket

Hello. I can 'feel' your concern in what you write and I can empathise as grandmother to a 4 yr old - and as someone who has had RA for over 50 years, starting with a 'query rheumatic fever' diagnosis at 11.

In terms of treatment, JIA would have to be confirmed and treated by a rheumatologist. As for the other, reactive forms of arthritis, the treatment can be the same but I think it would depend on how long it lasted. Any auto-immune form of arthritis can be very hard to pin down to a name so instant diagnoses are often just not possible. However, a rheumatologist is the person to do it, not a GP.

All I can say is that I think, if it were my grandson, I want him to see a rheumatologist or, at least, want to know why my GP thought that unnecessary. You could, in the meantime, take photos of any swelling or inflammation or even movies if he is walking awkwardly.

I do hope all goes well.

stickywicket

Sorry. An afterthought. This might help. http://www.arthritiscare.org.uk/AboutArthritis/Conditions/Reactivearthritis The link it contains is helpful too.

AnRuaRi

Thanks for the reply

Are there specific pointers we should be looking out for that may help to differentiate between Reactive Arthritis and JIA?

dreamdaisy

Hello, I am so sorry that you have had to find this website, sometimes life's cruelty knows no bounds. I cannot help any more than Sticky has but, in answer to your last question there is nothing we can tell you regarding indications and signs etc. because we are not doctors. We may be long-term practitioners in arthritis but that's the scope of our knowledge.

Keep a diary of your son's troubles, noting (maybe even measuring) any swelling, his temperature, his tiredness levels, his appetite, anything that will give the people you see a better all-round picture of what is happening with him. I know from my own experiences with me that I feel sure I will remember all I want to tell and ask my consultant and then, once in the room, I forget. :oops:

Please keep us informed about what happens, I don't have children but my heart always goes out to you parents and I am concerned. I wish you all very well. DD

stickywicket

DD is quite right. We're not docs and can't diagnose. You might have to be prepared for a longish wait before things become clearer. I hope not but it does sound as if, up to now, everyone has been on the ball. I do hope your little fellow makes a full recovery.

DaddyM

I saw this quote about diagnoses on facebook that may help (kind of):

"Extended oligo here, too. I did ask about this years ago as we had a diagnosis about the same time that they changed the terminology from pauciarticular to oligoarticular.
Diagnosis is specific to the first six months of presentation as mentioned by quite a few above, but in the end it's irrelevant as the treatment options are the same and, as the children are different, treatment paths change according to how successfully they respond."

There's much more activity on the facebook group that this Forum, so it's worth joining up:

https://www.facebook.com/groups/JAParentsFamiliesUK/

Lozzy

Hi, I know it's a late reply but the only thing that can say wether it's JIA or reactive arthritis is time. They need to have had the symptoms for 6 weeks or more before they will officially diagnose JIA.