Juvenile rhuematoid arthritis

[drcrab]

Hi
Does anyone have any experience of this or are their any specialists out there who can help?

My ds4 has had 6 weeks of spiking fever, accompanied by a rash, comes and goes and has some joint pain sometimes. He's otherwise v healthy (between 50-75 percentile in height, weight), goes to nursery, does football, gym, swimming etc.

The GPs tried fobbing us off by saying it was a post viral (he had chicken pox at Easter) but the temp kept on coming with the rash. Finally one GP heard us, sent for bloods and now we have consultants puzzled. because he doesn't seem to have all the symptoms.
I think it is this JRA thing. Does anyone out there have any advice? I'm sitting here in shock. Neither of us have arthritis in the family. He was perfectly fine one day and then temperature and rash the next day.

Does this thing go away? Will he grow out of it? :(
Thanks in advance.

Bump??

my DD had it at 18months and grew out of it much more quickly than the docs expected but everytime she has joint pain now it is a panic

it mainly affected her hip and she couldn't put her foot on the floor without screaming

1 week in hospital on steroids the 4 weeks of bed rest (interesting with a toddler)

have you have the blood work back or are you still speculating?

We've had 4 rounds of bloods taken. His ESR is constantly going up (35, 50, 63, 80) but his CRP came down at the last couple of measurements (12 at last count). His rhuematoid factor is negative and so is his ANA which apparently points to the systemic JRA....

Consultants have screened out all viruses as far as I know. It just seems so weird. This onset. I am still hoping its not it!! And reading google does not help!!

How did your dd get diagnosed??

Sorry when I said I think it's JRA I should have said the consultants are veering towards JRA. Having thought it was herloch-scholein purpura for the longest time.

she was a bit off coulour in the morning, I put her down for her afternoon nap in my bed and about an hour later I heard her scream -thinking she had fallen out of bed I ran upstairs to find her standing up holding onto the bed, temperature through the roof and refusing to put any weight on her right leg

took her to A&E where they picked up on it really quickly, especially with me blathering about feeling guilty about her falling out of bed (she hadn't, she'd just tried to get up) immeadiate blood test and admitted

she had an ultrasound on her hip the next morning and there was a ridiculous amount of fluid in both her hip and knee joint

I'm sorry I can't remember blood results (6 years ago now) but she is now absolutely fine, we don't have any follow up or anything

not sure if there is a family link or not as my older sister also had it as a child, worse than my DD but is now a paramedic who ride mountain bikes and runs marathons for fun trying to be reassuring but not sure if it's working or not

Hey DrCrab,

I was diagnosed with JIA when I was 4. I am 31 now. It is a huge shock to you I am sure, my mum was devestated when she found out. It was a long diagnosis too because doctors couldnt conceive that a child had what is considered an old persons condition. The doctors will try to rule everything else out before actually coming up with the diagnosis. Has he had xrays or scans?

Medical treatment could be infusions (such as enbrel, methotrexate) where he goes to hospital approx once a month and is "infused" through a drip. This usually lasts about a month. He could be on anti inflammatories, steroids (injection or pill), pain killers. He could be referred for physio, hydrotherapy and if he is attending school, may need an assesment with an occupational therapist.

I would recommend you get on board with your rheumy and arm yourself with all the facts. Then find a rocking support group. Ours is in Ireland if you are about?! Make sure that you supplement the meds with good food and gentle exercise. From a personal point of view, try not to stop him from doing things (unless really dangerous!), find alternatives, dont wrap in cotton wool! Be honest about the diagnosis and teach him to be confident, not embarrassed with it. He could grow out of it, many have. But if he doesnt, he will be fine. Trust me on that!

I also have systemic RA so if you have any questions, feel free to contact me! Hope ye are all ok, good luck with it!

Oh wow thank you both for your responses!

He's only had ibuprofen so far for his fever and pain which comes nightly. Rest of the time he seems pretty happy at nursery although he's definitely more subdued than usual.

He's an active child so he goes to gymnastics, swimming and footie. Plus likes riding around on his bike. He's actually been to all his classes last week which was great. The week before that he didn't want to go and I didn't push as we weren't sure what it was and I didn't want to aggravate him. It was also the week after he came out of hospital so I (and he!!) felt fragile!

I don't know whether his level of activity at the moment is indicative of how severe this is affecting him?

It's so good to hear that people have grown up and have coped with it. I am still reeling. We also have a dd who's younger...

Oops forgot to say he's had X-ray of his lungs and they were clear. Also had ultrasound of his belly/spleen/liver and it was all measures normal. We also have to keep a temperature chart at the moment to see when or how high his temp goes and have to do wee tests to look for blood I think...

Hi, I had JRA (or at least it was diagnosed as that) as a child, age 13, my knees would swell up, particularly the right and I could push the fluid around and freak my sister and friends out!! I was a figure skater and extremely active and had to stop skating as it really aggravated my knees. I was prescribed an anti inflammatory called naproxin. I also had to have ultrasound therapy on my knees, which i hated as it hurt, I think the physiotherapist was just pressing too hard. I grew out of it. My mother suffers from RA now, my sister lupus, so I am working up the courage to get myself tested as I have had some joint pain recently and auto immune disorders are rife in my family.
I'm afraid it's just a case of learning to cope with the symptoms, and pressing very hard for treatment if you are feeling like you are being fobbed off. Good luck, hope things work out.

I think you do need to be led by him at his age -if it hurts or if he is tired let him rest but don't insist on it

water is fantastic so as much fun family swimmig as possible

try not to worry about your DD, you can't control what will happen in the future and yes I know that's hard but needs must

My brother is 10 years younger than me and I remember when he turned four, he woke in the midde of the night crying from a growing pain. My mam was hysterical and upset, thought history was repeating itsef. I never knew how stressed she was from it all till then. She keeps a closer eye on him than me!

My point is, try not to worry bout your daughter, she will be fine too.And you will be too!

How long did it take you to grow out of them if I may ask? They are thinking of referring us to great Ormond street. I have no desire to commute up and down or live separate lives! My dd is still breastfeeding so I can't stay over in hospital...

DD was symptomatic for 9 months but managed very well, and was told it was gone after 2 years but after the initial flare up was otherwise very well, pain managed well etc

my sis had it for 4 years aged 9-13 but grew out of it and again once it was under control she managed with it ok

OP it was at least a year, maybe two when it finally went away. It was a long time ago so I can't remember exactly, but it did go away.

Thank you everyone. It's v encouraging to hear from others who've had it that it's cope-able with and can even grow out of.

We have another blood test on Tuesday. He's been putting on weight (he did lose a kilo over 10 days which was ridiculous) and even though he's having a temperature every evening it's not that high (37.5). His rash is back though...

We received a phone call from great Ormond st and so we have an appointment on monday at 1130. Wish us luck that they can finally diagnose this. I've been told to pack an overnight bag even though we don't know if we are staying.

I'll be leaving dh with dd who's 20 months and still on boob... I guess it's time to night wean!!

Pray for us (if anyone is that way inclined...). Thank you.

Just saw this, hope all went well. Thinking of ye... Let us know!

They haven't had a diagnosis yet but they are nearing it I think. They're doing a bone marrow aspiration and a lymph node biopsy tomorrow to rule other things out before they go down the path of steroids.

Hold my hand someone!!

Hi its me Mordecai! Holding hand here, nothing is as bad as the not knowing. Just remember how much better it will be when you have a diagnois and you can be pro active and help.

Thanks. He's just gone under now..... he was struggling and I felt so guilty!!!

Thinking of you drcrab - they sound like they are being incredibly thorough which is a very good thing.

Thanks Wendy. I just wish they know NOW! My dd is 20 months and at home. Dh is with her. And I just want DS is go back to being his normal self.

Hi drcrab I was just wondering how your son is?

Hi wendy he's still in GOSH. They are still eliminating viruses and other things. He's in good spirits though and naproxen has worked a treat with whatever aches he might have had!!!

Thank you for asking. I just need this moving onwards!!!