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Juvenile Arthritis

(20 Posts)
Aprofessional Mon 03-Oct-16 16:02:01

Hi all,

My dd is 2.5 years old, and last week couldn't put pressure on her feet, so fast forward us taking her to the doctors. She went for bloods which showed up an inflammation. We were then told to go back to a&e if she still wasn't 100% which we did. She's not been herself. She is still complaining about pains and yesterday tears started rolling down her cheeks after we were walking. We have a follow up next week, but I'm not sure how far we'll get as it seems quite difficult to diagnose.

Has anyone else come across this and what were the symptoms to watch out for?

We've already noted her appetite hasn't been great, she's very lethargic and she just doesn't seem fully there if you know what I mean. We are wracking our brains trying to figure out what's going on - as the pain seems to be there but it seems at times she doesn't want to say it's sore.

How did you go about getting a diagnosis?

user1469534265 Wed 05-Oct-16 18:32:33

Hi my 4yr old has JIA.
Started out complaining of pain in knees early AM but frustratingly fine by time of day got a drs appt. Spent a day in A&E being "that parent" after I got fed up of being fobbed off. Got an interim diagnosis after they did x rays and blood tests to rule out other things. Confirmed by specialist rheumatologist at follow up appointment.
Now 2 years later, weekly meildication keeps it under control.
There's a Facebook group "juvenile arthritis parents" that's full of advice if you search and request to join.

Aprofessional Thu 06-Oct-16 04:01:50

Thanks for the reply. Currently sat in the hospital after being admitted and they now think it's a neurological condition as opposed to Jia which we were referred for. So we've spent the day having tests done, and we're getting more done tomorrow including an MRI and potentially a lumbar puncture. She still has all the above symptoms and they don't think it's rheumatology now at all that we need to speak with.

user1469534265 Thu 06-Oct-16 19:09:04

That sounds really hard, hope you get some answers soon x

Aprofessional Fri 07-Oct-16 22:49:31

Thanks! She's been seen by a few (pretty much every dept) consultants and all are stumped. She is officially hypermobile. They've now not ruled out jia as it could still be a possibility! But we'all have to wait and see. Will update when she gets an answer! Xx

imip Fri 07-Oct-16 23:10:56

My dd, then aged 6, was diagnosed with JIA, about a year later this was re-dx as joint hypermobility took a very very long time to get to this point of dx.

Dd experienced a lot of biomechanical pain as a result. I hope it can all be explain this 'easily'.

Aprofessional Fri 07-Oct-16 23:27:06

I don't think it's been diagnosed 'easily'. As I've said, we've met pretty much every dept. She's been poked and prodded. She's been screaming in pain for a few weeks. The physio started examining her and immediately asked if anyone in our family has been diagnosed accordingly. He said she is extremely flexible. She has already had a pulled elbow this year. All very explainable now. But we still have tests to go down and as she is 2 and a half, she is still young. These are his words. He said it explains a few issues. He saw her walk. But if it was easy, I'd love that! But it certainly wasn't.

RockinHippy Sat 08-Oct-16 01:08:36

I just wrote a long reply & lost itconfusedangry

I will write again tomorrow if you need more info

But B12 deficiency/Pernicious Anaemia - any relatives with it?? How is your health ?? Vegan?
If yours is low, he would be born with low B12, which would get lower over time if for some reason he cant process B12 properly

Its commonly misdiagnosed as other things & massively under-diagnosed

Its also linked to hypermobility

The painful feet is a common symptom

The zombie like not there comment struck a big chord with me as I saw this in DD when she was at her worst - she also gained extra hypermobile joints too - now stable again after B12 injections

RockinHippy Sat 08-Oct-16 01:11:09

Neurological symptoms happen too, people get misdiagnosed with MS

AndNowItsSeven Sat 08-Oct-16 01:12:52

Have they suggested ehlers-danlos syndrome?
I hope you get answers soon.

RockinHippy Sat 08-Oct-16 01:19:24

Writing more now as spotted you are at the hosptital...

She needs thorough blood tests, these are not standard tests & its often missed - my DD ended up in a wheelchair & nobody thought to check her for it. Her bloods were all in range too, but borderline on several - NICE guidelines say treat on symptoms regardless of tests as all tests are unreliable

These are the tests

Serum B12 - Active B12 would be better, but can be hard to persuade them yo do as it costs more
Intrinsic Factor
Parietal Cell Antibodies

Kids need more B12 than adults too, so pass that on as too often they go by adult values - this happened to us

Adding a symptom list & NICE guidelines treatment flow chart ...

RockinHippy Sat 08-Oct-16 01:25:12

We have Ehlers Danlos Hypermobility, B12 deficiency is linked - DD ended up in a wheelchair, with a hist of problems including sensory processing disorder & amplified pain syndrome, raging insomnia, 2 hours was a good night, nuro symptoms & more. We both had painful feet on walking

B12 injections cured most of it & had her able to walk again in under 2 weeks!

RockinHippy Sat 08-Oct-16 01:44:29

Sorry for bombarding you, but I've been where you are right now & I'm hoping this info could help

I'm adding links, this one is for the doctors...


RockinHippy Sat 08-Oct-16 01:55:48

This link might be useful to you...


RockinHippy Sat 08-Oct-16 02:21:00

Trying again with that last link...


RockinHippy Sat 08-Oct-16 02:23:53


I can't separate it from the closed facebook group its posted in

I took a screen shot of the symptoms bit...

Aprofessional Sat 08-Oct-16 07:50:20

Thanks so much Rockin I'll go through all that today! We get day release today so going to get out and about. Xx

RockinHippy Sat 08-Oct-16 11:39:22

I hope you both manage to enjoy a bit of down time

I managed to find this. Its a recent Dutch study on needed B12 values in kids, its the Dutch equivalent of the BMA, so is reputable. This helped me get treatment for my own DD

It states that at your DDs her B12 levels need to be above 560 !!

Unless you are in GOSH, where they treat anything under 315 as urgent, her doctors are more likely to go by adults values, which are often way too low even for adults. Usually 200.

Ask if they have tested her B12 - if yes ask the results - if her results are under 560, show them this - if they are under 315, get them to speak to Great Ormond St


There is a fantastic Facebook group, who helped me learn & fight for treatment for my own DD (&mine)
"B12 Deficiency and Pernicious Anaemia Support Group"
Lots on there have medical back grounds & where linked to PAS, so they are very knowledgable, they are also lovely people. Theres a ton of info & NICE, BSCH & NEQUAS guidelines in the group files there too.

Really hope things turn around for you both soon. Don't give up you will get there as I Did, you are an amazing mum flowersflowers

Aprofessional Mon 10-Oct-16 21:59:56

So we got discharged today. We're not in the uk (although she was born there!) so gosh is out. Her bloods have been sent off to a university but as of yet, no answers. Her bone scans were all clear. Her white blood cell count was coming down and ESR too. Back on Friday for more tests and back to meet consultant on Monday. She's better off at home getting sleep and having stuff to do. Currently still got radiation in her system so we keep calling her radioactive baby! I'll keep you posted rockin!

RockinHippy Tue 11-Oct-16 12:07:37

Good Luck, I really hope the blood work shows up dome answers & treatment soon!

Your comment on radiation might be relevant as Ive read that can deplete B12 levels, it did for a friend of mine. Hoping the blood results make diagnosis easy, though perhaps don't rule it out if bloods are "in range" & you can relate to the symptoms lists I posted. My own daughters level was 412, lots of things can skew the blood tests results, plus they are not reliable, so they are meant to treat on symptoms, not blood results, as its a harmless, water soluble vitamin, so cannot harm, but can do a lot of good.

We managed to get a "therapeutic trial" for our daughter in the end. After over 18 months in screaming pain, stuck in a wheelchair (on a good day) unable to sleep for more than 2 hours, sensory processing so bad she couldn't even bare her room light on as it made too much noise, anxiety & phobias, headaches & much more - first injection her tinnitus stopped & she slept a full 8 hours for the first time ever, by the 6th injection she was walking again & her pain was 90% gone & no more headaches & big improvement in anxiety too.

She is also hypermobile & has a diagnosis of *"Ehlers Danlos Hypermobility"*too, but the symptoms of that have improved massively with B12 injections too, they are linked conditions.

If the doctors don't find any other answers, then the group I mention below might be good for you to join anyway. They are a worldwide organisation, run by people in several countries & will have members, if not admin where you are. They will be able to help with the system local to you & how best to get treatment, plus what else your DD needs to take in order for the B12 to work properly

Keeping everything crossed for you, enjoy your time back at hime & hope you manage to get some much needed rest flowersflowersflowers

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