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Juvenile Arthritis (JIA)

(6 Posts)
strongswans Sun 24-Apr-16 14:27:51

Hi, are there any mums out there of children with JIA after being wrongly diagnosed with something different last year our consultant thinks my ds (10) will eventually be diagnosed, and we are waiting for an appointment with Rheumatology at GOSH. It has already changed my ds's life a lot, he was a competing dancer and has had to give it up, he was having to take morphine in hospital for a while at the beginning of the year. It is heartbreaking to watch him like that. Luckily at the moment it has eased a little and he can walk unaided. Takes a long time to get going I the morning though. Would just be good to hear from others and maybe pointers of organisations/groups for information. Thank you!

imip Sun 24-Apr-16 23:13:51

Dds situation is the reverse of yours. She had a very painful ankle that stopped her from walking - just agony for her, starting about 3 years ago (she's 9yo) 6 months later it spread to her other ankle and she was diagnosed with JIA at our local hospital. Medication did nothing and it was very sad to see dd not even able to talk the 5 min to school. Teachers tried to keep her in at lunch time so she didn't have to use the stairs she was in so much pain. We were referred to GOSH for steroid treatment, and then rediagnosed with joint hyper mobility syndrome. I'm wondering if that is what you were originally diagnosed with???

Dd still suffers from a lot of pain. She participates in gymnastics and swimming, but is unable to perform as good as others despite being able (eg, cannot vault at gymnastics despite being more than able and a decent gymnast, it is far too painful to take the impact). She would not be able to do a full day out, eg trip to the zoo, sight seeing etc etc. up until recently, we could put her into dc4 buggy (she's a little 9yp, my 7yo is taller than her), but we recently got rid of the buggy. I'm not quite sure what we will do now.

I've posted about JIA here before, with some responses. I hope someone else is along soon..,,

Mummytron Sun 24-Apr-16 23:28:37

I'm interested in this...
My son (10) has joint hypermobility syndrome and I wonder about JIA. I have an inflammatory arthritis so I keep an eye on him. The pain he can get from the JHS is awful. At the moment we have knee pain which they have given him crutches for. I sometimes find it hard to believe that it can cause so much pain.
It's horrible to see isn't it. Xx

strongswans Thu 28-Apr-16 12:58:40

Sorry for the very late reply, I haven't been well and DS had some appointments, heard from GOSH and their next appt is end of June for Rheumo so hopefully he won't be too bad before then. imip he was originally mis diagnosed with Functional Movement Disorder, the neurologists did and MRI and x rays and cleared him from their point of view, so decided it was caused by stress. To be honest I was never fully convinced but he had been through a lot last year so went with it, he had counselling and sessions with a psychologist and dealt with everything, then he got a lot worse. I questioned it many times and the consultants wouldn't listened, I said I'm happy with that if you at least get a Rheumatologist to see him due to family history but no. Luckily the new Paed looked further, ran extra bloods, looks at the small symptoms like mouth ulcers, recent sun allergy etc.. and put it all together as pointing to something physical. Just frustrating it has taken so long and he has been put through so much pain! Sorry to go on a bit!

Mummytron its always worth looking out for with the history, I've learned that, and always ask for more information. I'm sorry your son is in so much pain, it is so hard to watch isn't it. I just feel so helpless. DS has had to be given Morphine a few times this year and we now have a form of codeine for home. imip I'm sorry to hear your daughter still gets a lot of pain, I'm glad she still does her activities though! It really is amazing how much children can do! I know what you mean about the full days, we had a trip to Australia at easter which was booked before he had any symptoms at all, we had to seriously adjust our expectations and adapt, lots of stops, long lunches, short days etc... We had a lot of help at the airports too. DS has crutches, but he was so severe through Jan/Feb into early March he couldn't walk at all. We had to buy a wheelchair, consultant recommended but hospital wouldn't provide! I know its a lay out but maybe something to think about. DS's wasn't to unreasonable and has leg rests we can raise when he needs.

ryanbeth1 Sat 04-Jun-16 15:08:03

Hi, I'm sorry to hear what you are going through.My daughter spent months getting xrays,mri and CT scans because she broke her ankle 4 years ago had no problems since until last year when it started getting really painful and swelling up. She almost went through surgery to fix what they thought was causing the pain until my consultant decided that he felt uneasy about this old injury when the other foot started to flare up with swelling and referred her to a joint consultant. Since then i've done all the chasing. I'm lucky to work in the NHS and have a idea of who to contact and after 16 weeks of constant emails and phone calls my daughter now has a diagnosis of psoriatic arthuritis. We have just returned from Glasgow after her getting steroid injections into her feet since the tendons have turned into a watery mess! She should have been started on methotrexate injections by now but again i'm constantly chasing her care plan. I am getting there but my goodness i've never had so many lonely frustrated tearsin my life. She is a twin and every time my other twin complains of a pain my heart skips a beat. It's everything else you have to deal with... don't even get me stated on the education department!!! haha

apivita Mon 06-Jun-16 21:56:57

Hello! Our child has SJIA. He was diagnosed after faffing around for 6 weeks of rashes, temperature and joint pain. We were referred to GOSH and they saw us pretty much the following week. He went on a year's methotrexate but before that he was on prednisone. He's in remission now hopefully. PM me if you want to talk. cake

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