Is there anyone who can talk to me about juvenile arthritis?

[wewillmendit]

Dd started complaining of pain in her right toe and ankle in January. She hadn't injured it so when she was still in pain after a week or so I took her to the GP.
When no improvement after a further two weeks he referred her to orthopaedics.
She had an MRI on it and we had results back today. There is nothing showing on the scan. So obviously relieved about that.

The doctor who looked at the scan has recommended a referral to rheumatology for testing re juvenile arthritis.

I know I shouldn't but have been googling and have worried myself even more!

have a look online for support groups , these can be a godsend and other moms can help you (& dd) immensely. pain management, and correct excersise is often the best way forward. I have ehlers danlos syndrome ( a condition where I get lots of pain in my joints etc) and find forums really helpful. and try not to google wait until you've had a firm diagnosis.

Our DD, now 7, was diagnosed with JIA last year. She started off with a sore knee which did show signs of swelling before she was diagnosed. Try not to google too much before you know for sure what the issue is.

One year on and our daughter has become much stronger again and is responding very well to her medication. We are hopeful that she'll be able to come off it some point over the next 3 months. It was very much a shock at first but all became manageable once the medication started to work. Happy to share more if you'd like to get in touch. Good luck with the tests.

my 6yr old little girl has just been diagnosed with polyarticular jia last december she lost lots of weight cudnt walk just lay about took her hosp who refered her gosh hospital they admitted her straight away to fibd out shes gt it active in 34 joints we are waiting to see if the weekly injections of methrotrexate works best people to talk to are drs google exagerate n scare people xxx

On gosh, this thread is a relief!

My dd7 was diagnosed with JIA in the year. Symptoms started in the right ankle in jan, was clear by march that is was oliarticular JIA. jossey my dd had the opposite to you in that she has put on weight because she is not moving as much. Your poor dd having it in 34 joints. it seems my dd has it only in the right ankle. She was always very active and free spirited. Spontaneous cartwheels and acrobatics have stopped, and I can see it really marking her personality being in constant pain. As her swelling is limited, she was not fast tracked to GOSH, so we've waited six weeks for the appt this Fri.

First line of treatment, naproxen, hasn't worked. As it is only one joint, the cancer treatment won't be considered (am I right in thinking this is a milder form of chemo with all associated side effects?). So we are off to GOSH in the hope of steroid treatment.

I'm wondering if other parents have experienced this, but (I'm sure well intended) people keep telling me not to do the steroid treatments but try diet instead. I look at that as complemtentary, dd is in a lot of constant pain and limping most days. I don't want to make it sound to catastrophic and I know there are much worse things, but it really affecting what we do as a family because she has such limited mobility. I'm getting increasing frustrated at people's 'helpful' suggestions.... I've digressed!

Op, the rheumatologist in the hosp we are currently at is hopeful. They don't do steroid injections there, hence the referral to Gosh. We get lots of physio, but it is very hard to make a 7 yo do physio when in constant pain. She can't really participate in swimming lessons anymore, she can't kick her foot. However, her amazing gymnastics teacher changes her class for her to suit her, and she can participate. This means that we are making her keep active and preventing her joint from stiffening. Tbh, she is fortunate that it is only one joint and we can still do this.

Sorry about the long post. Don't have many people to chat to about this who will get it, and tbh, feel a little in the dark about what will happen at GOsh and if dd will actually be pain free.

sorry to hear your daughter has been hit so hard Jossey. Gosh have been great for us. Our DD was originally diagnosed as oligoarticular but that soon became polyarticular. She had joint injections in 5 joints last August and they gave her instant relief. It took her legs a few weeks to strengthen again but she was like a new child. I would highly recommend the injections if you are both offered them. They are not permanent but do give immediate relief until methotrexate starts working. We didn't do oral steroid treatment as we were able to go from naproxen to the joint injections.

We opted for the tablet form of methotrexate because DD at the time was very resistant to needles but the metho injections are supposedly more direct, effective and have less side effects. DD was taking the tablets whole for a while but we are now having to crush and hide them in food as she was getting stressed about taking them. There is also a liquid option which we didn't choose because I heard it was oily and thought that would be worse for her.

Side effects have been a metallic taste in her mouth, some loss of taste buds, real tiredness the day after the medication and some tiredness for a few days after that. Occasional upset tummy (minimal) but never ill. She takes the medication on Fri mornings now so the worst of the tiredness happens at home. All in all, side effects have been less than I was expecting. I still hate the idea of pumping her with that medication but she is so well now that it was obviously the right choice.

DD also got uveitis so if they don't offer (sure they will), make sure you get eyes tested as they cause more complications than the joints.

Sorry for the long post but hope some of it is helpful. Gosh doctors have been great (admin not so much) so you'll be in good hands.

That's really useful info water, thanks...

Though we've been under the car of pead rheumatology in our local hosp for three or so months, no mention of the eye specialist, so I will push for that. It's very encouraging to hear how your dd has responded to treatment. My dd is starting to get down about it, she has three younger dds and I guess she can see them pain-free.

Does it mean that your dd is restricted from doing extra-curricular actitivitied on the weekend after having the metho? Tiredness etc...

Working myself into a bit of a state about this, even though for the past 3-4 months I've tried to take it in my stride!

Hi imip. DD isn't restricted at all from activities. If anything, they would be a good distraction from her tiredness.

Second guessing what they will say to you on Friday but if your DD only has it in one joint, they may suggest an injection and hold off on the methotrexate to see if the arthritis continues or returns after the injection. I haven't heard of oral steroids being used long term.

Our local hospital didn't suggest ophthalmology either but thank goodness gosh did test her from the onset as she had to start eye drops for the uveitis until the methotrexate kicked in. Her eyes are now clear with minimal inflammation.

Hope you get all your questions answered and a good treatment plan laid out on Friday. Btw, we bought our daughter a book called 'What's up with Eleanor', Medikids explains JIA. It's in comic format and a bit annoying but our DD has read it a lot and it is good for explaining what is happening to her.

Thanks for book recommendation!

Yes, current cons suggested steroid shots only as they'd prefer not to use cancer drugs when only one joint is affected. So we shall see how we go. Worried though as she vomits when she has a blood test (good JIA patient, isn't she,) so I'm hoping or some form of ga without a cannula.

She's been getting v upset and wanting to go back to being a baby when everything was 'ok'. I thought overe the past 6 months it would ebb and flow with good and bad periods. It's surprised me by its constantness and the fact that meds haven't even appeared to touch the sides of her pain.

V pleased for you dd, great that it is all working, must have felt like a v long road to get there...

Your poor dd. It's hard for them to make sense of it all. My daughter ended up in a&e last spring before we started any treatment because she cracked her chin in a pool. She asked me then when her life would be happy again :-(. It was a difficult year and we're very lucky she is responding so well right now. I'd push hard to get a quick injection if you can if your dd is in continuous pain. They were trying to put my dd on the list for sept until I broke down on the phone to the secretary (at the end of my tether!). Hope Friday goes well.

no she was sick when she.took the pill form of methro but since injections no sickness shea had 3 lots of 3day steriod insfusions in a canular and each time she was put on soluble tablet form to wean of after each infusion my little girl still crys every injection n.blood test just something im hopin she will get use to then xx

my dd has Jia. she is 18 now and diagnosed when 8. she has both psoriatic and enthesistis related arthritis in all joints apart from her back.

im only a pm away

Hi all. Sorry late back to this.
Thank you so much for all the replies.
Imip I hope all goes well tomorrow. I'll be thinking of you and your dd.

jossey sorry your dd is so badly affected.

water glad your dd has responded so well to treatment.

We are still waiting for appointment letter. Dd is struggling at mo as she is also recovering from a fractured elbow so is sore with that also.

Sorry Drewswife the page has just caught up for some reason and I have just seen your post which after dealing with a tired hurting dd has bought tears to my eyes.
She has struggled with writing today with her arm, and had to sit out of gymnastics at school with her foot.

I'm usually able to keep it together but I feel so helpless.

Has the hospital given you any idea how long you'll be waiting for the referral appt? Our GP contacted the rheum dept at the hospital (by fax!) to request that they treat DD as urgent because she was unable to walk in the mornings before diagnosis. This definitely pushed her up the list as the hospital told me that they classified all referrals into two categories and if the GP hadn't contacted them, we would have waited nearly 3 months. If your dd is struggling with the pain in her foot, it may be worth asking the GP for help? I hope you get some answers and support soon.

wesillmendit my dds the same. Missed out on tennis at school today (she did fracture her elbow last summer, though). I had the local hosp rheumy consultant's ph no, and I called it after she ended up in a lot of pain, unable to walk and continually crying. He saw me the next day and then referred her to gosh. He said if she was swollen the referral would have been the following week, but it wasn't and it too around two months.

drewswife your dd really has a lot on her plate, does she manage to keep pain free?

Appt today was ok. I realise why dd is a little overlooked, she really has no swelling at all (tiny bits, obvious only on close examination). Dr was v surprised, I see why she wasn't fast tracked as I googled pictures of JIA, and it doesn't look like dd (a little red and hot, but not a lot).

However, dr thinks she has the main and underlying ankle joint affected so she needs an ultrasound in three weeks, with steroids a month after that. She has one leg shorter than the other as a result of the arthritis.

I was battling with 2yo dd4 at the appt and I didn't ask the side effects of the steroid shots, I've googled a little, but does anyone wish to share what they have experienced. Dd is already pretty short and her 5 yr old sister is taller than her. It's a bit worrying...

(Sorry for the hijack too!)

my dd has enthesistis related so rarely gets the hot joints. for her it is the swelling of the tendon ends. the enthesitic points. she has massive pain problems but lives a fairly great life. at the moment she is rebelling. drink, smoking and partying hard. I pick up the pieces as per my job description.

enthesitis related is generally a boys condition and it affects all the main joints. the psoriatic is similar but it affects her toes and fingers. she needs a jaw replacement too but consultant wants to hold off as long as possible.

the most important thing you can do for your newly diagnosed kids. is pester doctors. dont let them fob you off. get hydrotherapy, physiotherapy, keep them mobile. if the kid lies down to it or you let them because you feel sorry for them. their arthritis wont improve.

I spent years telling my daughter to find a.different way to do it.

swimming is amazing. it relieves pressure on their joints and keeps them fit.

keep their diet good. but sometimes they need a tonne of sleep. I found that when DD was in flare she would sleep a day and night easily.

Wow, good for your dd, drewswife brilliant to see she is not letting arthritis get in her way, but also sad to see how much of an impact it is having on her life .

We do get lots of physio, we keep her moving, though it is an effort and I feel quite mean. As a result of the arthritis, she now has one leg shorter than the other, so I know we need to push on with treatment pretty quickly. We've kept up her gymnastics with a brilliant coach. Swimming lessons stopped though. Teacher was crap tbh and couldn't work the class around her, Can't kick her foot and her confidence has fallen through the floor.

The drinking, smoking, partying hard, brill to see yr dd is a normal teenager!

imip what are physio doing to lengthen her leg. there are exercises thay can help woth strengthening and lengthening. we used to have this issue. see podiatry too. insoles are fab. they can evwn things out so the hips wont become affected as a side effect.

unsure what area you live in. we live in Ayrshire and attend yorkhill. the rheumy team there are brilliant. she sees .podiatry, rhuematology, psychology ( they do need to adjust to the changes.in their lives ) maxillo facial, pain clinic and her gp.

she is horrible at the moment. im hoping my kid comes back to me soon and replaces the horror that is in my life just now.

contact arthritis care. Arthritis care provides a course for young people.called joint potential. its a wonderful course that lets them meet others with their condition. I believe firmly that its important they see others living life and not laying down to the illness.

if you want to pm me you can.

been down this road for a long long time now. if your child would like to speak to mine I can give you her email address she is nice.to younger kids. not to her.mum sadly.

Not too sure,as physio don't know yet. We have an appt next Monday. We're in central London, so care has been based at our local hospital, but steroid shots an only be done at GOSH. I was worried about her hips, I had my 2yo with me at the time, who was particularly challenging, and I was just interested in having a clear understanding of all the timelines, that I completely forgot about asking about the leg-lengthening and steroid side effects!

Dd1 is also very shy and just hugs me the whole appt, so I am really trying to get her to speak for herself!

I will google 'joint potential' that's a fantastic recommendation. ATM, it is me pushing her all the time to walk, exercise, swim when she just wants to paddle etc. it feels very mean just to keep her active....

Dd is to shy to contact your dd! Bless her. A very generous offer and maybe one day she will accept the offer. Some of her friends have been starting to tease her about her ankle, which is very upsetting. I was going to see if their was some support group for her, which feels strange as I facilitate a support group myself (for something completely unrelated).

Thanks for your help and support, I really do appreciate it. I know it must be tough that dd is 'being a teenager', but I'm sure in the down times of arthritis, it's good to know it isn't holding her back from enjoying her life fully...

Sorry for the hijack again op, but I hope this process is giving you some idea for what may lie ahead for you.

Dd has had so much time off this year, I am expecting one of those letters home from school very soon!

Does anyone have experience of JIA being in full remission but uveitis appearing? We were do to begin cutting down the envelope injections to just once a week (after 2 years treatment and 6 months without flare). When uveitis appeared, it has not responded to steroid treatment including drops and direct injections into the eye ball. Treatment for this has being on going since Jan. Dr's are talking about changing from enbrel to am infused drug that will be admistered as an in patient once a month. Does any one have experience of any of this? As things were going so well the uveitis diagnosis hit us like a ton of bricks and has put us back in the unknown. D's is 7 be.