My 2 year old dd has just been diagnosed with juvenile arthritis

[dragonseye]

feeling a bit shell shocked. Can anyone give us any information? We've been in a&e for 8 hours today whilst they ran various tests and eventually gave a diagnosis of juvenile arthritis. They said she will be referred for further tests next week but just feel totally in the dark about what it all means for her (and for us). Anyone with any experience?

[dragonseye]

bump

[OhYouBadBadKitten]

No experience, just a bump for you. It must be rather a shock.

[mummytopebs]

Hi there are people on here whose children have this condition because they were speaking to me last week because my dd is losing sight in her right eye and this apparently is one of the symptoms x

What are your daughters symptoms? I am going to mention this condition at dd next paeditrician appt x

[Frizbe]

{{{Hugs}}} my friend developed this aged 7 and I'm afraid still has it to this day (he's nearly 40) I'm not the best person to give advice on this matter as not living with it or dealing with it. I do recall seeing a fantastic tv documentary with someones daughter, an mp I think, who had been living with this since young childhood, I just wish I could remember who it was for you. I guess like any illness it varies in severity and can be controlled with various drugs.
Sorry I'm not much use, I just didn't want this thread to go unanswered.

[TheLadyEvenstar]

DS1 is 10 going on 11 he was diagnosed with juvenile arthritis at the age of 3. On the whole he is fine although it does only affect one knee. On some occassions his knee really plays up and he is in agony. I have found lots of gentle massages ease the pain.

[funnypeculiar]

Oh, am no expert, but a mate's daughter in Oz has this. She was diagnosed around 2yrs. Initially very uncomfortable and defn affected her ability to get around easily, but she had a couple of injections into the knee cap and that has made a huge difference to both her mobility and her comfort levels. Last time her dad was over he said that 90% of the time, you can't tell now - but occasionally she will be uncomfomfy and they have a rub to help her.

Have not discussed long term stuff, but they certainly all seem to be coping very well in the short term.

HTH

[dragonseye]

thanks for your answers. We seemed to be waiting so long for a diagnosis that it was initially a relief when we got one. Now it's sunk in however ive got a million questions and noone to answer them. I feel devastated. She was such a stong, active child and at the moment cant walk across the room. Also feel guilty because she had been asking to be carried everywhere for weeks and i had assumed she was being difficult and lazy.

When the doctor told us the diagnosis earlier it was so matter of fact, with no additional information apart from being told we were being referred to orthopedics and would get an appointment within a week! I just feel i cant wait that long now to start treating it. Sorry this is badly worded, am upset.

Would be good to hear from anyone else whose child has been diagnosed.

Mummytopebs - symptoms were that she had stopped weightbearing on her right leg. Ive read about the eye condition thats related. Sounds worrying too. Sorry to hear about your dd.

[dragonseye]

xposted with LES and funny. Thats encouraging to know. LES - how often to you think your ds' knee flares up?

[TheLadyEvenstar]

Dragon tbh it varies depending on what he is doing. If he has been running around a lot it can flare up. On the other hand he can swim a lot and jump around IN the water and not be affected.

I also find the cold weather makes his knee sore. so extra layers are always piled on...mind you with him going to secondary in spetember I don't think he will appreciate me doing that lol.

[nightcat]

Frizbe, you could be thinking of Max Clifford'd daughter Louise..

[Gravitygirl]

Hi

My daughter has Polyarticular JIA, poly..... as when she was finally diagnosed she had more than 4 joints affected. I know it sounds odd to say but you are lucky that this was diagnosed in a day, I had over 3 months of taking my daughter back up to hospital to make them listen to me before she was diagnosed!
Anyway, she was diagnosed at 11 months, she is now 3 years old. I wont go into too much detail about her treatment as it may not be relevant to you depending on your dd diagnosis etc..
If you want to talk then let me know, I cant CAT but if you want to leave email then I can email you?I hope you are ok, this is a shock but for now please try not to think abouut it too much x

[bubblesbabe]

My daughter was diagnosed with pauciarticular JIA aged 2 and is now 12. We have had our ups and downs and I totally understand your sense of shock as I remember saying to my mother....'well the worst case scenario is that it is arthritis'!! There is a fantastic book called Kids with Arthritis by Carrie Britten which is very informative. If you want to talk more then I can email you if you leave your email add.
Lots of love - it's amazing what you can cope with and amazing how incredibly tough these children are - my daughter has shown the kind of strength I would never have believed a child was capable of.

[dragonseye]

thanks bubblesbabe.

Things are getting worse for us. dd now has inflammed joints in one ankle and a knuckle in addition to her knees and is barely walking at all.

Ive gone from coping with it OK to finding it very distressing that she cant play with other children like she used to.

She is having cortisone injections tomorrow, im hoping this will help. She is also taking stronger NSAIDS but havent seen a vast improvment with them.

if you have time, it would be great to hear from you. katie(DOT)[email protected]

(obv DOT is . )

[ChopsTheDuck]

I don't really know much about juvenile arthritis, but I do have a child that suffers with severe joint pain, so I know some of what you are going through and sending hugs xxx

Do you have an occupational therapist, to help sort out anything that could make things easier for her, and are you getting DLA for her?

[dragonseye]

hi chops. i dont really know where to start with the benefits side of things. Have you got any advice?

I am going to ask at her appointment tomorrow about physio / hydrotherapy etc. Am suprised they havent mentioned all these things yet. Im still coming to terms with it tbh but have just spoken to a nice man at arthritis care who has given me some good advice and is sending me some info.

[ChopsTheDuck]

For the DLA, if you can get to your local jobcenter, go there and ask for the DLA form for a child. They will then date it and I think you get a month to return it for it to be backdated to the date you got the form.

It is available online, but better in the paper form and it is a bit of a nightmare of a form, rather intrusive, but it does sound like your dd would be entitled to benefits. How old is she?

There is a guide produced by cerebra which I found really helpful here It is aimed at children with brain related conditions but it gives you a good idea of how to fill in a successful application. If you pop on the special needs board on here too, people are always willing to help.

DLA is formed of two componants, a mobility payment and a care payment. Like your dd, my ds1 can't always walk because of pain, and he gets high rate mobility allowance, and middle rate care allowance. I don't think you can get the mobility until she is 3.

It is early days, but IME they do tend to not mention these things! Good luck with the appointment, and push for all the referrals you think will help.