Warm boot recommendations please

[bluekarin]

I was wondering if any of you know about this condition. My YD who is 9 has recently been diagnosed with it. Its affecting her knees and ankles and occasionally her groin and she is in incredible amount of pain. She is taking Voltarol which is helping a bit, but not a huge amount. Her doctor told us that if this didn't help she would need to have steroid injections into her knees and ankles (under anasthetic I hasten to add!). I have read up a bit about the condition on the internet, some of which frightened me (thank you Bupa website) but I thought I'd ask on here as I know there are a couple of nurses/ doctors. And maybe some of you even know someone who has this/been through it and what is the best way to go about things. We have been told she needs to keep her joints moving but my hubby is wondering if rest would be the best thing. Its so hard to know what to do for the best. She is such a happy girl and was so active and really into her sports and dancing, but now she can barely walk upstairs or across the landing in the morning when she gets up and she is so upset alot of the time because of the pain and its really breaking our hearts.

[jlo]

I am afraid that I have no advice as I have never heard of the conditionl I am really sorry to hear that your daughter is in so much pain and hope that it can be resolved sooner rather than later.

[jenuk99]

I have a friend whose 4 year o;d has this condition. I belienve that she has regular steroid inj and and medication that is given my oral syringe. Sorry its not very useful information but I can try and find out more info for you.

Jen x

[Cate in NZ]

Oh, I'm so sorry to hear about your daughter . To be honest JIA is not a condition I know much about, I did know one young lady who had it, she was diagnosed in her early teens and she was maybe 20 when I first met her, and I do know for sure that at times she had the most horrendous struggles with pain and activity, but I don't know too many details about her history or the severity of her situation.

 

ARC are an interesting source of info, there's a couple of links from them that might be worth reading although I don't know how useful they are (I've not read the links myself, I just know of ARC as a reputable source of info) http://www.arc.org.uk/arthinfo/patpubs/6054/6054.asp

http://www.arc.org.uk/arthinfo/publist.asp?ProductClassID=5

(I particularly like the idea that they have an info leaflet for school teachers, naturally teachers don't know about the huge range of medical conditions that can affect their students, so it's great that there is info that can be given to the teacher to help them understand the specific problems that a child with JIA has).

 

There's also an article on the national rheumatoid arthritis website, that looks like it should be helpful (but again I've not read it personally).

http://www.rheumatoid.org.uk/article.php?article_id=26.

 

I hope that that helps.

[Egluntyne]

Sorry to hear about your daughters condition.

[Lesley]

Sorry to hear about your daughter. I don't know anything about it but we've been having similar problems with Lauren and all I can say is read all you can and make sure that doctors take everything seriously.

 

I've had steroid injections under my kneecap - I'm glad they've mentioned anaesthetic for her should she need them.

[moochoo]

Hi, I work at an orthopaedic hospital and see a lot of JIA. It's an unusual condition in that there a so many diffent degrees of seriousness and other related symptoms. It's an inflamatory condition which affects the joints and can be coupled with excema, asthma and psoriasis.

The majority of youngsters do grow out of it by adulthood but there are a handful that carry on with symptoms throughout their lives.

If she can't control her pain with standard medications the steroid injections are very successful and can last 6 months to a year.

If she can control her pain it's best that she continues with as much sports and activities she feels comfortable with. Regular activity helps the joint to lubricate and can help reduce inflamation. She should only do what her pain allows her to.

I hope you can get to manage this for her and that she does grow out of it. Do be insistant with the doctors if you don't think she's getting adequate pain relief or if her symptoms change. You know her best.

[Plum]

I looked after children with JIA years ago and agree with what Moochoo has said. It does affect children to different degrees. Sorry your daughter is affected and sending positive vibes to you supporting her.

[LisaP]

I'm sorry I can't help in any way but to send HUGS and positive vibes to you and your daughter - she sounds like a brave little girl

 

Lisa P

[ChickenJo]

Hi - so sorry to hear about your daughter ... I had JIA when I was growing up.

 

It was diagnosed when I was about 8 or 9, pain in the knees, hips and shoulders with me. I cant remember anyone suggesting steroid injections (but im 36 so this was a while ago), but I do remember having physio twice a week to strenghten my muscles and the increase the mobility and taking various anti-inflamatories

 

I was massivley active as a child ... netball, gymnastics, swimming, dancing you name it ... but once the pain was controlled i continued with it all and I think that actually helped a lot. I grew out of the worst of the symptoms when I was in my mid-teens although I still had shoulder pain off and on into my early twenties.

 

As an adult I get the odd twinge in my shoulders and knees, but its only usually in damp weather and it never bothers me that much

 

I know everyone is different, but I hope it helps your daughter to know that it can get much better ... I was dancing with Ballet Rambert when I was 18/19 and did the 4 peak challenge last year.

 

Jo

[bluekarin]

Oh, I'm so sorry to hear about your daughter . To be honest JIA is not a condition I know much about, I did know one young lady who had it, she was diagnosed in her early teens and she was maybe 20 when I first met her, and I do know for sure that at times she had the most horrendous struggles with pain and activity, but I don't know too many details about her history or the severity of her situation.

 

ARC are an interesting source of info, there's a couple of links from them that might be worth reading although I don't know how useful they are (I've not read the links myself, I just know of ARC as a reputable source of info) http://www.arc.org.uk/arthinfo/patpubs/6054/6054.asp

http://www.arc.org.uk/arthinfo/publist.asp?ProductClassID=5

(I particularly like the idea that they have an info leaflet for school teachers, naturally teachers don't know about the huge range of medical conditions that can affect their students, so it's great that there is info that can be given to the teacher to help them understand the specific problems that a child with JIA has).

 

There's also an article on the national rheumatoid arthritis website, that looks like it should be helpful (but again I've not read it personally).

http://www.rheumatoid.org.uk/article.php?article_id=26.

 

I hope that that helps.

 

Thank you Cate for the links - they are most helpful and I have printed off the teachers leaflet so they have a bit more of an idea as to how she might be at school.

 

 

Also, thank you all for your help, advice and support. When she was diagnosed with JIA I thought thank god now something can be done about it, not realising how serious it can actually be. I am really worried that she might be one of the few who has this for a long time and will affect her in the future too.

 

She too ChickenJo is such an active girl and really wants to do things like dancing, horse riding and just generally running about. We are going to stop her swimming lessons as she can't do the strokes needs to pass each level, but she can swim so we will be continuing that as more of a fun time thing. We have a trampoline which she has a go on and did say it helps a bit. But she is such a dizzy thing (and I mean this in the kindest way possible; she was a prem baby and they have lapses in concentration when they get older) and occasionally 'forgets' and twists her knees which is excrutiating for her. I wish I could take it away for her.

 

So, today I am off to the library for more research on it. Am also going to book an eye test as apparently it can affect eyes and cause blindness. And I am going to try and think that she will be over this in a few years at worst and not think about the more worst case things, otherwise I shall just cry.

[ChickenJo]

she sounds like my sort of girl ... i took up horse riding a couple of years ago and could do with some pointers!!

 

Id have a look into the alternative therapies as well ...

 

if I remember rightly there are lots of possible food triggers that (whilst not causing it) can aggravate the symptoms. Acidic things I think ... like tomatoes etc. I have also heard that accupuncture and Chinese medicine can also help, although Ive never tried either.

 

Try not to get too upset about it (easy for me to say I know), I think the key really is finding something that manages the pain for her.

 

jx