Rheumatoid Arthritis in Child

[TruthSweet]

My DD2 has just had her test results back after having joint pains since November (original thread here) and it shows elevated levels for rheumatoid factor - not sky but not normal either. I'm really worried about her long term future TBH, though she's better now than she was a month ago but is pretty battered around her knees/legs so is on ibuprofen for pain/swelling/inflammation.

Does anyone have any experience of rheumatoid arthritis or other forms of it? Whilst the test shows raised levels for rheumatoid factor it doesn't rule out/in other forms of arthritis as per the paed. today when she phoned to give me the results so it's not definitive that it's RA as it could still be another type.

She has been referred to the paediatric arthritis specialist Mr Hilaly at ESH but won't get seen for another 2-4 weeks.

Anyone care to hold my hand?

I was diagnosed with RA at 19, so didn't have juvenile RA but might be able to put your mind at rest about her future. I wish I could literally hold your hand and show you that a hand of someone with RA doesn't look, feel or move in any different a way than any other hand!

The worst time for me was between symptoms and finding the right treatment, once I was diagnosed things did start to improve - so it is unlikely she will often be as ill as she is now. The worst thing to do is look at elderly people with arthritis and assume that is her future, it really is not. My consultant would see me in a separate ward as it would upset me so much, but it didn't hit me until a few years ago how much better off we are now, with respect to treatment and medications (I had to mark papers from a medical exam and the majority of marks were not for saying RA, but for saying "prior to the discovery of x treatment" because you just don't get the same problems now).

Since diagnosis (12 years ago), I have had a very similar life to my peers, with only occasionally being forced to take things a little bit more slowly (not an entirely bad thing). I have gained three degrees, a husband, run triathlons, been on 5 day sea kayak trips, have own house and dog - I couldn't have asked for much more to be honest (although currently TTC so focusing a bit too much on what I don't yet have)! I honestly think I appreciate my life more than I otherwise would have and when I am ill I'm constantly surprised by how lovely people can be to each other. One other upside is the respect I have for my health, as I am aware how precious it is, so I don't waste time when I feel well - I never put off seeing friends, for example.

It will be hard, especially over the next few weeks, and I know my parents found my illness more upsetting than I did, so just be kind to each other and hold each other closer over the next few weeks - you can get through it. Also, don't turn down the option of having a support nurse - I find mine indispensable, even now. P.S. Sorry for essay!

Thank you for replying RunnerHasbeen - it sounds like you have had a fantastic life. I'm quite ! I'm glad you haven't been held back by the RA - you have given me hope

I think I'm just panicking a bit as DD2 is my 'healthy' daughter! DD1 has asthma, eczema, mild allergies and has just failed two hearing tests (high pitched sounds not profoundly deaf) and also needs her sight retested. DD3 has been in and out of hospital since she was 8 weeks old with bronchiolitis/viral induced wheeze and also has eczema but DD2 just has a minor bit of ezcema and has only had one overnight stay for a chest infection, she's barely even had a cold until last November .

I just worry about her being in the pushchair (we get the odd funny look especially if DD3 is walking and DD2 isn't), her long term prospects for independent walking (most of the time she is fine and runs but at times she is in a lot of pain and needs to ride in the pram).

I guess like you say I have an idea in my head of a elderly arthritic patient with gnarled hands and enormous swollen joints wracked with pain. I don't want that for my little girl.

I really feel for you and your DD. My DS1 was diagnosed with juvenile arthritis 3 years ago so I know how you feel.

Runner had lots of good info. The good thing that if your DD has arthritis it is treated quite aggressively. It seems to me that when adults get arthritis it's acceptable to live with discomfort and pain to some degree. This isn't the case with children. While there is no cure for arthritis the doctors do everything they can to completely alleviate the horrible pain and swelling it causes.

My DS has had his ups and downs, but on the whole it's one of the things that he does just have to deal with. Arthritis doesn't define him as a person - it's just one of life's problems. (I might sound dismissive and I am well aware that for some children it is life changing and this is different.)The majority of the time you would never know he has it, but there have been times when a wheelchair was necessary.

It has meant numerous hospital and doctors visits and he's well used to needles!

Sometimes I have worried about his long term future, but to be honest everything that can be done is being done and excessive worrying isn't going to help. On a positive note I'm grateful that he has something that is relatively common - this means that there are plenty of experienced consultants and nurses, people understand what it is (e.g school staff and friends) and there are new treatments being developed all the time.

I'm sure the paediatric rheumatologist and the specialist nurses will be a great help. Ask lots of questions -I don't recognise the hospital you mentioned so it isn't the same as ours, but the team we see are fantastic.

Sorry - I've given you an essay as well. But in answer to your question of course I'll hold your hand!

Just read your last post. Funny thing is that my DS has also been extremely healthy. (Something to my shame I might have been a bit smug about.) I don't thing he's had a cold for 7 years!

Arthritis is actually an immune disorder. The immune system is over active. So it's probably been the beginnings of arthritis that have kept him healthy all these years and not my breastfeeding when he was a baby!

Just wanted to say that I too have RA, though not juvenile. I was diagnosed at the age of 27, so 24 years ago. I would like to hold your hand too so that you can see it's not as terrible as it used to be. Whilst it is true that I have some minor permanent damage to finger and thumb joints, it's really nothing that stops me doing anything most other folk do and it's hardly noticeable when looking at my hands. True, it did curtail my violin playing career, but more because, in the early days, the flare-ups were too unpredictable and so I was terribly unreliable. I still play for fun and I teach too so I still have that part of my life open to me to some extent. I remember being very scared when I was first diagnosed as I had memories of my grandmother and aunt who were very badly affected.

Honestly, I have the odd flare up which lays me up for a couple of days but they are very few and far between. I take a little extra care about being around anyone with a virus as picking one up can lead to a flare up as can being overtired and/or excessively stressed. Other than that, I live the life of a normal 51 year old

Treatments are improving all the time and I am sure that your DD will reap the benefits and be even fitter 12 or 24 years on than either RunnerHasBeen or me!

Please don't be too down hearted. I am sure everything will be fine

Frantic - DD2 is still bfing (though I hate the word 'still' in conjunction to bfing ) so it's obviously not a magic bullet. On the other hand she is ill at the moment with a weird rash and 'strawberry tongue' so she's not all that healthy.

Thank you all for your reassurance - TBH I though the cons. paed. would tell me that it was all in my head and there was nothing wrong with her at all. I have OCD and am petrified I have Munchausen's By Proxy so I don't trust anything I see in relation to my children's health (yes, I realise I sound like a complete nutter, I'm not just convinced I might be....) so I'm a bit thrown that she actually is ill and that Ive not imagined it (as though a cons. paed. would order blood tests on the whim of a MBP mother @@@)

Hi truth, my dd has juvenile arthritis. She developed it when she was 2, it was diagnosed about 5 months later. The worst time was the beginning when they were trying to get the diagnosis and then a treatment plan sorted. She started on ibroprufen but unfortunTely it wasn't enough for her (although it can be for some patients) so they tried steroid injections which helped initially but eventually she needed something stronger. She currently takes methotrexate which suppresses the over active immune system. It works well although is a strong drug with some adverse side effects. Generally she is fairly healthy and gets on as well as other children, other times she tires easily and has the odd flare up which cause her problems. I don't worry about the future too much as the disease is so unpredictable it's impossible to know what will happen. On top of this major developments are being made with regards to treatments all the time so hopefully we might end up with a cure!
With regards to anyone saying ANYTHING about your DD in a buggy at her age, I almost silently DARE them to so i can casually humiliate them by explaining why

Any questions, please ask away x

No personal experience here, but I have a good friend who was diagnosed as a child. She is generally fairly well, although she has ups and downs (obviously) and has constantly improved her prognosis over the years (she was far more disabled when I met her than she is now).

She's lived a fairly normal active and was quite wild as a teenager . She has found some basic food groups disagree with her condition (so she doesn't eat much gluten, or any dairy iirc) - but she has worked this out over time.

She (and another friend I have who has osteo arthritis from being a teenager) swear by exercising to keep muscle strength up.

What will the first appointment with the arthritis paed. be like? Lots more blood tests? She will only have blood tests if I shovel skittles (the sweets not the game thingies) in her mouth to distract her so is diabetes/obesity on the cards

Can you 'grow out' of arthritis or is it life long?

Is there anything I should be doing in the meantime? Like seeing the GP, increasing/decreasing anything?

Our first appointment with the paed. rhu. involved cortisone injections in 2 joints. By this time DS already had a diagnosis of arthritis from a paed. at our local hospital. We have to travel to a different hospital to see a paed. rhu.

DS was 7 at the time and most children in his situation have the injections under a general ansethetic. This would have meant waiting another couple of weeks. (At this point he was unable to walk!)

We decided he would be able to cope under gas and air - he was fantastic. The next morning he got up and walked! It was such a relief.

Like Fresheye's dd my ds is now on methotrexate, although it's not having quite the impact I expected. He is now injecting it on a weekly basis and hopefully this will cut down on the amount of cortisone injections needed.

Forgot to mention in my first post, but the majority of children do grow out of juvenile arthritis. I think it is quite common to just have one or two flare ups and then never have it again.

Unfortunately there is no way to predict how it will pan out in the future - therefore not too much point stressing all the time about it!!

I wouldn't worry about bribing with skittles! My son's a bit older so I've just been honest - "yes love the needle will hurt, but it's got to be done. It will be over soon." Seems to work for me and is better than saying it won't hurt and then it does.

If your dd has arthritis she will probably just get on with it - the kids with the most problems seem to be the ones who cause the least fuss!

Good luck with your appointment and let us know how it goes.

I just want to echo what Runner said. I too was diagnosed with RA at the age of 19 and now I am on the correct treatment I lead a virtually normal life. Most people I work with have no idea of my condition and I too would like to hold your hand to show you how normal it is. I remember sobbing hysterically while in hospital surrounded buy old people in wheelchairs with twisted hands wondering how long it would be before I ended up like them. Now I don't even give this a second thought. I won't lie to you - the year between diagnosis and becoming more stable on treatment was VERY VERY hard. I think it's important to rememeber that if a drug is being recommended then that's for a reason the lists of potential side effects are scary but the actual disease is worse. I spent a lot of time with a trainee physiotherapist who gave me an amazing book called Arthritis at your age? If this is still available it may be useful for you to hear more positive stories. Wishing you and your DD all the very nest for a bright future.

yorkshire - DD2 is the biggest fusspot when it comes to doctors and refuses to co-operate, screams, she even once tried to ram her way out of the GPs with the pram.

It was such a surprise that DD2 hates drs/nurses/receptionists/hospitals/ambulances as DD1 has been flirting (in a baby way!) with Drs since she was a few months old (she had the meningitis purpura rash and had meningitis ruled out straight away because babies with it don't bat their eyelashes and giggle at the Dr apparently) and loves anything medical happening to her (has a collection of real medical equipment that has been used on her at home the wierdo ) and DD3 is just so used to Drs she doesn't fuss unless it is a nebuliser mask coming her way.

I guess because she has been so healthy she hasn't had a chance to get used to Drs. I supposed thats a good thing though .

Sorry rambling now...

Does arthritis if it has been untreated lead to long term problems or can the 'damage' for wont of a better word be reversed? I'm just worried that her joints have got damaged since November and will stay that way. Scratch that I'm just worried!

nannycheechee - thank you for your kind words. I'm so glad that everyone who has replied has a really good life even with arthritis. It has given me a lot of hope.

There is the risk of damage if it goes untreated (this is why you tend to get seen straight away once you have a diagnosis). However, it won't be as bad as it is now while it is actively swollen. The year I was ill (before under control) I had almost continuous bags of fluid on my wrists, and have very minor permanent damage as a result. I suspect it is because I once fell over and stuck my hands out when I fell, so not worn down as such. My knees, feet and hips have no lasting damage, even from a year of severe swelling. It only affects my ability to do press ups (when wrist at right angle), I don't have anything else damaged and basic things like typing are fine.

I was also very healthy until my immune system went OTT, only ever missed days at school to compete in sports events - literally didn't miss a single day of high school for illness. I think I always thought of myself as particularly healthy, which is why it was such a shock (also living away from home, so no mum to frog march me to Dr) and I let it get worse than I should have. I used to hate going to the Dr too but am totally fine with it now, more than most people as I always get an appointment within 24 hours - I was actually surprised when I had to book a smear and they only offered me the following week.

I hope I didn't sound too show off-y about my life, it is really very normal, I only wanted to be reassuring. In TTC I do worry about passing on my autoimmune problems and think I would find it harder to see a child in pain than be in it myself - so I have every sympathy. I'm glad people have joined the thread who have children affected and hope between us we can put your mind at rest.

I'll second what RunnerHasbeen says.

The permanent damage comes from the bursae being over-stretched frequently and for long periods of time. These are the sacs containing the synovial fluid which surrounds and cushions the joints. When having an attack or "flare up" the body reacts as though there was a virus attack and the over active immune system causes an increase in the synovial fluid to counter-attack. This causes the bursae to expand to accomodate the extra fluid.

The problem is that the bursae react rather like a balloon, in that, once overstretched, they never quite go back to being as tight as they were originally. The more attacks, the more times they're overstretched, the "baggier" for want of a better term, they become. (But I stress that this is a very gradual process.) This can lead to joints becoming unstable in later life, as, when the synovial fluid levels are normal the sac has become too big and the fluid no longer properly fills it. In this way joints begin to rub together causing the typical arthritis symptoms.

The better the attacks are controlled, and the fewer you have, the less likely you are to suffer any real long term damage. As I said, I'm 51 and have very little permanent damage and the attacks are now very well controlled by medication.

HTH

Ok so it's only when there is swelling that there is a risk for damage, not general achy joints/back with no obvious swelling?

DD2 seems to mainly have aches/pains rather than swelling (though her knee caps were pushed sideways the other week [each knee cap had moved to the farside rather than being central]) so I can be mildly optimistic.

My main trouble is DH has a phobia about joints (won't even eat meat on the bone or carve) and nearly passes out even discussing things like this so it's really hard to talk to him about DD2's problem without talking about her joints .

I think she has only really had a couple of attacks, the rest of the pain might be down to joint/muscle stiffness post attack (she says with fingers crossed).

Yes, it's only when the joints are obviously swollen that you have to be particularly careful. Talking to my aunt before she died, she used to be told to "keep the joint moving" when it was swollen, when she was first diagnosed back in the 1950s! My specialist says to keep swollen joints as immobile as is practically possible until the swelling subsides. I am sure that, together with the advance in immuno-suppressant drugs, is what has kept me as fit and healthy as I am today.

Yes, I have had the same advice - keep the joint immobile while it is still actively swollen (it is usually hot to the touch), then move it gently (in warm water) to get the fluid dispersing. I have had my knee joints drained about 8 times (fluid makes them look like a dolphin head, so not possible to miss) and have no permanent knee damage, not even twinges when running long distances.

I think it is unlikely she will have any permanent damage from what you have described - it sounds like you have done a great job getting treatment and a diagnosis so early.

Ok so keeping her in the pushchair and giving baby ibuprofen was the best thing. Though next thing (please no next time) I will stick her in a nice warm bath after the heat subsides.

Thank you all for you advice and support - you don't know how much this has meant to me and DD2.

My dd had those wheat packs that you heat in the microwave to put over her knees too. Really helped. Good luck x

Good idea thanks I'll see if I can get a peppa pig one