A paediatric rheumatologist explains that it is important for young people to see a GP if their painful symptoms continue.
A paediatric rheumatologist explains that it is important for young people to see a GP if their painful symptoms continue.
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When young people develop any symptoms, I think of joint pain… the first thing I think is to remember that arthritis is only one of many causes of joint pain in young people and not to imagine that if you've got a sore knee it necessarily is arthritis but it is important if it continues on, isn't related to any injury etc to get it checked out by a doctor. Now some young people will not want to complain of pain or symptoms and just put up with it. But if it is continuing it is wise to see a doctor and go to the GP and ask them to check them over to see if there is any concern. Arthritis is diagnosed by an examination, there are no blood tests that diagnose arthritis. It helps decide which type of arthritis but arthritis is diagnosed by physical examination and taking the story from the young person. Now that takes skill and we're hopefully improving awareness amongst doctors and health professionals about how to examine young people's joints and take good histories so that they can decide whether somebody's got arthritis or not, but it is important that they seek advice regarding it.
Recognising that somebody has arthritis can be difficult for GPs. People may describe non-specific symptoms like aches and pains which do not obviously point to a particular health condition. Also, arthritis in young people is rarer than it is in adults so GPs may not have looked after a young person with the condition before. As a result, people with symptoms, their parents and healthcare professionals may be puzzled as to what is going on. It can take a while for people to see a pattern or make connections between different symptoms around the body. It may feel like a process of elimination while other explanations are ruled out.
Some families ask for medical advice early on and sometimes doctors recognise the symptoms quickly. For example, David Z visited a GP who had just returned from a conference about ankylosing spondylitis and immediately recognised the symptoms. Doctors may order blood tests before they refer people to a rheumatologist, which may give clues but not a clear answer as to whether the problem is arthritis.
A paediatric rheumatologist explains that diagnosing and treating arthritis quickly can prevent long-term damage to developing bones and joints.
A paediatric rheumatologist explains that diagnosing and treating arthritis quickly can prevent long-term damage to developing bones and joints.
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I think the, one of the problems both from a patient point of view and from a professional point of view or a rheumatologist point of view is the lack of awareness that arthritis can affect young people and that they are not believed and they're told they're growing pains and there's a delay in the diagnosis because of the awareness that young people don't get arthritis and the sites like this will hopefully raise awareness that young people do get arthritis and it is very important for them to be treated early. One of the big differences with juvenile arthritis and adult arthritis is juvenile arthritis is affecting a growing skeleton and the effects of arthritis are different because it is affect….it can affect the growth of that joint and then once that joint is, you know damaged or whatever by the arthritis then the growth is also affected and that has implications then long term. So we want to see children and young people as early as possible in order to prevent any of their growth being affected as well as any of the bones being affected. And that is different to an adult arthritis because the joints are fully grown and growth isn't affected.
Paul's daughter, Elizabeth, was having difficulties walking down the stairs. He made an appointment with the GP. The GP referred Elizabeth to see a rheumatologist the next day.
Paul's daughter, Elizabeth, was having difficulties walking down the stairs. He made an appointment with the GP. The GP referred Elizabeth to see a rheumatologist the next day.
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When she was 18 months old she started coming downstairs walking and all that and we noticed that she started hanging onto the banisters to come down the stairs and so it was something to do with balance. We thought it was an ear infection because she had a bit of a sniff and cold and a bit of a sort of a virus at the time. And so it didn’t clear up and she still hung onto the banisters so we actually went down to the doctor and no disrespect to our GP, but luckily he was on holiday and we had a stand-in locum who was paediatric trained.
And after the first consultation he referred her to a super-fast clinic, direct to the local area consultant rheumatology and the next day we saw the consultant NHS. And that consultant in 1993 is still the same consultant seeing Elizabeth what 17 years later with the same physiotherapist and the same rheumatology team.
So from the outset that was our experience of the NHS. So we’ll go on from there.
That’s quite remarkable then so was the diagnosis quite quick?
The diagnosis was after a few blood tests and other things I can’t remember, was literally you know within a week I would think, or on that day it could be because we were obviously shell shocked
Getting a diagnosis can take a long time. People may put the early symptoms down to something less serious, such as growing pains, loose ligaments, overdoing it at the gym, or spending too long playing on games consoles. Parents may not realise what's happening, if young people keep quiet about their early symptoms.
Neither Charlotte Z's parents, Robert and Karen, nor the GP suspected she had a medical condition when her symptoms first appeared. Charlotte Z hid the pain she was in because she was worried she would have to stop boxing.
Neither Charlotte Z's parents, Robert and Karen, nor the GP suspected she had a medical condition when her symptoms first appeared. Charlotte Z hid the pain she was in because she was worried she would have to stop boxing.
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Karen' I think it was back in February. Charlotte’s always complained of sore knees and we took her to the doctors when she was younger, seven but they always said they were growing pains, nothing was ever, never looked into or anything. And now, when we look back, we think maybe that was the beginning of it but it really became an issue in February. Charlotte used to go to boarding school. She came home ill and she had about a week off and then she went back because she was perfectly healthy before that week and she started complaining of joints hurting, mostly her thumbs started to ache.
But we just put that down, she was doing GCSEs at the time, a lot of work and she used to box and we just put it down to all things that connected with that. Then wrists were hurting and we just, once again said it was all the jolting from the boxing and her feet were sore and we put that down to she needed new shoes. Never once connected that she had an illness or anything.
Anyway, it got to the point where her thumbs were so sore we ended up taking her to the doctors and he, once again, said it was loose ligaments and it was normal in a child of her age. Again, about I think about two weeks later, she still she couldn’t write.
But like I say, the symptoms were just normal. Nothing out of the, that you’d put down to arthritis. Never once clicked.
Robert' However, when she was boxing, she was complaining of how much it hurt her wrists and ankles and stuff like that and getting injured but the injuries weren’t sort of consistent with the boxing making it worse more but she used to just carry on with the boxing and just associated with the normal pain from boxing but it wasn’t.
Karen' Yeah.
Robert' Her and her energies weren’t sort of getting any better. You know.
Karen' But she didn’t complain too much because she wanted to, she loved it, enjoyed her boxing and things so Charlotte never, didn’t tell us the full extent of what pain she was in because she thought we’d stop her from boxing. She wanted to carry on as normal as she could. So, yeah.
Sometimes doctors explored other serious medical causes first, such as a gout, meningitis, leukaemia or lupus which may have similar non-specific symptoms. Most types of arthritis cannot be detected using blood tests and this can make a diagnosis difficult. A diagnosis is made by carefully asking questions about a person's health history and a physical examination.
David Z has Ankylosing Spondylitis (AS). The doctor originally thought he had a slipped disc.
David Z has Ankylosing Spondylitis (AS). The doctor originally thought he had a slipped disc.
Age at interview: 21
Sex: Male
Age at diagnosis: 21
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Up to the point of when I was eighteen, nineteen, I was a completely normal teenager. I was exercising. I used to run quite a lot and it wasn’t until then that I started to notice some symptoms of something I didn’t realise or didn’t know what it was, yeah. It started off with some neck pain, actually, and it started to get really stiff but well, I just thought it was growing pains or whatever, so I just ignored it. And then a couple of months later from that, it started to move so including my neck it also moved to the bottom of the spine. That would get quite stiff and over time, hands and feet and it was at that point I realised that was not really normal for growing pains. So I went to the doctor and they did the initial test for ankylosing spondylitis because automatically it triggered something and they did blood tests to check for inflammation and an x-ray to see if there was any fusion that’s characterised with ankylosing spondylitis.
And they were both they were both negative for any signs so they thought, okay, maybe it is just growing pains. So they sent me away and just to see how it goes and if it got any worse, come back and it didn’t get any better. In fact, it got quite worse, not particularly that it moved anywhere but it just intensified and to the point where it was actually starting to interfere. I couldn’t cope normally. I couldn’t function normally and so I went back and because they’d already done the test for AS they weren’t as keen to go down that route. So they started to go down different routes, maybe it was nerve pain, maybe it was something else that they hadn’t realised yet. So, they were they sent me to a consultant at a hospital and they did various MRI scans to see if I’d maybe slipped a disc in my back that could have triggered pain to other parts of the body.
If young people report pain when there are no physical signs (such as swelling) then doctors or parents may wonder if the pain is real. Lucy’s mum was told by the doctor that Lucy got into a ‘bad habit’ of saying she had neck pain when her mum was driving. Caitriona’s mum was told that she was “play acting”. Kyrun’s mum remembers Kyrun getting angry and standing up for himself in hospital when doctors said that he was pretending to be in pain.
Occasionally a parent may question whether their son or daughter’s symptoms are real.
Sonia's mum wondered if Sonia's symptoms were psychological. Sonia felt that her doctors may have wondered this too. For her the pain she felt was very real.
Sonia's mum wondered if Sonia's symptoms were psychological. Sonia felt that her doctors may have wondered this too. For her the pain she felt was very real.
Age at interview: 22
Sex: Female
Age at diagnosis: 20
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I never thought that I was making it up. My mum did. For a bit she was not convinced but she was sort of you know, she’d drop it into the conversation, “You don’t think it might be just psychological?” “No Mum, like you know you can prod it and it hurts. It’s not like it’s just this pain that’s just there. It’s attached to something. I know that these bits of my spine don’t hurt when you press them but these bits do. I don’t think that’s psychological.” But she thought for a while it was. And I began to suspect that maybe the doctors thought that too because they just didn’t seem to know what to do. Yeah.
It is common for people to see a GP several times before they are referred to a rheumatologist. Sometimes people see several different GPs before being referred, either because they have deliberately asked for a second opinion or by chance. Sometimes this helps and the person sees a GP who recognises the symptoms. Sarah’s GP was away so she saw a locum GP who referred her instantly to a rheumatologist.
David Z changed GP to get a second opinion. His new GP who had just returned from a big meeting about ankylosing spondylitis. He felt lucky to meet a GP with special knowledge about the condition and was soon referred to a rheumatologist and diagnosed.
David Z changed GP to get a second opinion. His new GP who had just returned from a big meeting about ankylosing spondylitis. He felt lucky to meet a GP with special knowledge about the condition and was soon referred to a rheumatologist and diagnosed.
Age at interview: 21
Sex: Male
Age at diagnosis: 21
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So I was kind of where I started but with just this same amount of pain, which was quite annoying, but, so at that point, I decided maybe I should go to a different doctor because they they’ve kind of got an idea of what they think it is already. So I decided to move GPs and the first appointment at the new GP I told them all my symptoms, how long they’d last and quite fortunately, he’d just come back from a ankylosing spondylitis seminar and everything that I told him he thought was absolutely characteristic. I thought that was quite lucky in a way and he gave me a consultation request form to go to hospital to see the rheumatology department this time. And they were quite sure that they did tests. The blood tests were still negative, which was quite frustrating, but when they started to look at different aspects of the MRI scans and the new x-rays they could start to see signs and that was when I started to get a diagnosis of, it wasn’t originally ankylosing spondylitis but it was the more general term of spondyloarthropathy, which includes a lot of different inflammatory arthritis and they went on from there. And they just started, they started to treat me as if I did have AS because the treatment was the same for ankylosing spondylitis.
When GPs are not sure what is wrong they may refer people to consultants who do not specialise in rheumatology, such as paediatricians or paediatric orthopaedic surgeons. These consultants may then refer the person to a rheumatologist.
Occasionally people may go straight to a hospital’s accident and emergency (A&E) department without seeing a GP first. They may have x-rays to see if bones are broken. Stacy took her son to A&E because she knew there was “something really not right” and felt the symptoms were too serious for a GP. Tom went to A&E with very swollen knees but the hospital was so busy that he returned the next day. In most cases people did not get a diagnosis of arthritis in A&E and went back to their GP still unsure what was wrong, but in Lu’s case a nurse in A&E mentioned it could be arthritis. 48536
Lu went to A&E after falling down the stairs. Her finger was swollen but not broken. The nurse suggested that she may have arthritis. Lu went to see her GP and was quickly referred to a rheumatologist.
Lu went to A&E after falling down the stairs. Her finger was swollen but not broken. The nurse suggested that she may have arthritis. Lu went to see her GP and was quickly referred to a rheumatologist.
Age at interview: 26
Sex: Female
Age at diagnosis: 13
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I was really, really sporty when I was a youngster which is apparently how my arthritis kind of kept at bay and then when I was 13 years old I was running out of my house going to swimming club, fell down the stairs and bashed my fingers which wasn’t you know, you know it was quite typical for me I was always sort of you know doing one thing or another. Had numerous sports injuries. And then I noticed that the swelling just didn’t seem to go down. So I got taken into A&E by my lovely parents who, this was probably about the fourth trip in a month, ‘cos I was sort of dislocating shoulders or you know breaking feet or something like that, really randomly.
So yeah I got taken to A&E and had x-rays and they noticed that there wasn’t sort of any potential breakages there, and I remember the nurse saying to my Mum, “There’s like a one in a million chance that it could be arthritis.” And my Mum for some reason just kind of clocked onto that. And when the swelling didn’t go down a month later I got taken to my GP who then sent me off for a load, you know a load of blood tests, and just to sort of get rid of any you know possibilities and I remember sitting there thinking, “Oh my goodness, what am I being tested for?” Because there were some really horrible diseases. And then going back and finding out that my sort of rheumatoid factor had come back positive.
And the process from there was just really quick. I was sort of out of the GP surgery into a local hospital and then because the local hospital didn’t really specialise for youngsters I got moved into one of the sort of the leading hospitals in the world for sort of treatment and analysis and tests and diagnosis really.
Kerrie went to A&E twice before she saw a GP. She then saw her GP several times before he sent away for blood tests and referred her to a rheumatologist.
Kerrie went to A&E twice before she saw a GP. She then saw her GP several times before he sent away for blood tests and referred her to a rheumatologist.
Age at interview: 25
Sex: Female
Age at diagnosis: 22
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Actually, I ended up in A&E a couple of times, like I say, with the swollen fingers. I was convinced that I’d damaged broken my fingers maybe and not realised. And again, you know, I was told to go away, that they couldn’t see anything. So I did eventually, go to my GP. I think I went three or four times before I was actually diagnosed. Again I was turned away, just saying that it was a virus, that there was nothing really that they could do but I don’t think anyone suspected arthritis or even questioned me along those lines, you know. There was no history of it in my family at all, so there was no real reason to believe that I would have that until, obviously, the blood test confirmed that.
You didn’t have any x-rays when you went to A&E?
I did have an x-ray I think, the second time I went, of my wrist.
But again, because, obviously, I was in the very initial stages, nothing showed up. I don’t really, I think they were either looking for a break or a fracture as opposed to what was actually there, which was the arthritis. So nothing showed up.
Okay then and so did you go to your GP after you went to A&E?
Yeah.
Oh, you went to A&E twice before you saw your GP?
Yeah.
And could you tell me what happened there?
When I went to the GP again, the first time I meant I described the symptoms to her that I was feeling very under the weather, couldn’t quite put my finger on what it was that was wrong with me. I was getting headaches, feeling so tired all the time, quite emotional, and just this general kind of aching in my body in all different types of joints. And she simply said that it was, it sounded like a virus and something that I had picked up. I’m just finished university and gone straight into a job, so she kind of thought that maybe the stress and emotional impact was just, you know, almost being run down, which I accepted, went away, struggled on but, as it didn’t get better, I went back again and that’s when I was referred for blood tests, and which showed up straight away that I had arthritis, rheumatoid arthritis.
So was it the GP that referred you or did you ask to be referred?
The GP referred me straight away to see a rheumatologist. And it all kind of happened very quickly from there.
Not all referrals are quick. People may have to wait several weeks before they see a rheumatologist. During this time a person’s symptoms may get worse and he or she may end up in A&E.
Charlotte Z went to A&E because she was in so much pain and her painkillers weren't helping. The A&E doctors gave Charlotte Z different painkillers and said they could not do anything else until she saw her rheumatologist.
Charlotte Z went to A&E because she was in so much pain and her painkillers weren't helping. The A&E doctors gave Charlotte Z different painkillers and said they could not do anything else until she saw her rheumatologist.
Age at interview: 17
Sex: Female
Age at diagnosis: 16
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I saw the GP, had the blood tests, got the results, had the x-rays. The x-rays came back fine I think though.
Okay.
Did they? Yeah the x-rays came back fine. Which was why it was all really bizarre. But the pain relief that the GP, the female GP had prescribed me just wasn’t doing anything, and that’s why I ended up down at A&E ‘cos I just, it was just kind of like a last resort, and we just didn’t, I didn’t know what to do anymore. We didn’t know what was wrong with me and it was just, you expect to go to the hospital and they help you. That’s where you go when you’re not feeling right so that’s what we did but they’d, they gave me some more pain relief, but it just basically knocked me out. So at least I got some sleep, but yeah.
Okay so at what point where you referred to the rheumatologist? How did that happen?
The same GP who ordered the blood tests and the x-rays at the same time she referred me to the rheumatologist. But I had to wait quite a while for the appointment to come through.
Oh I see. I see. So between seeing the rheumatologist and seeing the female GP there was a space of time that you went to A&E?
Mm.
What was it like being in A&E?
Not very helpful. I mean they, well they asked us what was wrong, well what, “I’m in pain,” that’s like all I could say. “I’m achy” I kept saying. And then I couldn’t even like walk properly towards the room or anything. And then they , they put us through to like this duty doctor or something, and she just, she examined me and she, she agreed with the GP that there was something like weird going on, but they couldn’t do anything and they knew that ‘cos they knew I had this referral to the rheumatologist. They just kept saying, “You’re gonna have to wait for the referral. Until then we can just give you pain relief.” The pain relief medicine wasn’t doing anything for me.
Did they change the medication? Because you went several times didn’t you?
Yeah I think I started on naproxen, went to co-codamol, diclofenac, ibuprofen, dihydrocodeine, yeah everything.
And none of them worked?
None of them worked.
Occasionally people we spoke to ended up in hospital before they were diagnosed because their symptoms were so severe, and they received a diagnosis during their stay or shortly afterwards. Sometimes people stayed in hospital because symptoms had gone on for too long and doctors wanted to get to the bottom of the problem. Some younger people preferred it if parents slept in the hospital with them, helped them dress, wash and use the toilet.
Kyrun was treated for meningitis but was later told he had systemic JIA. He said he felt 'breathless, feverish and tired'.
Kyrun was treated for meningitis but was later told he had systemic JIA. He said he felt 'breathless, feverish and tired'.
Age at interview: 16
Sex: Male
Age at diagnosis: 6
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It was a rough patch getting diagnosed ‘cos I was so active like played football for county and the way I got diagnosed was I picked up a groin strain from playing a county match and I kept limping after about two weeks solid after, which it shouldn’t happen with groin strain.
So Mum said go straight to the Duty Doctors, like the emergency doctors and then they said, well I’ve had meningitis so I had to be rushed in with like all that meningitis treatment which was for about three days and none of like the signs didn’t improve. So they done lots more other tests from MRI scans to X-rays to the, I think, I’ve forgot what it’s called but it’s like the put dye into the veins and see what’s going on with like veins and arteries and stuff.
And then about two, three weeks later, I was still in hospital, but a particular doctor said I was just faking and I just didn’t want to go to school. So they pretty much forced me to go back home. And then we got a phone call about three days later saying come back in straightaway because there’s some signs on, that the blood tests says that you’ve got some infection, and it can be quite dangerous.
So I got rushed back in. They cleared the infection and then they done some more like back up tests to see if everything was okay. And then they picked up that I have Systemic Arthritis.
Wow. Well thank you for that. That was very eloquent. So could you tell me what kind of symptoms you experience?
Well I had, because I had the groin strain as well, so it was more organly, and like my organs felt so tired, my lungs were like, I was really like short of breathless, but it was also to do with all the weakness in my muscles and around my joints. Which they just thought, because of the groin strain I’ve done like too much and it needs like time to catch up.
And I also had a really like visible rash, which they say is like similar to the meningitis rash but it’s, if you look closely it’s completely different. Hot and cold fevers. Really really raised temperatures. And that’s really about it. Yeah. Due to symptoms and stuff.
Because of the increase in the number of paediatric and adolescent rheumatology specialists hospital admissions are much rarer nowadays and most young people are assessed as outpatients (patients who do not need to stay in hospital overnight).
Parents may pay to see a doctor privately in order to reach a diagnosis more quickly. Anna’s GP recommended that she saw a rheumatologist but she had to wait 4 months because the rheumatologist was so busy. When Anna’s parents paid privately she only had to wait a few days and was diagnosed very quickly. But in other cases people went back to the NHS.
Stacey did not agree with the A&E doctors who said that Bradley's groin pain was caused by a pulled muscle. They went to see private doctors who arranged for Bradley to stay in a NHS hospital for a week for tests, where he was diagnosed.
Stacey did not agree with the A&E doctors who said that Bradley's groin pain was caused by a pulled muscle. They went to see private doctors who arranged for Bradley to stay in a NHS hospital for a week for tests, where he was diagnosed.
Age at interview: 40
Sex: Female
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I mean the first time we went I think, I'm trying to think back, we were there for a while and they felt his leg and doing all this poking around and I don't even think he had an x-ray that time. It was just, "No it's not a hernia," they were looking for and, "Oh it's just a pulled muscle, go away, take some Nurofen (ibuprofen), he'll be fine." But the second time when we went he had, he did have an x-ray, they call it a Frog x-ray where he had to open his legs out to take an x-ray of the groin and again I don't think they really knew. It was just, "Oh yes, he's pulled a muscle,' sent him out on crutches and I just thought, 'You know what, this is not a pulled muscle, this is more…' In fact I think it was twice we went because now I recall that it was after that second time that I said, "This is, we've got to go further, we've got to go privately because we need, he needs further tests."
So we then went to see a doctor privately because we just, we had to know, we couldn't wait any longer and watch him be in pain. Which is what we did and after various tests and being told that Bradley needed an operation we then ended up back in, through NHS where they kept him in actually for a week. More tests and eventually he was referred to hospital which is where, again more tests and then he was diagnosed that he has JIA and also enthesitis.
Occasionally people would pay to see practitioners who were not medical doctors. Zoe had bunions on her big toes and saw a podiatrist. He made special insoles for her but she did not feel that they helped. David Z and Sonia were treated by chiropractors and osteopaths when they had neck and back problems.
Parents who had arthritis themselves may pick up on the symptoms before the GP and suggest it as a diagnosis.
Karen has rheumatoid arthritis. At first she did not suspect that her daughter, Jenna, had arthritis but she soon noticed similarities between Jenna’s symptoms and her own. Karen had to persuade a GP and a paediatrician to refer Jenna to a rheumatologist.
Karen has rheumatoid arthritis. At first she did not suspect that her daughter, Jenna, had arthritis but she soon noticed similarities between Jenna’s symptoms and her own. Karen had to persuade a GP and a paediatrician to refer Jenna to a rheumatologist.
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So I took her to the doctors that day. He had a look at it, he said he couldn’t see anything significantly wrong with it, so again he just said, “If you’ve got, I’m sure it’ll go on its own. If you’ve any more problems and you’re concerned come back.” At that point I did mention to him the fact that I had arthritis and I could see some similarities but he said no, unless she’d had a severe illness when she was young, very, very unlikely that she would have arthritis like me just because I had it, didn’t mean that it would run in the family and she would have it. It’s not something that’s hereditary. So he just said, “Go away and come back if you’ve any concerns.” Then maybe a month later, she, I noticed her writing and she was holding her pen awkwardly and she had her, her index finger pointed straight and I said to her, “Why, why are you holding your pencil like that? Why are you holding your finger straight?” and she said, “Because I can’t bend it,” and I said, “What do you mean you can’t bend it?” and she said, “It just won’t bend.” So that was when the alarm bells really did ring then and so I looked at her hands and I could see that her, some of her, her joints were slightly swollen on her thumbs.
So I really thought, “I think she must have arthritis.” I really think that was sort of evidence of it. So I took her back to the doctors. He then, after some pressuring, sent her for blood tests, he then referred her after the blood tests to the local hospital to a consultant paediatrician and the consultant paediatrician did his different tests, like blood tests. He then brought be back for the results, said there was nothing conclusive, he couldn’t find any reason for the problems with her joints. He said, he said she wasn’t rheumatoid factor positive and therefore he couldn’t really explain it so I then pressed him and said, “Well if you can’t explain it, could it be arthritis?”
Again he said very unlikely but in the absence of any other explanation for the problems with her joints he would refer her to [hospital] to see a paediatrician rheumatologist and let them investigate it further. So we then went to [hospital] and they did numerous tests, they did an MRI of her wrists, x-rays of her hands and blood tests and physical examinations and after all those tests it was finally the wrists that showed it mainly I think which convinced them, and some of her finger joints and they said, “Yes it’s polyarticular JIA,” and they confirmed it. They said it wasn’t an obvious form of it. They said, you know, it wasn’t something that screamed out arthritis when they first saw her.
Tina met the parent of a young boy with arthritis and recognised that her daughter had similar symptoms.
Both parents and young people described a range of emotions when they talked about their wait for a diagnosis. Some felt afraid, upset and confused about what was happening. Others felt that their doctor was not listening to them and found this frustrating. People were also frustrated when they felt that doctors were too slow to make a diagnosis. Parents sometimes felt helpless because they could not do anything to help their son or daughter with the pain. Some described how they had to be pushy in order to get further tests or be referred to specialists. Zoe felt like she was being “passed around from doctor to doctor” before her diagnosis. At one point Karen thought that she might be called a “neurotic parent” because of how often she was in A&E with her daughter.
Whilst waiting for a diagnosis, Mary was very afraid for her daughter and frustrated because she did not think doctors were telling her enough.
Whilst waiting for a diagnosis, Mary was very afraid for her daughter and frustrated because she did not think doctors were telling her enough.
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And I thought it was a virus. So then from the October to the following April she was a bit off all the time, she wasn't quite herself and then one particular night in April we heard her screaming from the bedroom next door. Raring temperature, couldn't go near her, couldn't touch her, wondering what the hell was wrong. Got her into hospital, we were in the hospital five weeks before they actually diagnosed her. Luckily the doctor at the time he'd had it as a child and recognised the symptoms and we went over to the rheumatology hospital and gave her 40mg of steroids, a blood transfusion and the day after, she got up and started moving around. But five weeks previous to that nothing, couldn't move, couldn't do anything. It's quite scary in the beginning because at one point she actually went so limp in my arms I thought she was going to die; it was horrible. And I think it's the unknown so for me if they could come up with something that, you know, the diagnosis that's earlier rather than; we were told it's normally twelve to thirteen weeks so we were lucky and the fact that, but still that, that five to six weeks of, of nothingness, of not knowing, people coming at you saying, "We think it's Kawasaki syndrome, we think it's this, we think it's that." It's not what we think it's what, right we need an answer. Please somebody tell me why the hell is my child in so much pain and you can't do anything. You're not doing anything to make her better. So for me that, that was the hardest part, the very beginning whereas the sort of like, it takes so long to diagnose.
Once a doctor recognises the symptoms and makes a referral to a rheumatologist people may have further tests (see
‘Experiences of tests’), but a diagnosis is primarily made on careful history taking and examination. A specially trained rheumatologist can diagnose people quickly and begin treatment.
A paediatric rheumatologist explains how a diagnosis is made using physical examinations and taking a medical history.
A paediatric rheumatologist explains how a diagnosis is made using physical examinations and taking a medical history.
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OK so when a young person sees a consultant – now they, in paediatric rheumatology, so if they're under sixteen and in some areas under eighteen they would go to a paediatric rheumatologist and they're…not as many of those in the country as adult rheumatologists. So the experience may differ depending on whether you go to your paediatric centre or an adult centre and a paediatric rheumatologist… I'll speak from my own experiences that they will, certainly in paediatric rheumatology, they may be seen either by the consultant or by one of the trainees but certainly in paediatrics they will always see the consultant eventually within that consultation. A history will be taken and that's when questions will be asked to work out the cause of arthritis or to diagnose arthritis and find out what, how it's affecting the young person etc and then they will be physically examined and that's examining the joints but examining the rest of the body – listening to heart and checking the tummy and feeling for any glands, all of which tie into working out which type of arthritis it is and getting the diagnosis correct at the end. So sitting down talking and getting to know the young person, finding out how the symptoms etc are affecting them, taking their medications they're on, what they've tried, if they've tried any complimentary medicines; if there's a family history of any arthritis etc and then examination. And as I say usually at the end, if there is arthritis the doctor will be able to say there is arthritis, they won't be able to say what sort of arthritis and that's…and further tests will be necessary .
Last reviewed November 2018.
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