My daughter is only twelve, in 2016 she started complaining of joint pain in her toes and fingers. I went to the GP and got a referral to a peditrician. They examined her and she had blood tests for ESR and CRP, they came back normal. So the pediatrician said there were no problems and discharged her. This joint pain continued, but I was reassured after the visit to the pediatrician and I put it down to growing pains. A few months ago her jaw started to hurt and click and clunk. i thought it would pass, I know it can be a common problem. It got worse, I took her to a doctor, who wasn't concerned and said see a dentist for a mouth guard. Dentist wasn't concerned either. I felt something wasn't right, saw another doctor, and got a referral. She is very healthy, does gymnastics, running etc... Now she has had an MRI. Her disc in her jaw (TMJ) has moved out of place. Her toes show 'effusions', I think this is swelling. She only had her jaw and foot scanned. The MRI says likely diagnosis of seropositive arthropathy (arthritis). Basically this is rheumatoid arthritis in children. I'm waiting for the results of her blood tests and I've been crying all weekend (on my own and I know it doesn't help matters). I am SO worried. Does anyone on here have this condition, can it be controlled? She is so young and I am so scared what the future may hold for her. Any advice you can give would be appreciate so much.
Claire
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Claire1508
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Claire, I am so sad to read this. I feel your distress and worry. The going back and forward to doctors and hitting a brick wall is so frustrating and upsetting when you want answers. This will be tougher on you more than your daughter because you will need to keep strong for you both. This is a superb supportive forum. At this time its quiet. I can assure you that members will see your post in the morning and reply to you. There are more knowledgeable people than myself regarding children with possible RA who can advise and support. Hope this is a bit reassurance until then. Suzie xx
Hiya Claire, welcome, though I'm sorry you've needed to seek us out under such circumstances. It's never good to have to welcome another member, so much more so when it's regarding a child. It must be a very confusing, concerning time & I'm sorry your daughter has been pushed from pillar to post. Unfortunately sometimes it can be a tricky disease to diagnose & more so with children because it's not something we would ordinarily think of as affecting them. That said my niece was also diagnosed around the same age & whilst she had testing times she's now doing well at 33, happily married with two children.
You will gather more information when you attend her diagnostic rheumatology appointment, until then she won't have a firm diagnosis or receive treatment. I would think the next step will be to see her GP, to discuss the results of the blood test, he may be able to help a little more, give some advice on what, if any, pain relief or anti inflammatory she may need, to see her on until she's referred.
If I could just mention a couple of things. You say the report following the MRI says likely diagnosis, I've mentioned that until she has a Rheumy appointment that's what it is, likely, so don't worry. I know that's easy for me to say as you are understandably upset & concerned, but if she is diagnosed there are plenty of options available to Rheumys. Also seropositive arthropathy isn't limited to children, it's the general term for Rheumatoid Arthritis or as some of us prefer to call it Disease (if you happen upon it being called RD instead of RA). RD can either be seropositive or seronegative, depending on if your body has certain antibodies (anti-CCP or anti-cyclic citrullinated peptide), I'm seropositive, it's more common & usually makes it easier to diagnose. Having the antibodies doesn't always mean you'll receive a diagnosis but it's more likely if you have other symptoms. So, effusions, & I know this is a lot to take in but it's the start of quite a learning curve. Joint effusion means that there's fluid around the joint (synovitis is inflammation), she probably complains of stiffness & pain in her toes? They're probably warm to the touch too, another common symptom is redness around the affected joint.
Again, a lot to take in, I'm sorry, but be assured you will receive any extra support & help you need here. We do have members who have had RD since childhood, they will be better placed to give their experience from that perspective. For the moment concentrate on that if she is formally diagnosed there's lots that can be done for her & it's a positive she's active. Once you have the results of the blood tests things will be clearer & plans can be formulated to help her.
Take care & I hope being here will help in some way calm your fears.
I understand your concern, but hope I can offer some reassurance - I was dx age 6, 47 years ago, worked for 22 years, married with 2 children. My cousin's daughter was dx age 2 and she is now finished Uni and a qualified pharmacist. Hope you get some answers.
A few years ago I worked as a scribe for a really lovely girl who had childhood arthritis and was doing her A levels - she had me because although she was quite able to write herself she couldn’t sustain the effort long enough to complete an exam paper, so if the diagnosis turns out to be what you think it is, so find out what help is available to her as she goes on through her education and make sure she takes advantage of all the help available to her.
I can imagine you must be worried sick. It does sound as if your daughter may have jia (juvenile idiopathic arthritis). These are not nice things to have, but these days there is a huge range of treatment and as BoneyC has said you can go on to have a totally normal life. My suggestion is to head over to jia.org.uk where you will find information, support and families in a similar position.
Oh bless you this must be so hard for you but be strong she will come be ok it’s just a long long road to find right medication I am 63 and got it but to be so young But children are strong thinking of you sending her a big big angel hug xxxx
I understand your concern I have Rheumatoid Arthritis and my daughter was diagnosed with Junior Idiopathic Arthritis (the child version of RA) last year at the age of 11, a couple of months before her 12 birthday. NRAS have a brilliant website dedicated to children and there is a JIA forum like this one too.
I can see you have already been sent very helpful and informative posts. I too am sending you and your daughter my support. I just wanted to add, I would suggest you and your daughter keep a daily diary of symptoms, pain, changes, observations, etc as this could be invaluable when she gets her appointment with a Rheumatologist. Thinking of you both.
Hello Claire, firstly to reassure you that with prompt diagnosis and treatment outcomes for children with juvenile arthritis can be good these days with the medications available. I myself had it since the age of 10 (some 30 years ago) and even with the lack of treatment then I went onto uni, got married, had children, have been able to work (albeit not in any jobs where I have to stand on my feet all day). My daughter was diagnosed with JIA at age 2 (now 6) and on methotrexate medication and under care of rheumatologist she is doing well overall. Sadly some things haven't changed in the past 30 years - A lack of awareness amongst the public and even GP and some health professionals- also diagnosis still remains by process of elimination. My daughter is RF negative and all her bloods came back normal. The bloods can be an indicator but should not be the sole mechanism for diagnosis. You need to ask for urgent referral to a paediatric rheumatologist at one of the specialist centre's (e.g in South East GOSH or evalina), also I think there are ones in Southampton, Bristol, Birmingham. They can then work out a treatment plan to get the JIA under control to prevent further joint damage and manage her pain. Wishing you all the best (our daughter's jia journey is documented on our family blog if you want to know more) look after yourself too - it is a rollercoaster of emotions. Also VERY IMPORTANT AND URGENT get her eyes checked for uveitis. Something common in children with arthritis but not always well known about. If she has uveitis it needs to be treated quickly.
Thankyou I will look at your blog. I'm in Essex do you know what would be the nearest centre to take her? We have been referred to Addenbrookes in Cambridge, is this a good place? x
That’s where I go and it seems to be ok but I’ve got no experience of anywhere else. I was fast tracked and given a three month course of steroids then started on hydroxychloroquine. I go for a check up every year now.
Can’t say how it is for young people though but generally it’s a good place. I’ve never seen my actual consultant but I did see the same doctor this year as I saw last year which is probably a record for a big teaching hospital.
None of the clinics I’ve been to have been packed out although - I do know they are really busy - and I’m always seen shortly after I arrive unlike when I used to wait for what seemed like hours at their endocrology clinic when I was being treated for Graves’ disease a few years ago. Good luck with it all.
So sorry to see this post regarding your daughter. As others her have already said there is a lot of help out there for you and your daughter. Wishing you both the very best in your quest for some answers and relief for her.
All members are here for you so don’t hesitate to pop in any time, there’s usually someone to chat to.
So sorry and must be a big worry for you but as others have said medication is getting better all the time.I know that is of little comfort at the moment but once they have a plan in place for your daughter i hope things will look a bit brighter please let us know how you and you daughter are doing best wishes to you's and i hope things start to look up for you x
I‘m sorry to hear about that.. I got diagnosed with RA when I was 17. I think for people that get diagnosed at a young age the mental support concerning every day life and the future is really important, or at least that‘s my case. My advice to you would be to stay emotionally close to her and build a relationship in which she can openly talk to you about her pain, any effects or side effects of the medications and any other worries she might have. That‘s something that was always really difficult for me to do because I knew that my mom was suffering too and I felt like it was my fault. So be strong for her and with her! As many other people said in their replies, there are a lot of medications so I‘m sure she‘ll find something that will work for her and of course there are also a lot of alternative treatments and changes in lifestyle that can help a lot! I wish you two all the best and feel free to contact me if you have any questions or want to talk about something.
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