suspected JIA

lifesupsanddowns
lifesupsanddowns Member Posts: 21
edited 25. Oct 2012, 06:41 in My Child Has Arthritis
Hello everyone. i was hoping someone would read my post and respond if they have any information that may help.

At beginging of june my 14 yr daughter complained that her hips were hurting. in the past she has at times complained that her knees hurt. After a week she was still complaining so i took her to the gp. he prescribed painkillers and sent her for a blood test. i have joint problems and her paternal grandfather has rheumatiod arthritis as does his twin. he told us to come back in 4 weeks if she was no better.

A week later she was no better and could hardly move and was now getting pain in her knee so i took her to A+E. they xrayed her found no problems and sent her home with crutches. They prescribed her with ibprofen.

we went back to the gp when her symptoms hadnt altered he checked her blood results her RF was slighty raised and he said she was showing signs of JIA. he refered her for a MRI scan and to have more bloods taken on the day of the scan.

Whilst waiting for her MRI scan she got a coldsore that infected the whole of her mouth and the pain increased to such a degree that she could barely put 1 leg infront of the other. I took her to hospital and they admited her straight away as she was dehydrated and by now the pain and stiffness was in her hips,knees,ankles hands and her jaw ached and she had a lump on the side of her jaw.

Whilst in hospital she saw various doctors and had tests but diagnosis was mixed. some said JIA others didnt know. They put her on 800mg of ibruprofen 3x day plus painkillers and refered her to bch to see rhematologist. This was middle of August.

At the end of august she had an appointment with the consultant (pediatric) She gave her a thorough examination and in her opinion she was showing signs and symptons of JIA. She stated that the joints she thinks are affected by swelling and stiffness are her toes,balls of her feet, right ankle. knees hips and right hand especially the middle joints of her fingers. we were told to await the Rheumatologist appointment and she has discharged her.

We saw the rhuematologist in September, and she stated that although she is showing the signs and symptons she is not convinced that it is JIA. She said that when forced her joints go where they should when she helps them. The MRI of her hips was clear. She wants to see her again in November. So we are now confused with what is happening to her.

She still swells and is stiff most days. too much activity of any sort causes extreme pain and stiffness the following days. She is now on 800mg ibprofen 3 xdaily tramadol for pain anti inflammatory cream for joints to reduce the swelling, wears a splint on her hands at school. She is in year 11 at school so there is a lot of writing and this makes her hands swell and extremely painful. she is very tired and irratable and crys a lot in general. this is so not like her.

one thing that i have noticed is that the run up to her periods, the week whilst on her period and a least a few days after are much worse for both the pain and swelling but not so much the stiffness. Has anyone noticed anything similar. we are beginning to think that the doctors think she is making it up but she has been in virtual constant pain for over 4 mths and it dont seem to be getting better.

Any advice would be welcome and sorry for the extra long post x

Comments

  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello lifesupsanddowns and welcome to the forum. I’m not the parent of a child with arthritis but I’ve had it (RA) myself since I was 15.

    To take the last bit first – I’m sure they don’t think she’s making it up but it can be very difficult to diagnose and it can take a long time. In your daughter’s case, she seems to have started with problems in her larger joints and I don’t think this is usual with RA or JIA. Mine started in my fingers then moved into my feet and I think this is a more normal route. However, you do mention a history of auto-immune diseases in the family.

    I can relate to the ‘period pain’, or at least I could in the years when I had them. Virtually anything that raised my temperature had the same effect.

    As for writing, I used to do rough work left-handed to ‘spare’ my right. Now, though, there is voice software that can be bought for the computer. It isn’t foolproof but many use it effectively.

    I hope some other parents will be along soon.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    thank you stickywicket for your reply.

    Its so frustrating to see your child in pain and 1 doctor to say 1 thing and another to say something different. Im sure we will get there in the end. I have had joint problems since i was 7 and although i have seen a rheumatolgist many times( every joint in my body is affected bar my elbows) i dont have RA.
    My father in law it affects mainly his hands and 1 knee his came on when he was about 55.

    With monitoring her pain levels it does appear to be worse during her monthly cycle and if she is tired and or ill. I was just wondering if maybe it was hormonal as oppose to arthritis. But you say your pain was worse when you had them so maybe there is a link there.

    All i want is my daughter to be told what is causing the pain and hopefully treated so that we can reduce the amount of pain and swelling. Her School are going to supply her with a laptop to help with the writing whilst at school so that should reduce the swelling in her right hand.

    thank you

    Also if anyone else has similar experience it would be great to hear from you.
  • kat
    kat Member Posts: 23
    edited 30. Nov -1, 00:00
    Hi, i was the same when i first started with Problems in my hips and it took 4 years to diagnose me with JIA. I had all the blood test, x-rays and MRI's but they couldnt understand what was causing all this pain so i was told to go back to the hosp every couple of months while still taking painkillers and ibuprofen. After seeing a few different doctors they finally diagnosed me with JIA and hypermobility which is also very painful and can be hard to tell the difference between the 2 except there is no flammation with hypermobilty.

    I would keep on at the doctor as they discharged me for a year or so when they didnt know what was wrong and the pain had got better but i think if i could of had an explation earlier and put on the right meds i would have had a few betters years while at school as its stressful enough with exams without the added pressure of pain and tiredness which i experienced.

    Hope this might help and i hope it all gets sorted soon for your daughter. X
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    Thank you kat for your reply.

    Hypermobility is that the same as being double jointed. when she was 2 and not walking she was diagnosed as being double jointed, i was told to buy her some boots to support her ankles and she would start walking which she did.

    When she was born,she was born with her right arm and shoulder behind her back and they thought she had broken her arm, which she hadnt she was a C section baby. When i was pregnant with her i was attacking her white blood cells they said she had an antibody in her blood apparently the same as her dad. That my body didnt like and i was fighting it. Luckily it settled down and apart from the arm and ankles shes been fine no problems. She has wore a mouth brace for 4 years as her jaw wasnt straight and she had quite a large overbite and very tiny teeth.

    Im not sure if any of these things are connected or just coincidences. she is my 3rd child, all born by c sections and the only 1 with any joint problems. She has always had a poor appetite and doesnt drink enough. she has quite long limbs especially her fingers and toes. although she is quite short for her age.
  • kat
    kat Member Posts: 23
    edited 30. Nov -1, 00:00
    Yeah hypermobility is the same as being double jointed and it also stunts growth as my family are all 5 ft 10ish and I'm only 5 ft 6.

    I don't know about the other things you mentioned but is your daughters iron levels high as that can be a indication of arthritis so my leaflet from the hosp says. I also have really flat feet and this can cause pressure on joints too.

    Kat xx
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    thank u kat .

    i dont know about her iron levels. i know a lot of the blood test they have done have raised which according to doctor shows inflammation in her body.

    As for stunting growth she is only 5ft 1. her sister is 5ft 5 and brother is 5ft 11 although i am only 5ft 2. so im not exactly tall.
  • Loulou11
    Loulou11 Member Posts: 86
    edited 30. Nov -1, 00:00
    i'm a child RA too diagnosed aged 2 and they could only work that out because i crawled in the the morning and walked in the afternoon. All rheumy conditions take forever to full diagnose and in that time things are never easy. your doctors will carry on doing tests and marking things off their list until they are left with one diagnosis then the real treatment will start. until then they will try to manage the pain.

    good luck
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    thank you LouLou for your reply. Yes thats all they are doing at the moment is trying to manage the pain. She has got a cold now and has all swelled and stiff again.

    As probably with most people with chronic conditions it just seems to drag on, it seems ages ago that she was able to go to town for the day with friends and not have to worry about what pain will i be in next day or have i got my tablets with me.

    But hopefully we will get answers soon, its made harder for her as me and her dad are separated and until she was in hospital in August he hadnt seen any of the children for nearly a year. He does contact her by text once a fortnight but i really dont think he has any concept of what she is going through. Which also leaves me with no support from him or his parents. My parent are both sadly not here. She hasnt seen her grandparents since she came out of hospital and they only live round corner. just a good job i have some good friends otherwise i dont know how i would manage.
  • Loulou11
    Loulou11 Member Posts: 86
    edited 30. Nov -1, 00:00
    If you ever need a chat just jump online, the people on here seem really friendly. I have now had to medically retire from work so I'm always about! And please try not to worry, this is not your fault, your daughter is stronger than you think. I have worked, married, had children, paraglided, parachuted, abseiled, rock climbed and lots more. She will adapt to her disability and it will make her alot stronger in mind. My dad left my mum when I was 2 (diagonosis year) and for years blamed myself, however turns out he ran off with the woman downstairs. All you can do is reassure her that she can do anything she puts her mind to. And if her dad is offish it's his loss xxx

    Chin up try to worry about the things you can change and not wot you can't, that's how I live my life, xxxxx :D
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    what a lovely reply loulou11 and thank you x
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Big hugs to you both! Sounds like tricky time for the family so well done to be getting through it.
    I have an inflammatory arthritis but I am also hypermobile with hypermobility syndrome. I can remember at the start of diagnosis days being asked if there was any link between my period cycles and my symptoms because that is supposed to be something that can be indicative of hypermobility syndrome (you can be hypermobile without having hypermobility syndrome). The Hypermobility Syndrome website might be a good place to check that out.
    Lou Lou is correct, come and talk to us when you or your daughter needs support and you do adapt to your arthritis. It is scary at first but over time it becomes more 'normal' and you get back to enjoying life.
    I had problems as a student so I had help at university, things like dictaphones/ digital voice recorders to record lessons, asking teachers for notes and getting extra time in exams are all possible. Sounds like your daughter could do with them. I also find typing much easier than writing - could your daughter do that for some things?
    GOod luck to you both. LV xx
    Hey little fighter, things will get brighter
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    thank you for your reply LignumVitae. the school are going to assess her for a laptop, so that she can type not write. She also has what the school call a comfort pass so whenever she feels like she is getting stiff or sore. she can show her pass and be excused from the lesson or leave early so she can get to her next lesson. i cant fault the school at all they have been very good at accommodating her.

    Had a letter from the rhuematologist today and rather than JIA she thinks she has reactive arthritis. But to what infection is unclear. How long does reactive arthritis tend to last and does it come again if ahe becomes ill.

    She had a cold towards the end of last week and spent 2 days in bed due to pain and stiffness as opposed to the cold.

    The rhuematologist has refered her tp physiotherapy and occupational therapy. what role and how will these 2 therapists help her and our family.

    thank you Dawn
  • Lozzy
    Lozzy Member Posts: 46
    edited 30. Nov -1, 00:00
    When they were unsure if my DD had JIA or reactive arthritis they said if it goes with in 3-4 weeks it was reactive but if it lasted 6 weeks or longer then it was JIA.
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    thank you for your reply Lozzy. we have gone from suspected JIA to reactive and she is definitely worse now than when all this started in June. Im sure we will get the right diagnosis and treatment and im thankful that she is already under the care of consultants. i think being admitted into hospital has helped on that score.

    Dawn
  • Lozzy
    Lozzy Member Posts: 46
    edited 30. Nov -1, 00:00
    I find it funny that different hospitals work so differently, my DD has only been having symptoms for 8 weeks and shes having steroid injections on Thursday but it sounds like your daughter have been having problems for a lot longer.
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    hello how do other people cope with the emotions of the rollercoaster ride, daughter doing homework on computer. shes very sore and stiff today. so shes tired and sore not a great mix.

    i turn round to see how shes doing and she crying i ask whats up, she replies she dont want arthritis anymore she just wants to be 'normal' like other girls her age .

    Shes fed up with her dad as although he came to see her whilst in hospital and was very concerned, since she has been home he has not asked her about hospital, tablets oe how she is managing, or offering to come to any appointments with us,as he is more interested in his partner.

    School work is getting on top off her as when she is off she has to catch up with all her course work.

    All this means one very stressed and upset young lady who happens to be in a lot of pain. how do others cope and support at the same time.

    Thank you Dawn
  • Loulou11
    Loulou11 Member Posts: 86
    edited 30. Nov -1, 00:00
    I used to have a warm bath or soak my hands in warm water to loosen the muscles before using the computer it helped a bit. And also there is a voice recognition package called dragon that can help, see if the education authorities in your area can help with this, as under the DDA act she should receive all the help she can get!!

    Each day is different and all you can do is be there for cuddles and tissues but she will get through this, watching others do things you want to is very hard and being sore just makes things seem so much worse.

    Good luck xxxx
  • Lozzy
    Lozzy Member Posts: 46
    edited 30. Nov -1, 00:00
    Is there any way you could arrange something so she can let of some steam? All work and no play and all of that. A shopping trip or a sleepover with friends, something where she can forget about school and treatment where she can just be a teenager again.
  • lifesupsanddowns
    lifesupsanddowns Member Posts: 21
    edited 30. Nov -1, 00:00
    thank you for your replies. ive had a letter today from the school they have an occupational therapist going into the school, to help her and and help her with the emotions of the situation.

    She went go karting with friends but didnt participate as she felt that it would make her to sore.

    I am on hand with cuddles and tissues whenever needed, i think yesterday was just a bad day and things had got on top of her.

    So hopefully today will be a better day, its her last day at school today for half term. so she should be able to rest up a bit.

    but thank you once again.

    Dawn