9 yr old son just been diagnosed - any advice appreciated

joshuasmom
joshuasmom Member Posts: 9
edited 26. Dec 2012, 06:36 in My child has arthritis
Hi.
My 9 year old son was seen at hospital this week and diagnosed with Rheumatoid Arthritis. He has pain and stiffness in almost all of his joints, but mainly complains about his knees, hips and hands. The doctor said she would refer him to someone who specializes in JA. Blood tests were taken, although she said they may not show anything and Ibuprofen syrup given for him to have three times a day.
I have so many questions and wish I had asked more at the hospital, but I think I was in shock and it is only just hitting home now :(
If anyone can answer any I would be really grateful.
Can arthritis be diagnosed just from examination?
Can it be arthritis if there is no swelling? Sometimes I think his knees may be swollen but I'm really not sure.
Do the symptoms come and go throughout the day? Josh seems to really struggle with stairs first thing in the morning and before bed (he often wants to be carried), but sometimes he seems to be fine. Is this normal?
He says that the Ibuprofen only helps a little - what other treatments are available when so many joints are affected?
How long does it normally take for the specialist appointment? I feel like we've been given this terrible diagnosis and just left with no information whatsoever.
Sorry for the long post - just feel like my head is about to explode :?
Any help/advice welcomed.
Thanks.

Comments

  • iluvhobbits
    iluvhobbits Member Posts: 32
    edited 30. Nov -1, 00:00
    Hi,
    Really sorry to read about your son, I am the Mum of a 13 year old daughter who has had JIA since she was 1 year old, I know how scary it can be when you first hear that your child may have arthritis.
    I would suggest getting the book Kids With Arthritis- A Guide for families by Carrie Britton, it can be ordered for free, details are on this web site,
    just E mail a request to [email protected]
    I have found this book invaluable, I reach for it time and time again and I think you will find it excellent in answering all the questions you have.
    If you are concerned about medication give your GP a call, NSAID such as ibuprofen are always the first option given but you may find your son isn't on the top dose he can have but check this out with your GP.
    Children with JIA are usually worse first thing in the mornings as they wake up with stiff joints, a warm bath can help to get them feeling more comfortable. After a busy day at school when they are feeling tired joints can also feel worse again and other times it may seem as if they have nothing wrong with them.
    In my experience my daughters joints, (knees and ankles) have always been swollen when her arthritis is active, they feel warm to the touch and feel a bit 'squissy' with fluid on the joints.
    I hope this helps a bit, hopefully your appointment with the specialist will come through soon, get a list of questions written down ready to ask them so you don't forget anything. Try not to worry, we have been living with JIA for 12 years and have lived to tell the tale!
    Best Wishes,
    Sandra
  • joshuasmom
    joshuasmom Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi Sandra.

    Thanks for your reply and info :)
    I have ordered the book, so hopefully that will give me some more answers.
    Josh's knees do feel a bit squishy but not particularly warm, so not sure if they are swollen or not :? Will have to ask the doctor when we go to the next appointment.
    His symptoms do sound so much like arthritis, but I think I'm in denial - I can't quite believe it yet. :(
    At least Josh can tell me if he is in pain - it must have been really tough for you with your daughter having it at such a young age - I hope she is doing OK.

    Best wishes
    Gabrielle.
  • iluvhobbits
    iluvhobbits Member Posts: 32
    edited 30. Nov -1, 00:00
    Hi Gabrielle,
    I am glad info was of some use, hopefully the book will arrive soon and give some of the answers to your questions.
    Keep us posted how you get on at the hospital.
    Have a good half term and try not to worry.
    Best Wishes,
    Sandra :)
  • joshuasmom
    joshuasmom Member Posts: 9
    edited 30. Nov -1, 00:00
    Thanks Sandra - will let you know how things go.
    Hope you have a good week too :)
    Best wishes
    Gabrielle
  • pollyj
    pollyj Member Posts: 16
    edited 30. Nov -1, 00:00
    Hello Joshuasmom,
    I have just read your post about your sons diagnosis and it takes me back in time. My beautiful boy was diagnosed with rheumatoid arthritis at the age of 15 and I felt absolutely isolated and lost. It's not like tummy bugs etc that can be sorted with medicine and discussed with other mums. It had never ocurred to me that children could suffer from arthritis and I didn't know anyone in the same situation that I could talk to. Apart from this forum I still don't.
    If your son does have arthritis it need not be the end of the world. My son is now 21 and despite having flare ups and treatment regularly he has been an absolute hero. He rarely complains and achieved top boy's exam results in his secondary school. He then went on to university and got a law degree. It has been a bit of a rollercoaster at times but what I am trying to say is that these kids are amazing and do their utmost to come through this horrible disease. In fact my son just accepts it. He's so much better than me at that. Stay strong and know that you will experience a pride in your son that parents of healthy children never know.
    Wishing you and Joshua well.
    Polly
  • joshuasmom
    joshuasmom Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi Polly.

    Thanks for your reply - it bought a few tears to my eyes.

    We have only lived with the diagosis for a few weeks but it has already been a rollercoaster of emotions. I think kids accept it all better than us as they tend to take each day as it comes rather than worrying about the future.

    My sons name was picked out of a hat yesterday at school to go to Leicester Cathedral for the Royal visit and he is SO excited :) The headteacher is going to take a foldable chair for him as they have to stand around for 2 hours. I was joking with Josh about it and asked what he would do if the Queen came over and asked him why he was sitting down and he said "I would tell her I've got Arthtitis, but I would tell her in a really cute voice" !! How sweet is that?

    Anyway, thanks again for your message - it brings some light to what seems like a very dark tunnel :)

    Best wishes
    Gabrielle
  • Loulou11
    Loulou11 Member Posts: 86
    edited 30. Nov -1, 00:00
    Hi joshuasmum,

    I'm an RA person who was diagnosed at 2years (I'm now 42) and the only real advice is take your lead from your son, if he's having a bad day you will be the first to know it! Anyway all I wanted to say is although I am an adult nw I have two grown up children, and have completed many dangerous sport, parachuting, abseiling etc and nothing will stop me, up until recently I worked full time and live life to the full. I now believe that RA doesn't rule me, I call the shots ( I just don't push my luck lol) keep strong and feel free to ask any questions to any of us that's what we are here for xxx
  • noahjojo18
    noahjojo18 Member Posts: 7
    edited 30. Nov -1, 00:00
    Hello joshuasmom, i'm very sorry for your son. I can't answer your all questions but few questions i can answer. There are so many types of Rheumatoid Arthritis like Juvenile Rheumatoid Arthritis, Pseudogout Arthritis, Lupus Arthritis, Infectious Arthritis, Hemorrhagic Arthritis, Ankylosing Spondylitis. Due to thickened synovial fluid RA occurs. Excess of this synovial fluid causes damage of cartilage. you can read brief on this specific topic on "joint health magazine" website. I hope few of your questions got answered.

    Thank you
    noah

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