Mum to 2 and half yr old with JA

tattymouse
tattymouse Member Posts: 6
edited 22. Mar 2010, 16:53 in My child has arthritis
Hi All

Thought i would introduce myself Smile

My little girl was diagnosed at my local hospital a few weeks ago with JA. She has it in both her knees. She finds things a struggle most days.

We are still waiting to see the specialist in bristol in april. That will be her first appointment there with a specialist.

Would like to know if there is anything that i can do for her in the meantime while we are waiting to go to bristol. Have been to my GP and all he could give me was paracetomal for her.

Also what can i expect from the first specialist appointment? Its all been a total shock to us as we really didnt know that children could get this condition.

Anyways would be lovely to get to know you all

Dawn x :)

Comments

  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Hello I'm michelle mum to 4 kiddies. My 4 year old Kayleigh also has JIA but in many joints. I find the weather really affects her and on bad days using one of those microwave wheat bags seem to help her. They say to alternate with cold but this doesn't seem to work on her.

    We're also under Bristol hospital care but everything is done down here at local hossie for her including when Bristol consuktant comes down here she's on the clinic list.

    My daughter was put on paracetamol and ibuprofen by GP's and still is on ibuprofen we are stopping paracetamol as she has had steroids and is currently on methatrexate given to her via injection but it can also be given orally.

    Bristol is a nice place but a total bummer if you drive so much easier to go by train and get the free shuttle bus to the hossie. Parking is a nightmare as it's in centre of town. The dr's and nurses are lovely there.

    I'm guessing stairs are a problem for your little one but as so young can be carried ok. Warm baths will help and gently help move the legs back and forth. I think the hardest part is getting a diagnosis and the starting on the help like physio and hopefully hydro will help.

    Good luck with it all and I hope you both get the help you deserve hugs.

    Michelle
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    So relieved you two have got together. I know there are other mums going though similar with their little ones, but being so busy you all probably find it difficult to have time to call in here.

    My heart goes out to you all but it must help a little to know that you are not totally alone with it all and you can always private message each other too.

    Luv
    Elna x
  • tattymouse
    tattymouse Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi Michelle lovely to hear from you :)

    I have 5 kiddies and Olivia who has JA is our youngest.

    I have tried to put hot water bottles etc on her kness but she just wont keep it on there.

    We are a good hour and a half from bristol so we are hoping that we wont have to keep going to bristol and that they can do more in our local hospital.

    Its all this waiting around! I am not a patient person lol :)

    I find that Olivia doesnt always want the paracetomal so she only has it when she asks for it. she says medicine and i make note of the time ( so i dont give her too much in one day) she tends to only ask for it once a day.

    She does find stairs a real struggle and in the mornings she cant even stand on her legs which is heartbreaking to see. Shes using the toilet now so have to keep carrying her up the stairs all the time but what will happen when she gets alot bigger??!!

    I make sure she has a warm bath everyday and also massage her thighs so it gives her a little ease. I think i am doing everything i can for her till we see them in bristol.

    Thanks for your reply :)

    Elna Thanks very much for your reply :)
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    I was told to give her paracetamol and ibuprofen regulary regardless if needed to help build it up in her system until consultant appt. came through. The reason being that as it builds up it can help with everyday pains so might be best to give her paracetamol 3 times a day regulary and if that doesn't work go back to gp who will probs prescribevnurofen (strongest they can give until consultant has seen) then they can both be in her system building up. We get given 5 bottles nurofen and 3 bottles paracetamol every repeat prescription we go through that much :(

    I use a wheat bag with kayleigh as I find it moulds to her better and doesn't hurt her as much.

    We're a good 2 hours by train a bit longer by car from Bristol and the dr there said because of the number of children I have the main care can be done in derriford although we will have to make odd occassional trip up to Bristol so hopefully same thing might happen with you depends if your hossie has facility to deal with it.

    It's so hard seeing them in so much pain kayleigh has it in 30+ joints and before methatrexate there were times she was in that much pain I couldn't even hug her for comfort now it's slightly better but still heartbreaking everytime.

    I wish you the best and hope it comes through quickly. I'm on facebook and if you want to add me I'll pm the details.

    Michelle xxx
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    Hi Dawn,

    I have an 8 year old little girl she was first diagnosed with JIA at 3. Reading you post brought back so many memories of my little girl, we used to carry her everywhere and watching her in so much pain was heart breaking.
    The hospital told me to give her Paracetamol and Nurofen untill her cons appointment was through as it would help with the swelling and the pain, to be honest I'm not sure what it did do but I just felt like I was helping her in some way. Also the dose the hospital gave me was totally different to what it is on the standard box, they worked it out from her weight and it was a lot diffent and she was able to have a lot more of it. Maybe worth fining out if you can, maybe the health visitor would know??

    Shannon was admitted to hospital as she was quite poorly and our gp couldnt find what was wrong with her. We had quite a battle with getting her diagnosed. 5 years on she is now on Methotrexate injections and is plodding along...we are having a battle with her school as they are not interesting in knowing what Shannon has, but that is a whole other story!!!

    We was told Shannon had Oligo Arthritis as there are a few different types of JIA but yesterday we were told it is now Extended Oligo. She has also had the eye disease that goes with it to.

    I could go on for ever but will stop now, other than to say this forum is the most supportive one I have found so please keep posting and hope to hear that your little girl is getting the help she needs really soon.


    Take Care
    Sam
    xx

    ps I also found the wheat bag much better than the hot water bottle it wasnt so heavy and would wrap around her joints. She also used it in bed to help her settle at night. xx






    tattymouse wrote:
    Hi All

    Thought i would introduce myself Smile

    My little girl was diagnosed at my local hospital a few weeks ago with JA. She has it in both her knees. She finds things a struggle most days.

    We are still waiting to see the specialist in bristol in april. That will be her first appointment there with a specialist.

    Would like to know if there is anything that i can do for her in the meantime while we are waiting to go to bristol. Have been to my GP and all he could give me was paracetomal for her.

    Also what can i expect from the first specialist appointment? Its all been a total shock to us as we really didnt know that children could get this condition.

    Anyways would be lovely to get to know you all

    Dawn x :)
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    Hi my names Susan, I have a 7 year old with JIA and although it has just being dyignosed at best guess, buy the hospital and ourselves, she has suffered un-treated since the age of 2 1/2!!!
    Everything has been moving so quickly lately and it feels we have not had 2 seconds to take it in!!

    We have seen some progress after steriod injections and are hoping that the metatrexate will kick in soon.

    Lucy is the eldist of 3 and we have found that our other 2, especially our middle girl, have become carers for her. They love helping her and being involved. Explaing Lucy's illness to them has helpped them tons as not only do they understand why she is sore they understand how they can help her.

    I wish you luck with it all.
    x x x
  • butterflywings
    butterflywings Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi

    I am a newbie here and I first posted in the 'hello' part. Anyway my daughter (who is now 9) was diagnosed with Oligarticular JIA when she was 15 months old. We have been back and forth to Bristol Children's Hospital since then what with physio or the eye hospital or just to see the consultant.

    It was all a shock to the system at first, but I guess it becomes a regular thing after a while.

    The consultants there are very nice and approachable, but you have to be firm with them - you know your child best. I have been there when my daughter is having a 'good' day and I know that she is in alot of pain and uncomfortable, and that she has been for a while but she is a lively thing and sometimes they only see that more than the pain; makes you feel uncomfortable i guess.
    X
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Hi everyone, I'm just popping in to say 'hi'. I was diagnosed with JIA aged 7....erm...36 years ago!

    I was unable to climb stairs because of knee stiffness so my dad used to give me a piggyback. In those days, I had to miss quite a lot of school because it was unusual to have lifts in schools. Always made it to class parties tho' as my lovely headmaster would give me a piggyback up 3 flights of stairs!

    Despite being diagnosed at a young age, I have actually spent most of my life free of pain. I hope your young ones get a respite from their pain too.

    Lois x
  • duckydeni
    duckydeni Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi Dawn,

    I was finally diagnosed with JIA when i was 2yrs (im 24 next week), it took almost a year for my condition to be recognised. My mum was called a paranoid mother and sent away so many times. I was even treated in hospital for a rare bone marrow disease that hadn't been seen for 200 hundred years...... but doctors soon realised i had Rheumatoid and started me on Sulphasalazine. I took a spoonful twice a day and that helped with the swelling but not the pain. I was taking calpol for that up until the age of 10.

    Physiotherapy was a great help to me. I used to get to go swimming (with armbands of course) in a heated pool. I'm not sure how long i done that for i was so young, but to this day i find that warm/hot water is a huge help.

    Pillows too, i have hundreds of them on my bed at home and fleece blankets. It all may sound a bit daft but for me these little things made me comfortable and warm and when i felt cosy it helped me to sleep or rest. I can't sit on leather suites because i find they make my whole body feel cold for example.

    I don't take any medication now and i haven't since i was 10. I only take pain killers when i absolutely have to. But that's just the way i want to deal with my condition. I truly believe that its not always about what the medicine can do but the things around you or ways you adapt to your environment that makes all the difference.

    i'm not sure if this helps at all but i wish you all the best of luck

    Deni
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    Deni i know exactly where u are coming from. I have been fighting for 4 years to get my little girl recognised. She is 7 and the hospital think she has been un treated since she was about 3, which is about right by my reconing. I had her to doctors every 9 months or so asking them to look into it, and they fobbed me off with one thing or another, telling me it was stuff she would grow out of!!! It was so frustraiting, but at least now we are on the right track!!!

    Keep smiling all new mum's/parents and keep on at them x x x