3 year old with arthritis and on no treatment

charlee
charlee Member Posts: 8
edited 7. Sep 2011, 02:21 in My child has arthritis
hello im new to all this so im hopeing someone gets back to me but our 3 year old daughter was diagnosed with polyarticular jia about 12 months ago and she was on methatrexate and she had an allergic reation 18 weeks into treatment so they took her off and put her on iv steroids and she had another reaction. they then put her on etanercept and she reacted badly to that aswell. her consultant has no idea what to do next which is a worry for all of us does anyone have any advice for us x x

Comments

  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi Charlee,
    What a worrying situation! I'm guessing she is struggling with pain/mobility whilst on no meds? Where in the country are you? Does she attend a speicalist unit? If not, I would ask for a referral to a regional centre, even if it means travelling. it would be worth it for a specialist opinion and plan, even if it is then implemented and followed up more locally.
    Get back to me if i can offer any support.
    Sam. x
  • charlee
    charlee Member Posts: 8
    edited 30. Nov -1, 00:00
    hiya sam she is in a lot of pain at the mo and has trouble doing even the smallest of things like toileting or getting in and out of bed the only people she sees is a consultant in cheltenham and a consultant in bristol but they are both baffled about what to do we live in cheltenham and are willing to travel to get her the help and support she needs.there is no one we know in cheltenham who is going through the same and we feel really isolated. x x
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi Charlee,
    I really feel for you. Watching our little ones suffer is worse than suffering ourselves and feeling so helpless is mind-numbing.
    We are in Bristol and Freya is taken care of by the Childrens hospital rheumatology team, who have been brilliant, so im surprised they are so stumped with your daughters care, given they are a regional centre. My own ethos is that we have to fight for our kids, as no one else is going to do it for them, so perhaps keep on asking for a clinic appointment, and pose the question that if they cant come up with an answer locally, perhaps they can refer you to someone else who can. I guess the difficulty is that all the drugs and solutions they would normally use, your daughter has reacted badly to - do they know why? The rheumatology specialist nurses at Bristol should be able to offer some emotional support to the family too, so make sure you tap into al that is available.
    Not sure I can help much, except to offer some support to you here and encourage you to look for a consultat who may be able to come up with something new.
    I know Great Ormand Street have pretty impressive credentials and have read good things about the team there so I know it's extreme, but might be worth asking the Bristol team to drop them a line asking for further advice.
    Sorry, I can't suggest anything else, but keep me posted on what happens and if you need a moan, i check in heere regularly so will try to offer support where I can.
    Sam. x
  • charlee
    charlee Member Posts: 8
    edited 30. Nov -1, 00:00
    is there anyone else on here who could give me some more advice please sam i am very gratefull for your advice thankyou x x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi charlee, what a difficult time you must be going through. This is a nasty disease, the meds that treat it are strong in nature and can cause all sorts of trouble for the patient (as you have found out) as your daughter seems to be very unlucky on that front. I am surprised that your consultant is shaking his head and not considering other options - having said that I know there are other options for adults, I hope the same applies to the little ones.

    When she was on the meth was it given in tablet form? There are other enbrel-type treatments available in my area (Suffolk) so I presume the same for you. I think you need to contact the consultant again and stress the fact that your girl is struggling, you are struggling with watching her struggle, and establish from him whether there are other options. If he says no then it may be time to seek a second opinion. I wish you all well. DD

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