my Grandaughter Kassidy

lavenderlady
lavenderlady Member Posts: 409
edited 13. Oct 2011, 14:20 in My child has arthritis
shes 7 and has suffered with kidney and bladder problems and is under GOSH for this but she has been having problems with her knees mainly, she gets a high tempreture and feels lousy and cannot walk down stairs and has to be carried down, problem is both me and her other nan suffer with OA me with Sero negative as well, my nan had both OA and RA so it does run in the family a visit to the DR resulted in numerous blood tests which all showed no Rhumatoid factor in it , so they Dr says its not RA but could be like me sero neg,she has these high tempretures for a day or so then the pain goes after a day the DRs say with RA it would be longer then that , the Drs also say it could be growing pains which my eldest had at the same age as her where the bones grow faster then the muscles tendons etc causing pain, I used to have to massage my sons legs and joints and he had to keep them warm so wore socks to bed , can anyone else tell me if this sounds remotely like someone they know as my daughter in law is at the end of her patience and feels like shes being fobbed off thanks michelle

Comments

  • Niknak
    Niknak Member Posts: 44
    edited 30. Nov -1, 00:00
    Hey there, I'm so sorry to hear about your granddaughter, can I ask how old she is for growing pains. I myself would not accept that growing pains can cause such pain and would ask for a second opinion. I don't know If they have ran full rheumatoid bloods on kassisdy which includes looking for specific genes and I would ask for them to be done If they haven't. My daughter has juvenile arthiritus and days and weeks very with pain, she has pain in her knees one has been swollen whilst the other has never, however my consultant says the arthiritus is effecting both knees which she revealed when she was stretching bending her legs etc. Obviously I'm not a doctor but I would push for a second opinion and a child rheumatoid specialist as it does make a difference. My daughter saw an adult specialist first time round who said she was fine, however when I pushed and she went to a specialist children's hospital it was diagnosed as child arthiritus. Don't know where in the world you are but I live in Manchester and there is only one specialist or I would have to go Leeds or Liverpool. Please don't be fibbed off and fOllow your instinct as I did, as If it is related to child arthiritus the sooner treated the better.
    My heart goes out to you, I check in most days should you have anymore questions or need support. Chrissy :roll:
  • Niknak
    Niknak Member Posts: 44
    edited 30. Nov -1, 00:00
    Sorry chrissy again re read ur post, pain in knees sounds odd for growing pains and I see you've has bloods. Just wanted to say all my daughters rheumatoid factors blood all fine, her markers have never been raised all bloods negative yet she does have arthiritus and she is three, it can be very normal for bloods to be fine as this is not the only factor they assess, also u can get a temp with systemic arthiritus but is usually associated with a rash too, I'm not a doctor but maybe a second opinion with a child rheumatoid specialist would be helpful and rule it out and put your mind at ease, they also say arthiritus can be genetic. Don't know if this helps at all
    Chrissy x
  • Niknak
    Niknak Member Posts: 44
    edited 30. Nov -1, 00:00
    Me again, my daughter gets temperatures too they don't last longer than couple of days usually 24 hours, my gp told me kids don't get arthiritus but there not specialists x chrissy x
  • lavenderlady
    lavenderlady Member Posts: 409
    edited 30. Nov -1, 00:00
    hi Crissy, yes all of Kassidys blood tests came back normal, she also has eye probelms which I noticed can also be part of her having arthritis , luckly the Dr called my daughter in law back the next day and said he was worried she had not taken it all in as she looked stunned, he told her he was testing for different types of childhood arthritis she has her blood test tomorrow so should know more next week, shes already under GOSH so maybe it can all be dealt with up there, we live on the Isle of wight and have a great hospital in Southampton not too sure if they do child hood arther, but it wont be left now, shes getting older and is finding life is hard right now she could be getting depressed, which is a horrible thought, knowing what pain she is suffering breaks our hearts and with both nans having arther it could be heriditery, Lisa my DIL is popping on here now and a again to read any updtaes will get her to register as I think talking to another mum with similar problems can only help, thanks Michelle
  • Niknak
    Niknak Member Posts: 44
    edited 30. Nov -1, 00:00
    Aww you poor things and my heart goes out to to you as I really know how you are all feeling, my little girl has not long been diagnused and I find it hard to accept still an emotional wreck really. I just wanted to say that nicole has never tested positive for any bloods gene rheumatoid etc, even her inflammation markers have never been raised yet she has two joints affected. And is about to start medication which is all hard to bare. I an here to support you and your daughter in law if you like, I to was fobbed off. Maybe it would do your daughter in law good to talk to other mums, I'm new to all this too and it helped me no end. Much love chrissy x

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