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My daughter has juvenile uveitis arthritis age 4

PardeepPardeep Posts: 20
edited 20. May 2016, 11:45 in My Child Has Arthritis
Hi everyone I am new to this. So please bare with me. I have a daughter who who has juvenile uveitis arthritis. I first noticed something wasn't right when she start limp walking and wouldn't allows me to put on her socks and shoes. I went countless of time to the doctors about her legs knees and ankles being one finger being swollen. I took them over all 6 months to diagnose her. She wasn't even two years old when the symptoms started. Today she is four years old and has been on methotrexate coming up to two years now. She's hasn't had a flare up in these past two year since being on her weekly injection. My only concern is now they want to take her off it in February and her eye consultant said her eye inflammation tends to reoccur in children who have uveitis when they come off the injection. Although this is a huge milestone for her and us parents but I can not but worry now about her health when she comes off. As I don't want to start all over again from where it all started two years ago. She had to have joint Steroid injection in both knees both ankles both feet and one ring finger. And her daily eye steroid eye drops. I'm just worried she may not have outgrown it. Which is what I'm hoping for. I'm always worried about her health and stressing out every time she gets ill. I'm at a pint were my hair has started to fall out. I get so anxious. And now I'm dreading her rheumatology appointment in February. Thank you for reading my long post


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Comments

  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Welcome to the forum Pardeep, I am sure you will find support, advice and light relief.

    I am one of the moderation team, we all have one or more arthritis conditions or look after family with the same. If you need help with the technicalities of the forum just get in touch via a personal message.

    Best wishes
    Mod B
  • stickywicketstickywicket Posts: 25,870
    edited 30. Nov -1, 00:00
    Oh Pardeep, how awful for you! You, and your daughter, have been through so much already in her life. I can well understand your fear of taking her off the methotrexate.

    I'm sure the rheumatologist wouldn't have suggested this unless her inflammations levels had been at, or near, normal for some time but, in your situation, I would certainly want to know about them and I would also want to ensure that the rheumatologist knew what the eye specialist had said.

    However, it is possible for children to outgrow JIA and it wouldn't make sense to keep her on the medication if she has done. If she were my daughter (I am not the parent of a child with arthritis. I myself was diagnosed at 15 but both my sons and grandchildren are OK) I think I'd be inclined to try it and see what happens assuming she can resume the medication at the first sign of a problem. I doubt any subsequent deterioration in her health would be immediate as I've stopped my methotrexate before operations and found that, just as it takes a while to get into the system to work, so it also takes a while to get out of the system.

    Unfortunately, there are no guarantees in life but I think if you were to be vigilant with her, even if the JIA or uveitis returns, you could get her re-started on the medication before things get as bad as they were before. I do hope so and wish you all the very best.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • PardeepPardeep Posts: 20
    edited 30. Nov -1, 00:00
    Hi thank you for messaging me with such kind words of encouragement. I'm just worried I may miss some signs if she comes off it. As the uveitis I don't even know she had it until she given steroid injections. I'm going to try and keep positive as its all I have right now. I'm wondering if they would gradually reduce the amount of metharexate she has in her injection first. Think I may have to make a list of question ready for that day. Thank you again. So glad that your sons and grandchildren don't have this horrid disease. Hope your keeping well x


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  • stickywicketstickywicket Posts: 25,870
    edited 30. Nov -1, 00:00
    Thank you, Pardeep, I'm reasonably well right now.

    I think it's an excellent idea to make a list of all the things you'd like to ask the rheumatologist before the appointment, including mentioning what the eye consultant said. There is no shame in admitting how anxious you feel about taking your little girl off the medication which has helped her. You might want to ask how often this proves successful.

    I've no idea how they would do this. I know that, when I have had to stop my own methotrexate before operations, I simply stopped taking it. Of course it's easier for an adult as we can communicate pain whereas, for a 4yr old, it's not so simple though we parents tend to have an instinct about when something is not quite right with our children even if we're not exactly sure what it is.

    In your situation, I'd want to ask the rheumatologist if I could ring the helpline to get a quick appointment if there was a problem. Anything that helps you in your resolve to 'stay positive' will help your daughter because a relaxed parent is better than a worried one though, of course, you will need to stay vigilant. Please keep in touch and let us know how you get on.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • PardeepPardeep Posts: 20
    edited 30. Nov -1, 00:00
    Hi. The day has arrived that I have been anxiously waiting for the past year or so. My little girls rheumatology appointment is tomorrow. To see if she can come off methotrexate and to see if she's outgrown it. There is nothing more I want in this world than for her to be completely healthy. I would give anything to hear such life changing news for her and me. Fingers crossed X


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  • stickywicketstickywicket Posts: 25,870
    edited 30. Nov -1, 00:00
    My fingers are crossed for you too. From what I know it's quite rare, but not inheard of, for children to outgrow arthritis. I hope your little girl is that rarity. I really do..
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • PardeepPardeep Posts: 20
    edited 30. Nov -1, 00:00
    Thank you so much. Will keep you all updated on today.


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  • dreamdaisydreamdaisy Posts: 31,556 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Pardeep, I am not a parent so can be of little practical help but I have been reading your posts and feel for you very much. I was very ill as a child (asthma and eczema) and the strain on my mother must have been immense but I was blissfully unaware of that. I do recall that she was always there, whether day or night, and would often sleep on the floor next to my bed if I was having a bad night with breathing (or not, as happened once or twice - these were pre-inhaler days!)

    I am aware that children can outgrow JIA and that uveitis can occur but hopefully that can be sorted out as well. If her bloods are showing that the JIA is truly under control then it may be wise to stop the meth because that is nasty stuff, but , should the unthinkable happen, I have no doubt you will be seen immediately by her current team. I will be thinking of you both today. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • PardeepPardeep Posts: 20
    edited 30. Nov -1, 00:00
    Hi all. Just got back from Birmingham children's hospital and my girl has been taken off all medication. No more frightening Friday's for my daughter (injection day always a Friday past two years) I ended up crying with happiness and anxious about being visual about all the signs if a flare up occurs. My daughter also has active asthma and recently has eczema on her hands. But all that I can deal with as its obvious sign that are noticeable. Thank you DD for thinking of us today. I pray that I don't have to hear jia ever again X


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  • stickywicketstickywicket Posts: 25,870
    edited 30. Nov -1, 00:00
    Pardeep, that's wonderful news :D Thank you for the update.

    I do hope all goes well now for your little daughter. Of course there will be some anxiety for you - what parent wouldn't feel that? - but let's hope this is the end of the injections for good.

    Have a wonderful Friday :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,556 ✭✭✭
    edited 30. Nov -1, 00:00
    That is better news indeed, Pardeep; I am sure you will continue to be vigilant over the next few weeks and months, that is only natural. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • PardeepPardeep Posts: 20
    edited 30. Nov -1, 00:00
    Moving past the three month mark and she's doing so well without her injections. I feels so strange that she's not on them anymore. It' feels like the past two years never happened. She has a rheumatology appointment next month. Hope it's all good news X thank you all for the support.


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  • stickywicketstickywicket Posts: 25,870
    edited 30. Nov -1, 00:00
    I hope so too, Pardeep. How lovely that the good times continue for your daughter and for you.

    It's so helpful for other parents when they can read such good news on here so thank you for re-posting and telling us.

    I do hope the news from rheumatology is even more encouraging. Please let us know.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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