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Is it happening again?

PardeepPardeep Posts: 20
edited 30. Sep 2016, 11:08 in My Child Has Arthritis
Hi my daughter came off the metoject pen in February. She had been having metho for a year. For her JIA. Now we are in August just after her 5th birthday and she has started having stiff neck pain. Doctors say it torticollis. Which occurs in young children. But it has been going on now for nearly 4 weeks on and off. Out of the blue. She had her bloods checked and they came back clear of any inflammation but not so sure. As it took MRI scan to show she had inflammation for her to be diagnosed JIA. They took blood test. Did a ultra sound scan. And nothing showed up until the MRI. So you can understand why I'm still worried x thank you for read my post x


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Comments

  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    I do understand your anxiety. In your place I'd feel exactly the same.

    It's a recurring theme on here that we are so attuned to arthritis that we attribute every ache and pain to it and often the real source is something else, something largely innocuous which lots of others, who don't have arthritis, also get. That can come as a relief but doesn't stop us worrying entirely.

    I think your docs have been thorough and all you can do is wait and see and try not to make your little one any more aware of it than she must be. (If she thinks you are worrying so will she and that will concentrate her mind on it.) Try to give it a few weeks. That won't make any appreciable difference even if - worst case scenario - it is the arthritis back again. I do hope it's not but I don't envy you your task.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,543 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello again, Pardeep, I am so sorry that this has happened and that you're back: your poor little girl and poor you too. ((( )))

    I agree with Sticky, sometimes we blame everything on arthritis when it isn't at fault. It's unfair enough that we have this in the first place but can then also have the more common-and-garden afflictions too. I am sure that your daughter's docs are aware of her history and will monitor her carefully. I am not a parent but I can understand your concerns and fears: remember we're always here to listen. 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
    Thank you both for you kind words and encouragement. Went to the doctors to see how she's getting on and this morning she has woken up with a limp. Which I know all too well. Doctors want her to be seen at the hospital and now this evening she also has a stiff neck too. I can't explain how heart broken I am. These summer holidays were ment be a new beginning but now have turned out to be dreadful. Now I'm waiting on appointment and god knows how long that will take. I was hoping she could start this school year fresh. But who knows what's around the corner now.


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  • dreamdaisydreamdaisy Posts: 31,543 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh dear, your poor little girl, this is rough stuff indeed. We never know what is round the corner and maybe that's a good thing. We make plans for our lives but there is no guarantee that they will come to pass because life is a law unto itself. Please let us know how she gets on and take care of yourself too. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    You don't need to explain how heartbroken you are, Pardeep. It must be like a never-ending blow in the solar plexus.

    I know you had such high hopes of it having gone away.

    Remember, your hopes were high because the medication was working. It can work again. Things will get better. Not as better as you'd hoped but, with luck, she'll soon be her old self again, albeit with the help of the medication.

    Have you seen this online Pain Management Course for children and their parents? http://arthritiscareforum.org.uk/viewtopic.php?f=43&t=46870
    “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
    Just got back from the hospital today it was confirmed that it is back and she has been book in for a MRI scan for her neck. She swollen foot. She been prescribed PIROXICAM for her neck and foot. And will how much that will help her. If that doesn't work she may need serious injection in the foot and may need to go back on the metoject pen. I'm in tears and have lost faith X


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  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    ((( )))

    Stay strong, Pardeep. Your little girl needs you to be strong.

    It is immensely hard to watch our children in pain but children are much more resilient than adults. We see only what might be lost. They just see an interesting world unfolding. Yes, if the arthritis is permanent and in need of constant medication, there will be opportunities lost but there will still be very many opportunities available.

    If I remember rightly, the reason why they thought it might have gone away was because the medication was controlling it so well. That can happen again and I very much hope it does.

    Have you considered ringing our Helpline people for a talk about it?
    “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
    I don't know how I fell right now. Finding out from a MRI scan my little one has a cyst behind her brain which is causes her neck spasms. It's not arthritis that's what the rheumatologist just said on the phone but can't say what it is until we see a Neurosurgeon. I can't believe this is happening right now !!!!!!


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  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    Oh Pardeep, how frightening! But hang on in there. Think positive. A cyst is a cyst. Many are just benign and can be dealt with. And children have much better powers of recovery than us adults. I am thinking of you very much and I do hope all will be well.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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