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3yo daughter undergoing diagnosis of JIA, feeling utterly he

rebelbrethrenrebelbrethren Posts: 5
edited 10. Sep 2014, 07:17 in My Child Has Arthritis
Hi,

First time here, as you might guess from the title.

Our 3yo daughter started complaining of pain in her knee 2 months ago, which seemed odd the time since we couldn't recollect any falls or similar. It was shortly after a gastro bug and also her younger sister being born, so initially we wrote it off as feeling a bit off and just wanting to be carried too.

Within a week she couldn't bear weight on that leg and we were in hospital getting checked out. Dismissed as likely transient synovitus of hip and told to come back if wasn't better few weeks. The next week was better so seemed a correct diagnosis at the time.

Another week or so passed and she's complaining of pain in her wrists, not picking things up well, general tiredness and limping again, so, back we go. Took 24 hours as in-patients until finally seen by a pediatrician who urgently order blood tests, x rays and ultrasound. We were then told it was possibly JIA, but the bloods would take some time to come back. Give ibuprofen 3 times daily.

The appointment was due to be 9th June. A few days before we moved house her neck started become stiff and very painful and limited In movement. The day before we moved, we were back in hospital, unwilling to wait until the 9th out even after the move.

IShe and I just missed our house move (which my wife had to handle without me or my daughter and whilst nursing the 3mo baby) as my daughter was referred to Bristol for a neck MRI under general anesthesia. My daughter was too upset at all the hospital visits, barely let herself be examined or even weighed. She refused liquid paracetamol, and is now refusing the naproxen we were sent home with.

We're waiting for a bed to be available, Monday, to admitted to Bristol children's hospital (an hour from home) to spend potentially a week there - at least until they can get enough specialists together to do a general anesthetic, MRI of her neck, more bloods... And a bone marrow biopsy.

We're terrified. I know the biopsy is to rule out leukemia since aggressive steroids would be disastrous if JIA diagnosis was wrong.

Worse, how on earth do I keep my daughter "ok" with this happening? It takes four people to pin her down for a blood test, a cannula isn't going to go down well. And how do we get her to keep taking the naproxen without spitting it out or a 3 hour battle of wills?

This is heartbreaking.

Comments

  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    It is indeed heartbreaking and I am so sorry that you find yourselves fighting this truly dreadful situation. I am not a parent but was a very sickly child and recall all too clearly the stresses and worries of being in hospital being hurt by people who were supposedly helping me. :( I was too young to understand (as is your little one) and I am not sure of a way round this.

    I wonder if bribery might be a way? 'Take your special meds which will help you feel better and then you can have some Smarties' might be a way in; I know it's not ideal but if she can learn to associate the nasty with a pleasant then it may make things a little easier. I hope that other parents will spot your post and reply but this does tend to be a quieter board on here because parents are generally busy people. Please don't lose heart, keep in touch and I will do what I can to support you through this. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,867
    edited 30. Nov -1, 00:00
    What an utterly dreadful situation for all of you! You have all coped amazingly with the triple whammy of new house, new baby and the onset of potential JIA. You and your wife must be emotionally drained.

    Practicalities. I've never had a child with JIA but I have had two small children of my own while coping with my own RA and I would agree with DD that this might be a time to forget all your parental resolutions and resort to a spot of bribery and corruption. If the pill can literally be sugared it might go down more easily.

    Your little girl is not really at an age where she can be reasoned with. All she knows is that her life has suddenly changed horribly. She is in pain. Her old familiar house has gone and she's also got a new sibling, never for my money accepted by a three year old as the wonderful blessing her parents seem to believe.

    Pharmacists can be very good sources of advice re meds. They will know which can be broken into smaller pieces or crushed (to be buried in something nice) and which must be taken as they arrive in the bottle or packet.

    I shall be thinking of you all this week. It will be tough on all of you but if a spot of emotional support helps we are here.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    Another thought has struck me; you are aware of the implications far more than she, and that must be an added burden. Poorly children can cope amazingly well because they are not so 'learnéd' about matters so take them in their stride. I agree with Sticky in that your lovely girl currently has much on her very small plate, which is tough for all of you.

    Maybe a mild sedative could help? Have the hospital suggested this? I was given one when something unpleasant was done to my left knee and it really helped: the fact that she needs people to hold her down before even the basics are done shows her fear - and reinforces it.

    Ye gods, arthritis is cruel. I wish I could do more to help. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,867
    edited 30. Nov -1, 00:00
    You have all been in my thoughts today. I hope things are going as well as possible.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, how's it going? I am thinking of you and yours very much. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Boomer13Boomer13 Posts: 1,931
    edited 30. Nov -1, 00:00
    Gosh, I can only imagine the distress for you and your family. I have PsA and can only guess at the horror of arthritis in one so young. I am sorry.

    At least there are good meds and procedures, and youngsters are so resilient. I wish you and your girl all the best of luck with this.

    Anna
  • rebelbrethrenrebelbrethren Posts: 5
    edited 30. Nov -1, 00:00
    Thanks all for your comments; I've not had a chance to reply up till now.

    We're in the children's hospital now, day 2. Her neck is horrifically sore, she can't look up or to the sides at all and sleeping terribly as I write this, but she's asleep at least. For now we're managing to disguise her meds in Orange juice but she's started to catch on already.

    Doctors here think.it's polyarthritis JIA (or possibly systemic - she has night sweats and occasional temperatures but it's still up in the air) They are still worries and they want to understand the neck complications better, so tomorrow morning will be the general anaesthetic, neck MRI, bone marrow biopsies, and maybe more x-rays and ultrasounds. They want to hit her with high dose steroids ASAP if it is JIA but they're worried about something malignant like leukemia for which steroids would be very bad.

    Examinations today showed swelling in her right ankle, both knees, left hip, both wrists, neck and jaw. My heart breaks seeing her like this, but hopefully we'll have some answers soon.

    Till then I'll just try and keep being strong for her.
  • stickywicketstickywicket Posts: 25,867
    edited 30. Nov -1, 00:00
    No apology needed, rebelbrethren. You have your work cut out for you – and then some.

    You sound to be a very strong person, indeed a very strong family, but these are testing times. Tomorrow will be a tough day all round though possibly more for you than for your little one if she's having a general. However, it's the first step towards answers which has to be a good thing.

    Thank you for the update. I shall be thinking of you all tomorrow with fingers crossed.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    Thank you for letting us know how things are going, you and your girl are much in my thoughts. This is a very testing and trying time but it sounds as though the hospital are being very thorough and that is important. The strain on you, however, must be immense; I cannot do much to help directly but we're here and will keep an eye open for your posts, OK? Good luck for tomorrow, please let us know how it all goes as and when you can. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • rebelbrethrenrebelbrethren Posts: 5
    edited 30. Nov -1, 00:00
    Thanks all.

    We got the diagnosis today.

    Polyarticular (rheumatoid factor negative) juvenile idiopathic arthritis.

    So I guess I'll be around these parts awhile.

    We get to leave Saturday, they've started the steroid infusions tonight, then it's oral steroids and methotrexate infections to start immediately.

    Can't wait to get her home and have the family together again.
  • stickywicketstickywicket Posts: 25,867
    edited 30. Nov -1, 00:00
    Of course you can't. Being together as a family will help everyone. Plus, I imagine having a proper diagnosis and treatment will be a relief of sorts.

    Be prepared for what often seems to be a miraculous cure from the steroids. It's not. They cure nothing but, even for those of us who have been there and done that several times, it can be hard to believe that.

    I hope things will go much more smoothly for you all once she's established on the meds.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • LisaWLisaW Posts: 37
    edited 30. Nov -1, 00:00
    Can't express enough how heartbreaking your story is. It is so horrible when this disease effects someone so young.

    You are a strong family and you will fight and get through this battle even stronger. At times it may feel utterly hopeless but there is a silver lining in every story.

    The meds will help and soon you will all find your routine coping with JIA.

    My thoughts are with you all.
  • rebelbrethrenrebelbrethren Posts: 5
    edited 30. Nov -1, 00:00
    Thank you again for all the supportive messages, they actually do help. It's amazing how unaware most people are of JIA - as was I until my daughter's problems - and how many people are already underestimating the effects it's having on her, especially her grandparents.

    We got back from the hospital on Saturday, and have managed to unpack a little. The IV steroids made a massive difference; miraculous in fact, as warned. She's been dancing and playing over the weekend, and is taking her oral steroids in strawberry milk (still refusing syringes but it's going in). The fatigue is still there though, and by about 4pm she's just wanting to go to bed. It's difficult getting three rounded meals into her a day :/

    Today, though, a slight limp was back, and her neck was terrible again - struggling to talk normally with her chin down to her chest. : worry that she's flaring already whilst on the steroids.

    We're waiting for a date from the local hospital to start methotrexate; hopefully it will make a huge difference.

    Thanks again to everyone.
  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    At least you know what's what now and I am so sorry you have had to learn that arthritis can affect children too. I was reading an article somewhere about a small girl who was diagnosed with leukaemia and to help her understand what had to happen she was bought a 'poorly' Teddy and a toy medical kit - she would treat Teddy and then the nurses would treat her.

    We'll be here, OK? We can only offer support but we will, OK? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,867
    edited 30. Nov -1, 00:00
    As far as most people are concerned arthritis is something that old people get. I struggled with this perception as a young woman. As for children getting it – I think many people can't cope with the thought so just dismiss it. Maybe your little one's grandparents are close to that category ie having to accept it but struggling so much that they are trying to minimise things. This will make it even harder for you who have to deal with the reality. Perhaps one or two of Arthritis Care's booklets might help. http://www.arthritiscare.org.uk/PublicationsandResources/Youngpeopleandfamilies

    I hope the steroids continue to help. If not, do you have any further instructions while you wait for the meth? Meth usually works on a cumulative basis so, if you have worries, get back to the hospital that treated her.

    Fatigue is a big part of an auto-immune arthritis and we parents do worry about such things as ensuring our children are eating well and healthily. Maybe, for now, rather than three square meals, she'd cope better with eg six smaller ones or healthy snacks. It would be more work for you parents but possibly less worry if it worked.

    Take care and don't forget to look after yourselves in all this. Parents need tlc too.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, we're a few days on now, how are things going? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, you are still in my thoughts. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mommy2twomommy2two Posts: 8
    edited 30. Nov -1, 00:00
    Hiya

    Wow, what a story. I really feel for you all. Your story mirrors mine. I'm now 31 years old but I was diagnosed at 2 years old.

    I'm thinking about you all and sending my love. Stay positive.

    I'm also now on steroids and Methotrexate. I'm more than happy to chat to you about anything as I understand you are new to Arthritis.

    Sarah xx
  • MacshadowMacshadow Posts: 6
    edited 30. Nov -1, 00:00
    Your story is truly heartbreaking but at the same time it tells about courage, strength and hope. You and your Wife are FANTASTIC, CARING and THOUGHTFUL parents. I hope your daughter gets better and that by now you have a date for Methotrexate treatment.
    God bless!
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