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Hi, My girl just been diagnosed with jarthritis!

mandy13mandy13 Posts: 11
edited 24. May 2010, 13:33 in Say Hello Archive
Hi,

Just looking to introduce myself and say i would be very grateful of any advice or support that anyone can provide me!

My little girl, Karys is 3 and after being unable to walk for 9 whole weeks and numerous visits to our GP, Health visitor and hospital and what seems like a million tests she had been diagnosed with juvenile arthritis. This was a week past on Tuesday so 9 days ago.

The hospital have advised me that physiotherapy would commence this week and that they would be sending me out information about Karys' condition to inform me fully of what it to expect and what happens next. After calling both the physiotherapist and hospital on Monday i am now seeing the physio on Wed next week and still waiting for the information from the hospital!!!

Also the hospital advised we were being referred to Yorkhill (Childrens hospital) who would treat Karys by giving her steriod injections into her legs. They advised hopefully before we go on holiday which we go three weeks on Monday. To date we still havent heard from them.

At the moment i just feel i still do not have a clue whats going on and i have no control what so ever. I seem to be waiting for someone to write or call me with regards to this. Karys is still in a lot of pain and it is just such a shame. She has been on naproxen for four weeks now which has slightly improved her pain but still only being able to shuffle about our house and cant do any sort of walking outside for any length.

If anyone has similar experiences i would be gratefully appreciative.

Thanks alot!

Mandy

Comments

  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Mandy, so so sorry to hear about your little girl. I can't imagine what it must be like for her - and for you having to see her struggling. I have no experience myself of juvenile arthritis, but I am sure there are others on the forum who do and who will be able to give you the benefit of their experiences. Not sure if you have discovered the "publications and resources" section of this website but I have just looked and there is a publication available to download for parents whose children have been newly diagnosed and this might give you some of the information you need. Sorry I am not technical enough to paste the link into this message but if you click on the “Publications and Resources” link at the top of the page and type "juvenile" into the search box you will see a list of publications. Also the Arthritis Care Helpline are a great source of advice – they can be contacted by phone (tel no at top of website) or by email.
    In terms of getting treatment moving, sad to say I think you will have to keep on chasing. I think, because hospital depts are so busy and short staffed these days, they do seem, in my experience to work on the basis of "who shouts loudest". I have found that speaking directly to the secretary of the consultant/person doing the referring and asking them to follow up and phone you back to tell you what is happening is often a good way to move things forward. That way they do the chasing and not you!
    If you re-post your message on the “Living with Arthritis” forum more people will see it – that’s where people usually look and you will get more replies that way.
    In the meantime, welcome to the forum and hope we can help to give you some support.
    Love Tilly x
  • mandy13mandy13 Posts: 11
    edited 30. Nov -1, 00:00
    Hi Tilly,

    Thanks so much for your reply i will also post my message where u suggested.

    Thanks for the suggested literature im going to search that next now.

    Its so scary at the moment as i just dont know much about it all at all apart from Karys is in a lot of pain and also is more tired than previously.

    Ive got the physio on wednesday so hoping she can answer some of my questions and also if i still have nothing from hospital on monday i will phone them again.

    Its hard trying to do everything whilst working full time, karys normally goes to nursery but i have had to juggle alternate child care from my family until we firstly work out what treatment and how effective it is going to be because i honestly dont think full time nursery care is going to benefit her. My reasons being there are lots of other children who are equally entitled to the same amount of attention as karys and the ratio at her age is like 3 adults to around 20 kids and i just feel she needs more help with simple things like going to the loo or moving from one side of the room to another.

    Sorry for ranting on got 1 million things going through my head!!!

    Thanks very much for getting back to me!

    Mandy xxx
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    mandy13 wrote:
    Hi Tilly,

    Thanks so much for your reply i will also post my message where u suggested.

    Thanks for the suggested literature im going to search that next now.

    Its so scary at the moment as i just dont know much about it all at all apart from Karys is in a lot of pain and also is more tired than previously.

    Ive got the physio on wednesday so hoping she can answer some of my questions and also if i still have nothing from hospital on monday i will phone them again.

    Its hard trying to do everything whilst working full time, karys normally goes to nursery but i have had to juggle alternate child care from my family until we firstly work out what treatment and how effective it is going to be because i honestly dont think full time nursery care is going to benefit her. My reasons being there are lots of other children who are equally entitled to the same amount of attention as karys and the ratio at her age is like 3 adults to around 20 kids and i just feel she needs more help with simple things like going to the loo or moving from one side of the room to another.

    Sorry for ranting on got 1 million things going through my head!!!

    Thanks very much for getting back to me!

    Mandy xxx

    Mandy, i am so sorry to hear such bad news........i hope everything goes well for her (and of course, the rest of you). The best advice i can give, is read and learn because it will be a bumpy road, but with a well prepared family unit you will be able to help Karys a whole lot better than unprepared.

    try and stay positive, yes she is young, but she will adapt very very quickly

    i pray you are all safe and well

    highest regards, chris
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi again Mandy. Hope you found the literature and/or managed to speak to the helpline. Hopefully as you get more info things will feel slightly less scary - at least you will know what you are dealing with. Please please don't apologise for "ranting"! We all need to be able to let off steam when circumstances are so difficult - and you will find plenty of us doing it here - and plenty of really great support from people who have some understanding of what you are trying to deal with. Good luck with physio on Weds - will be thinking of you - and if still no joy from hospital by then, maybe physio can help you to follow up?
    Please do post again on LWA forum to let us know how things are going - and remember that you are not on your own with this - we're here to support where we can and just to listen if you need to talk.
    Love Tilly x
  • valvalvalval Posts: 15,897
    edited 30. Nov -1, 00:00
    mandy feel free to come on and let off steam we all do from time to time and you must feel you have been hit by a brick wall get you gp to hurry hospital along good luck val
    val
  • mandy13mandy13 Posts: 11
    edited 30. Nov -1, 00:00
    Hi Guys,

    Thanks for all your support!

    Karys had a rough night last night up in agony during the night however today she has woken up full of energy and is having a great day so far :)

    Will keep you all posted!

    Thanks so much!

    xxx
  • barbara12barbara12 Posts: 20,906 ✭✭
    edited 30. Nov -1, 00:00
    Hello Mandy
    I just want to lend you my support, it must be so scary for you the not knowing.
    I really feel for you, and little Kary, I do hope you hear from the hospital very soon, and she can start her treatment , and begins to feel some relief.
    You have all us lot to talk to now, so don't bottle things up.
    If you put a post in the young people forum , I am sure you will get lots of answers
    Please let us know how she goes on lots of hugs to both of you ((((((()))))))
    Take care
    Love
    Barbara xx
    Love
    Barbara
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