Hi, My girl just been diagnosed with jarthritis!

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

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

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