hello we are new

boosmum

Hello,
my name is Luan and my daughter Pheebe (Boo) has just been diagnosed with JIA, we only found it about 8 weeks ago and yesterday she had some steroid injections in her bad joints at QMC, so I have been told the prognosis is good as we have caught it very early, they want her to go on the methotrexate, when they have made sure she is vacinated against chicken pox, myself and my husband would appreciate any help, ideas etc that people can give, the hardest thing that I am finding at the minute is that my daughter is not yet 2yrs old, she will be next month, she cant talk very well, is rapidly learning no, I am feeling a bit overwhelmed with all the leaflets and advice that has been forthcoming, help.

Luan (boosmum)

debbieclap

Hi and welcome I had a hip dislocation which was not found until I was 18months old spent loads of time in hospital as and encouragement I never felt I missed out on anything but I am sorry to hear about Boo just love her as much as you can and accept limitations that she might have. at the moment it sounds like you have to come to terms with it and feel overwhelmed take it slow there is no rush
All the best
Debbie

page35

Hi Luan
i wanted to welcome you to this site, i have only just been diagnosed with RA myself so dont have any advice but others here will.
i had steriod injections and they did make the pain much better took about a week to work, so hopefully she will be feeling abit better soon. its also good you caught it early.
i have a daughter who will be 2 next week so very much feel for you.
all the best
keep posting on here people will help
xx to Boo

mouseymousey

Hello Luan & Boo, So sorry you have had this diagnosed its so hard when its a little person. May I say well done on finding the site. Best advice I can offer would be to join Arthritis Care - they have a whole lot of information that may be useful now and later.
with all best wishes
Moragx

mistywillow

page35 wrote:

Hi Luan
i wanted to welcome you to this site, i have only just been diagnosed with RA myself so dont have any advice but others here will.
i had steriod injections and they did make the pain much better took about a week to work, so hopefully she will be feeling abit better soon. its also good you caught it early.
i have a daughter who will be 2 next week so very much feel for you.
all the best
keep posting on here people will help
xx to Boo

Hi Luan
I'm not surprise you feel overwhelmed, it must have been a shock to have been given that diagnosis. Hopefully the steroid injections will make boo more comfortable but they don't always take effect immediately, so she may still be a bit fractious for a while. There is a lot of information to absorb, so when you see the doctor try to write down any questions that you want answered beforehand so you don't forget to ask them.
I have found this is a very helpful site whether it is to seek information or just let off a bit of steam.Also the help line on this site has some very good people on it who may be able to answer your questions so maybe you coul give them a call.
Good luck with it all and keep us posted.
Gillx

eckstardeluxe

Hello Luan, welcome to the Forum. I'm not surprised you are feeling overwhelmed, as a Mum the only comfort I got from the day I had my awful diagnosis is that it wasn't happening to one of my kids. It's very shocking and does make you angry thinking why me or us but time is a healer. When you start to learn as much as you can about the condition you suddenly realise things have to change. The more ready you are to make those changes the better you cope, in my experience. You will find some wonderful support here on good and bad days. I hope you can get some much needed answers. Take care x

Wonkylegs

HI & welcome to the forum!!

As well as the fab people on here, I think there is a special AC project for parents of children with Arthritis that I have seen mentioned on here before.

If you ring the AC helpline on 0808 800 4050 or send them an email or post on the Helplines thread, they will point you in the right direction to put you in touch with others who are in your position.

Don't be afraid to ask ...... however small or insignificant you think your question may be. You can be certain that people will have asked the same question many times before, and that others will be glad to see you ask it on here. Learn as much as you can, but try not to get too worried by the medication leaflets etc. as they can be a bit scary, but can be of great help.

Good luck!

skezier

Hi to you both,

I am so sorry you have had this news, it doesn't seem fair when someone is so young.

I hope as it has been court so early that she will respond well and hopefully it will be under control very quickly.

You probably just need a bit of time to take it all in and then it will be less overwhelming and it must be such a shock.

You all take care,
Cris

frogmorton

Hi Luan
So sorry about Boo
Glad you found us though! well done!
There are other mothers on here with little ones who have JIA, so when they log on you should get some good advice.
From me I think all I can say is (Nots QMC?? - They are really good there If so), that I am very very glad she is getting the help she needs and I guess you STILL can't give in to her 'Nos' - evn though you probably want to.
Lets hope they get it well under control and that all is well for her. You must have been to hell and back trying to find out what was wrong.
You look after yourselves too and keep posting
Take care
Toni xx

boosmum

thank you all for your kind words, I feel that I have found somewhere that we can get help and advice from and somewhere that will listen should we just want to rant, Boo is already alot better and I had forgotten what a cheeky mischeavious little girl she was becomming, but that is coming back as well, her brother will soon not be able to keep up with her again, and the dogs better watch out demolition barbie is on the prowl again!!!! thank you it's nice to know there are people out there who understand.

Luan and family

woodbon

Hello, Welcome to the site, but sorry you've had to join . It must be so hard for you, having a child with pain. The only thing in her favour is being young, there is a very high chance that new research will be able to help her in the future, as she has youth on her side . My very best wishes and love to you all, Sue.

frogmorton

Bumped up fot Tan
Toni x

frogmorton

Bumped up for worrywort
Toni x