my 5yr old

maz261979

Hi

My name is Maria and my 5yr old has been diagnosed with JIA and it has been the hardest 3 mnths of our lives.

I would like to chat/meet other parents as I feel alone.


Many thanks

Maria

worriedmum

Hi Maria,
Glad you've found this forum, though sorry that you've had to.
I also have a five year old with JIA and associated Uveitis. She was daignosed at age 2.
I would be very happy to chat to you and hopefully offer some support.
Why don't you tell me what's happend so far and how things are going now, meds, tests etc and I'll try to talk you through what to expect next and help you cope with your vast array of emotions. I'm sure there will be others along shortly who will do the same. Its a great community and we gather here when we feel the need for some advice support and theres always somebody who will help with the benefit of experience.
Get back to us when you can and I'll check in again later.
Best wishes
Sam.

maz261979

Hi Sam

Alisha has JIA and Uveitis, we are under Great Ormond Street hospital. Alisha is currently on Methotrexate weekly injections and predisnol and eyes drops.

It all happened so fast, Alisha had trouble with her legs 2 and half yrs ago and they said that it was fluid on the knee. The same thing reappeared again late september and since then it has been a whirlwind. We were having regular eye check up at a local opticians and not once did they pick up the Uveitis until i took her to specsavers were the lady that was doing the eye test said straight away see has uveitis.

Not sure what else to say, we are angry, shocked, upset and not really talking about it(our way of dealing with things).

Thanks Sam

worriedmum

Hi Maria,
Ok, first things first - you're not alone. The shock is emmense, you feel overwhelmed, scared, responsible even, though clearly you're not. You are experiencing a range of emotions which are totally normal, though at times you'll question that.
Second, talking is good! No, scratch that - it's essential. You need to keep talking to eachother, to the people around you who can offer support etc. Don;t be afraid to tell close friends and accept their practical help when they offer, like lifts to the hospital, an evening out to chat about it over a glass of wine etc.
Third - get educated. Read as much as you can about JIA and Uveitis. Question what you are being told if it doesn't feel right - as long as you do it in the right way, no-one will mind. You are the only one who'll fight for Alisha. You're her Mum, it's your job and sometimes you feel a bit abandonded and lost in the system. Don't worry about nagging the professionals occasionally, in order to get the help and supprt she needs.
It's too important.
I am very open with Freya about her treatment etc, so see how Alisha copes and try to explain everything to her in an age appropriate way so that she knows she can ask you questions and she can trust that you are making the right decisions for her. One day she'll have to take ownership of this condition herself, but until that point, you will have to make decisions you don't feel comfortable with. Don't spring any surprises on her, make sure she knows what might happen at each appointment a couple of days before so she can be prepared and this will make her more compliant. Also, let he know it's ok for her to talk to you about how she feels about it all, or someone else if that's what she wants.
Take time out every now and then to allow yourself to fall apart. It helps you to come back stonger. You'll need to release your feelings every so often to enable you to cope. Just don;t let her see it.
If I can answer any specific questions, just ask, and i'll try. Let me know how things are going and try to enjoy Christmas with your little girl.
I'll be thinking of you both.
Sam. x x