Would love to speak to other parents of kids with JIA

Mumps

Hi, my 2 year old daughter has just been officially diagnosed with systemic JIA. She actually got ill for the first time a year ago, she was covered in a rash with high temperatures. Her blood showed inflammation but they couldn't find any on her joints. After about a month in hospital she appeared to improve & was sent home. A year later & she was ill again - this time with inflammation in every joint & her fingers.
She copes fantastically with it, and her resilience is amazing. She doesn't realise she has an illness & I think that is the best thing.
I really just wanted to talk to other parents and find out what to expect. At such a young age it is difficult for her to explain where & when she hurts.
The diagnosis has devastated us - I think because we thought she was clear of it.
I'd also be interested to know if anyone had ever used dietary changes? My docs dismissed the idea immediately saying that only medicine will work but I've read quite a lot about avoiding certain foods. However, at 2 years old - cutting out dairy & red meat is not really a great option.

dreamdaisy

Hello Mumps, I wish we hadn't met but I have been monitoring your post and see that that no-one has replied as yet; I am sorry. :oops:

I am not a parent but I was a very poorly child and remember that my Mum was my rock. My Pa was around when he could be but Ma was there, day in and day out and she supported me through a difficult childhood; I didn't have arthritis then, just eczema and asthma but this was in the days before creams and inhalers. It wasn't easy for either of us.

I am sure that you appreciate that other parents on here are busy people but I will be here to support you as much as I can. I am not a parent but I will do my best to help you as much as I can. I am aware that sometimes the needs of the parents are lost due to the focus on the child: I recall my Ma telling me that, when I was nine, a new GP asked after her and she blubbed (which was so not my Ma, she didn't even cry when Pa died after 57 years of a very happy marriage ). I hope that parents will turn up soon, because they are at the appallingly sharp end of this malarkey but, if not, I hope I'll do.

I wish you both well. DD

Mumps

Hi Dreamdaisy

Thank you so much for your response . I find it hard to get on here to check my own post, so I'm sure other mums of little ones will be the same.

Yesterday a Great Ormond Street nurse sat down with me to tell me about the two year care plan. She didn't really go in to the emotional side of anything but she did give me a stack of leaflets - a few of them specifically about being a parent of a child with JIA. I think it was good to have that chat - for the first time in the process somebody gave me the chance to ask all of my questions. I also realised that some of the things I have been saying for the past year are key factors but have been dismissed time and time again by drs.

As the mum I see it is as my job to be the rock too. Luckily my other half and our families are very supportive, but I can understand how easy it is to take it all on & never tell anyone how you are really feeling. Especially in your mum's generation.

Thanks again

Mummy-mumps (the full 'name' that my daughter calls me!)

dreamdaisy

What a lovely title your daughter has granted you - it's very sweet but I'm sure you'll understand if I stick to Mumps.

When you talk about doctors I suspect you mean your GPs? GPs know a little about a lot but many won't have come across a little one with auto-immune arthritis - they tend to associate arthritis with the elderly (I know some of mine have which delayed my getting access to treatment). You are now in the right place receiving the right care (from doctors who know a lot about a little) but you are on a very steep learning curve and I hope people on here will be able to help with information and support. Not many forum members look in on here - I think fear keeps them away - but I do, and I will keep an eye open for you. I never thought about the strain on my Mum when I was young but she told me about it later in life when I was older and could understand more. I was lucky in that I was an only but that also brought its own complications - for six months or so of the year we couldn't escape each other!

Leaflets are a useful source of information but there is also the Helpline on here, it's a free call and the number is on every page. The Helpliners are good listeners and will be there to support you, OK? Talk to your families too, arthritis spreads its tentacles to everyone in the social group involved. It's a nasty beast but it can be dealt with and put in its place. Take care, keep in touch and I wish you all well. DD

Annasmum

Hi,
I have only just stumbled across this forum. Hope you are well and coming to terms with your daughters diagnosis. It is tough in the early days, but I also found it a relief to finally have a diagnosis after a long time of no-one knowing or understanding what was wrong. All sorts of terrifying scenarios go through your thoughts during that time!. My daughter is 3 now, and has poly-articular JIA and anterior uveitis. In the main now we are lucky I that her joints are under control, but it is the uveitis we are struggling with at the moment. She has recently changed care plans because of this.
We haven't investigated any dietary changes (as you say it is difficult at this age) or other alternative medicines at the moment but it is always something I wonder about investigating.
Feel free to get in touch if you need to chat
Christina

sararichards

Hi Mumps

My daughter is 6 now and was diagnosed with JIA in May last year. She's also had severe pan uveitis in her right eye.

From what I know, Systemic onset arthritis is very different to JIA so there will be differences it treatments and the flare ups are different, but either way it can be a difficult and lonely journey.

There are some good organisations out there and some good websites, you need to do a lot of learning and reading up so that you can understand the treatments and issues. There are some great facebook pages also - have a search around on facebook.

for uveitis - olivias vision and uveitis.org are brilliant websites.

Hope you are ok, there are lots of other parents who are going through what you're going through, you're not alone.