On the Radio at Breakfast :)

http://www.964eagle.co.uk/news/local-news/1180258/video-a-three-year-olds-arthritis-journey/

Our Radio Bit

Ooh a quiet few minutes!

Well, Imogen is going to be starting Enbrel in the near future. Hopefully in the next week or so! This drug can take 4-6 weeks to work effectively, but she will be taking it alongside MTX for the moment.

Physio would like to cast her foot again. She was in casts for a week previously, but she then went into flare again so they weren't as effective as hoped. It will only be one leg this time, but for two weeks rather than one!

We did some filming with local radio station 96.4 The Eagle on Monday. That will be going out on their breakfast show tomorrow morning which is quite exciting!!!

We have eye tests at the end of the month. Imogen is thankfully getting better as time goes on with these. Hopefully again we'll get a clear result and then not have another for three months.

After that appointment, I actually have nothing in the diary for the whole of Feb!!! Which is amazing, although it will change and we'll have at least one.

On the 6th Feb, it will be a year to the day that Imogen was diagnosed! Where has that gone? It seems mad. I remember that day as though it was yesterday! We've been through so much this last year, and become a stronger family unit for it. I never thought I'd be doing injections weekly and it seeming the most normal thing! Hospitals seem like our second home, and we know most of the nurses at our local hospital by name!


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Raising Awareness

So, last year:

• I was a Social Media Champion for Arthritis Research UK
• Imogen and I appeared on Daybreak during National Arthritis Week
• I did a radio interview for BBC Sussex and Surrey for National Arthritis Week too

This year I want to do even more!

So far I have done some filming for local radio station 96.4 Eagle. As soon as it's available I will post a link.

I have also been approached by NRAS to become part of their Parent Panel when they revamp in the summer.

Exciting things are afoot this year already!!!

The Reason for the Forum

• 
  
• My daughter Imogen was diagnosed with Polyarticular Juvenile Idiopathic Arthritis in Feb this year. She wasn't even three years old.

  I remember feeling so alone after diagnosis. I didn't know anyone else who had a child with this disease and we were literally just given a diagnosis and shoved out of the door by the local hospital. One of the first things I did when we were settled at home was Google, to see if there was anything out there for parents with children who have arthritis and other than places who gave lots of information, there wasn't much where I could discuss things with other people going through the same things.

  I have talked to a few arthritis parents since and everyone has said the same. There are no real places to go to talk to others in the same situation.

  So the idea of Our Arthritis Journey was born. I believe there is a real need for somewhere to share our experiences, get advice and support if we need it, and also somewhere for the younger sufferers to have somewhere to chat and talk to others like themselves.

  I have been on many forums throughout my life dealing with many different things. I decided that having a forum would be a good place to start. That way people could join, see that they weren't alone and that there were many other people going through the same thing.

  The forum opened yesterday (16.12.13) and we have 5 members so far. Eventually I would love this to expand and be a great community for people to come and discuss anything, from the weather where they are, to the next step in treatments for their child. Also it doesn't just have to be for parents, it can be for grandparents, aunts, uncles, siblings or anyone else affected by the bombshell that is JIA. Because the one thing we all know is that JIA does not just affect the child, it has a knock on effect for the whole family.

  http://ourarthritisjourney.proboards.com/ http://imogensarthritisjour.wix.com/ourarthritisjourney

I'm Sorry

I've neglected the blog :(

Imogen had over 20 joint injections on Monday 9th at Great Ormond Street Hospital. That was her third lot.

We are waiting for an enbrel referral so hopefully that will happen soon and we will get an idea of when that will be started. They have also upped her MTX to 12mg. Sadly Enbrel is another injection, so not much fun for poor moos!!

However she is still smiling, had a speaking part in her xmas play (extremely proud parents moment) and all in all she is doing ok.

I'm still spending time doing  a lot of calling around to hospitals to chase things up which is annoying!
Edited to add: We have a website and a forum now too
http://imogensarthritisjour.wix.com/ourarthritisjourney
http://ourarthritisjourney.proboards.com/
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1 Hour 30 Minutes

Doesn't sound like very long does it?

90 minutes, 5400 seconds.

It's the longest time ever when your child is under general anaesthetic. It's almost like the clock goes backwards.

Imogen had 7 joint injections done today, on top of having an infection (which we didn't realise until her bloods came back afterwards)

She is covered in plasters and feeling very sorry for herself.

I hate arthritis. That is all

Our Story

On Sunday 3rd Feb, Imogen had gone to my mums for the day. Some time in the afternoon, my mum rang, and asked if Imogen had hurt her ankle at all as she had been limping and it was quite swollen. We hadn't noticed if she'd fallen over or anything to cause it. 

Once mum had dropped her off, we had a look and the ankle was huge! It was also warm to touch. So off we went to our local A&E Dept, where they told me it was probably just a sprain and to come back in 48 hours if the swelling had not gone down.

Cue 48 hours later, by which time Imogen had a swollen wrist as well. We went back up to A&E to see if they could do XRays to see what was going on. Xrays showed no breaks, so we sent back to the A&E dept to wait for the Doctor. We were then told that they thought it was possibly Arthritis and that she'd be transferred to the Children's Ward so see Doctors up there.

A Doctor came in to see us and looked at the wrist and the ankle, she also noticed that since we'd been at the hospital, Imogen's knee was starting to swell. They wanted to keep her in overnight for observation and high doses of Ibuprofen to try and reduce the swelling.

The next day we saw the Consultant who took bloods for numerous tests to try and diagnose Imogen. Once these bloods came back we had a definite diagnosis of JIA (Juvenile Idiopathic Arthritis) They thought to begin with that it was Oligoarticular but as more joints became affected it was switched to Polyarticular.

So that's the beginning of our story!

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