The Reason for the Forum

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• 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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How Things Have Changed!

Well since I last posted, things have changed a lot. Imogen is happier and much more comfortable! She still has bad days, but there are less of them at the moment.

She still has active arthritis in her wrist, knee and ankle - however it has improved greatly from where we were.

We go back up to GOSH on the 28th to see the Consultants there, and I think they will probably up Imogen's MTX slightly to see if that can get rid of the active arthritis.

She had a joint injection under general anaesthetic last week! Her wrist, the worst joint, was swollen and sore, so they decided to give a steroid injection under GA to help. It was horrific for us, however she was in and out of theatre within about 20 minutes. We spent less than four hours in the hospital!

So all in all things are certainly better! All I can say, is it's about time! x

Wow!!

Well, after the blood tests, canula insertions, stupid amounts of steroids being pumped into my baby girl's body, there has been a noticable difference.

When they do Imogen's blood tests, they test the ESR rate:

"The erythrocyte sedimentation rate (ESR), also called a sedimentation rate or Westergren ESR, is the rate at which red blood cells sediment in a period of one hour. It is a common hematology test, and is a non-specific measure of inflammation. To perform the test, anticoagulated blood is placed in an upright tube, known as a Westergren tube, and the rate at which the red blood cells fall is measured and reported in mm/h.

Since the introduction of automated analyzers into the clinical laboratory, the ESR test has been automatically performed.

The ESR is governed by the balance between pro-sedimentation factors, mainly fibrinogen, and those factors resisting sedimentation, namely the negative charge of the erythrocytes (zeta potential). When an inflammatory process is present, the high proportion of fibrinogen in the blood causes red blood cells to stick to each other. The red cells form stacks called 'rouleaux,' which settle faster. Rouleaux formation can also occur in association with some lymphoproliferative disorders in which one or more immunoglobulins are secreted in high amounts. Rouleaux formation can, however, be a normal physiological finding in horses, cats, and pigs.

The ESR is increased by any cause or focus of inflammation. The ESR is increased in pregnancy, inflammation, anemia or rheumatoid arthritis, and decreased in polycythemia, sickle cell anemia, hereditary spherocytosis, and congestive heart failure. The basal ESR is slightly higher in females."

Now last time this was tested on the 2nd April, Imogen's ESR was 97! The normal range for her age is between 3-13. She was tested again on the 30th April and her ESR is now...11.

Well within the normal range! So obviously we are on the right track and things are getting better. Her White Blood Cells are still a little high but with time hopefully they will come down a bit more.

Happy day :)

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Buzzy

Hey all :)

Ordered Imogen's Buzzy this morning :) We've gone for the LadyBuzz with the Bee-Stractors to hopefully make things a little easier.

Hydrotherapy did not go as well as anticipated. I think Imogen is afraid of water. I'm not sure why, but there is definitely something there. The Hydro room was boiling!!! I could have quite happily stripped and got in the pool too!! Riley ended up with just his jeans on in there as it was just overpowering!
We're hoping as she is going to be having weekly 30 min sessions that we can overcome this fear and we are going to take her swimming every weekend as a family to hopefully conquer it.

MTX day tomorrow. Community Nurse is coming out at 2pm to do the injection and fill in all the relevant paperwork. I'm so sick of paperwork! I seem to spend my life filling in forms for something or the other!!

Trying to contact the Consultant's Secretary today as well, as when Imogen gets her next blood tests I would like them to check her immunity to measles. She had the original jab at 13 months, but was due a booster in a few weeks. But due to MTX she cannot have any live vaccines. I just want to check that she's at least a little bit covered!

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