World Arthritis Day 2019 - Four and a half years on from diagnosis

12^th October is World Arthritis Day. I thought it would be a good time to give an update on Miss T and where we are four and a half years on from a diagnosis of Juvenile Idiopathic Arthritis.

What was first a shock and ordeal to deal with has now become our ‘ordinary’. Some weeks we have hospital appointments almost every day - yet that is still within our 'normal'. The weekly MTX injection is part of the routine (although much dreaded), and we no longer worry about missing certain medications because they are SO part of the routine now that it's hard to forget them. Miss T can remember her medication list and physio routine to update each of her doctors herself.

Physio is an ongoing struggle because each time we lapse (and I say ‘we’ because it really is a family team effort to stay motivated and to ringfence the time to do the exercises each day) her muscle strength deteriorates and it is hard to keep up the exercises day in, day out, all through the year. Over the summer holidays with our routine being different we’d missed doing the exercises for a while and it was clearly evident when she went for her physio appointment at the end of the summer. They score the muscle strength out of 30 and hers had dropped to 18 out of 30. She’s worked really really hard over the past few weeks to improve that and has managed to get it up to a score of 23. She is now up to 30 repetitions of 4 key targeted exercises using ankle weights of 1.5kg on each leg. Yes it’s hard work. Yes it can get pretty boring. And yes there are days she really wants to just get to bed without having to do her exercises but she also understands just how important it is to do them.

Over recent months ongoing investigations into the mystery left foot that has been going on since summer 2017 have ruled out neurological involvement so that is a relief although none of the plethora of healthcare professionals that she has seen have been able to give a definitive answer of what has happened / is happening to that foot for it to have become arched like that and smaller in size than the other foot. A podiatry appointment in November where they will take measurements of the foot again will hopefully help us understand whether the size difference is improving, staying the same or worsening.

At the moment remaining on her weekly methotrexate seems to be the preferred option. Whilst there is no definitive test that can be done to identify whether a child is in remission from JIA, at Great Ormond Street hospital they do an MRP blood test which is used as an indicator of how likely it is that the child will flare if coming off MTX. Frustratingly it can take 3-4 months to get the results of this blood test. When they first did the MRP test for Miss T her score was over 15,000 (they can only measure up to 15,000). Anything over 4,000 indicates a high risk of flare. They repeated the test in Spring this year. Her score was 5,000. So at her next appointment I’m anticipating that they may wish to discuss whether it is worth the risk of trying to come off the medication or to stay on it longer.

Many people still associate arthritis with the elderly. Whilst it is not common amongst children, it is still important to be aware that children CAN get arthritis. Increased awareness leads to faster diagnosis and treatment and better long term outcomes for children with JIA.

This world arthritis day I’ll be spreading the word on social media that children get arthritis too with a little help from Kipo. Kipo is a monkey who has JIA. He is the main character in a lovely storybook written by parents of children with JIA – originally in Israel. 

Miss T proof-reading the Kipo book about Juvenile Arthritis

They’ve kindly given the Juvenile Arthritis Research project permission to translate it for a UK audience and to print and distribute the book in the UK. At this stage it is going to be made available via the A Little Box of Hope initiative which has been designed to provide information for the families of newly diagnosed children. It is currently being piloted in one area with a view to eventually roll it out to every newly diagnosed child. Ultimately it would be great if the Kipo storybook could be made available to every child with JIA who would like one. So we are thankful to all the supporters and volunteers who have made the pilot possible with their fundraising efforts - we just need to keep going to be able to reach every family who needs it! 

 

JAR Project's A Little Box of Hope initiative being piloted for newly diagnosed families

Please do pop over to Juvenile Arthritis Research's  social media pages and share, retweet or re-post one of their messages to help spread the word this World Arthritis Day that children get arthritis too! 

When I look back at my early posts from 2015 when Miss T was first diagnosed, I can sense the urgency and passion I felt in trying to raise awareness that children get arthritis too. That hasn't changed. The need is there more than ever. Juvenile Arthritis Research have developed a resource, the #ThinkJIA campaign, in conjunction with leading health professionals - Whether you are a parent or carer, pre-school or school, or front-line health professional, you can find out more here: www.thinkjia.org

Please do pop over to either twitter, facebook or instagram and give the image of Kipo the monkey a share to let others know that children get arthritis too! Thank you.