Charlotte’s journey began in late 2016 when we noticed she had developed a limp. Initially we thought it was her shoes so went to the shoe shop and got her properly fitted. This didn’t help.
We took her to the GP and we were told that it "definitely wasn't arthritis" and to keep an eye on it. She had bloods taken and her (ESR) inflammation markers were slightly high. We took her to a physiotherapist who looked at her range of movement and suggested she had some kind of hip pathology and recommended an X-ray.
Back to the GP we went, armed with the physio’s letter and refused to budge until we had the x-ray. This, as is we now know is not surprising, came back normal. We went on holiday to Disneyland and Charlotte couldn’t manage to walk more than a few minutes without stopping. She wanted to go to bed rather than go to watch the evening light show. This was heart-breaking to see. At this point we decided to really dig our heals in with the GP. Another blood test showed another slightly high ESR so we pushed again for a referral to see a paediatric rheumatologist.
Our persistence paid off and Charlotte was diagnosed with poly-articular JIA on 9th June 2017, the same day as the Blaydon Races. Credit to the team at the Royal Victoria Infirmary, Charlotte was in the following week and had 3 lots of daily prednisolone infusions. She was bouncing after this and was trying to show us her Pilates moves on the sofa! Methotrexate was started a week or so later and administered via the spring-loaded pen.
This still causes anxiety on the days she has the pen, but the improvement is amazing. Being on various Facebook groups you tend to hear the negatives, but her legs improved from being rigid in June to being more agile in October. Her wrists had not responded as well, and she needed to have joint injections recently. She really doesn’t like needles anymore and this is one of the reasons that we asked the children’s play therapist for their help and they suggested Harvey’s Gang, an initiative run at the Royal Victoria Infirmary in Newcastle.
Harvey’s Gang is now in at least 9 hospital Trusts and is spreading across the UK and beyond. Children and families see where the blood samples end up in the lab.
Children are ‘Trainee Biomedical Scientists’ for the day, just like Harvey. They can see and meet the machines and the scientists that test their blood. They can ask questions, look at their own blood cells through a microscope and the children and families can get further information from the experts.
Harvey’s Gang tours demystify the unknown.