Kelly & Amy’s Story

Amy DOB: 14/06/2006

At the end of September 2008 Amy woke one morning not able to walk and complaining of leg pain. We rushed her to the local GP, who sent us straight to A&E to see the paediatricians. Amy had bloods and urine done and x-ray and then was admitted for further tests.

We were bricking it at this point – but it turned out to be “Reactive Arthritis” (ReA) an autoimmune condition that develops in response to an infection in another part of the body. Amy was prescribed ibuprofen and paracetamol and sent home. We hoped this condition would go away within 6 months to 1 year – great!

But doubt still nagged at our minds, and with Amy waking nightly with leg pain I returned to the doctor to beg Amy had further tests

Our GP tried his best to reassure us this was textbook Reactive Arthritis and we had nothing to worry about – but humoured us and arranged for the tests. An appointment was made for Amy in the Rapid Access clinic at the local hospital where we attended.

At the Rapid Access appointment Amy was examined and I explained that the pain had moved from her right to left knee, and then the Dr checked Amy’s heart. His words were, “Amy has a slight heart murmur – I just need to go and confer with a colleague”

Then on his return told me he wanted to admit Amy for further tests, but tried to reassure me that the heart murmur was nothing – but of course it was already in my head – there was no taking it back!!! Up on the ward another doctor managed to convince me that the heart murmur was nothing – most children have them un-noticed and un-eventful

He did however tell us that Amy doesn’t have Reactive Arthritis but Juvenile Rheumatoid Arthritis. We didn’t yet know which type Amy had, all we knew so far was that she was Rheumatoid Negative.

Amy went to her first Physio soon after as she struggled to walk as her knees were stiff and painful and was on Ibuprofen and Paracetamol 4 times a day. She still woke 2 or 3 times a night in pain. Amy’s type of Juvenile Rheumatoid Arthritis was diagnosed as Polyarticular Juvenile Rheumatoid Arthritis, which affects both of her knees, ankles, wrists and elbows.

In December we took her to Bristol Children’s Hospital, to see the Paediatric Rheumatologist for our area, who was brilliant and has a Rheumatology Nurse who I can phone to ask questions or talk to whenever I need.

It was decided that Amy would return to Bristol to have steroid injections in all her affected joints – this needs to be done under general anaesthetic for children and Bristol is the nearest Children’s Hospital to us. Between Christmas and New Year we returned to Bristol Children’s Hospital, where Amy received steroid injections in all affected joints – wow her symptoms melted away and it was like it had never happened!! Amy even started going to Ballet, which she loves. She was also started on a course of oral Methotrexate.

All had been going great, until the April/May 2009 Swine Flu scare when I was advised to stop giving Amy her Methotrexate. After a 6 week break in this medication I then spoke to a different member of Amy’s Rheumatology team, who had no idea why we had been told to stop Methotrexate and told us to restart it.

This 6 week break caused Amy’s Arthritis to flare back up and her symptoms started creeping back, along with a new diagnosis of Uveitis in both eyes. This flare up began in June 2009 and we had a difficult few months with weekly appointments to the Orthoptist to monitor her Uveitis and some weeks of eye drops every hour in both eyes, and then worrying side effects from the eye drops that needed further eye drops to correct!!

In August 2009 Amy returned to Bristol to have the steroid injections again, and was put on a 10 day course of oral steroids for her Uveitis and is due to receive her weekly Methotrexate by injection instead of orally – I eventually learned how to give Amy her injections at home myself.

Like before, Amy’s Arthritis Symptoms melted away but her Uveitis has been up and down and Amy still hasn’t been able to completely stop her eye drops (Lotemax).

Since writing this story, OV is happy to reveal that Amy’s eyes are now quiet, and she is in the process of a slow taper off steroid drops.

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