Keavagh

“We have had so much to take in, lots of questions and tears.  I am so very proud of Keavagh… We do not know what the future holds but I do know it won’t hold Keavagh back.”

 In August 2022, Keavagh was a happy, healthy 5-year-old. She enjoyed dancing, gymnastics, rainbows, playing with her friends, going trampolining and so much more. During a birthday party at the end of August, Keavagh had a fall. We thought nothing of it as she got up and carried on dancing.

The next day Keavagh’s knee was badly swollen. It had swollen so much that you could not see her knee cap so we took her to A&E straight away.

This was to be the start of Keavagh’s Juvenile Idiopathic Arthritis (JIA) journey.

Keavagh was originally diagnosed with oligoarticular JIA as it was just her knees that were affected. But the diagnosis was soon changed to psoriatic arthritis. (See our About JIA pages for more information on the different types of Juvenile Idiopathic Arthritis).

In Keavagh’s case, the affected joints are both of her knees and both ankles. Keavagh’s thumb nail has also been affected as nail ‘pitting’ can often be seen in psoriatic JIA.

When we first took Keavagh to A&E the day after her fall, they sent her for an X-ray and found that there was some fluid around the knee. She was sent home with ibuprofen. For the next few days, Keavagh was in a lot of pain and she struggled to walk. So we went back to A&E where she was examined again and was referred to orthopaedics. Doctors mentioned it may be reactive arthritis. This is when you have not been well and the body reacts, but it will settle down after 6 weeks.

Orthopaedics examined Keavagh and there was still no mention of JIA. She was then referred to physiotherapy. This was just a telephone appointment. Keavagh was given exercises to do. Keavagh’s mobility was getting worse and she ended up being off school for quite a few weeks. Not seeing her friends made Keavagh sad. Some of her school friends got her cards and presents which cheered her up.

As things were no better, we went back to A&E and were finally referred for an MRI scan. The orthopaedic doctor called us with the results. He said it is definitely not arthritis and that it was the ACL and MCL (ligaments in the knee) that were damaged.

During the physiotherapy appointment the next day, Keavagh finally got crutches to help mobilise. When we explained to the physio that the orthopaedics doctor had told us it was the ligaments, the physiotherapist instantly knew there was more to it. He ran upstairs to the rheumatology team and the rheumatologist came to see Keavagh. The next day Keavagh was diagnosed with JIA. The whole process from the first appointment until that day was 8 weeks. We were lucky that the physiotherapist knew that children could get arthritis too and asked the rheumatologist to have a look. We know that the diagnosis process can take a lot longer for some children.

Keavagh told us “I felt worried and scared” about her diagnosis, but we are glad that she hasn’t had any flare ups of her joints since starting treatment. Keavagh takes methotrexate in the liquid form. It was originally as an injection, but it ended up being far too emotional and mentally draining for her. She has also had steroid injections into both knees and ankles. She has had steroids through an infusion and tablet form as well.

Earlier this year, Keavagh was diagnosed with uveitis. This came as a shock to us as her vision was fine. Uveitis is inflammation inside of the eye so it can be very hard to detect. That’s why the check-ups with the eye team are so important. Keavagh was put on 3 weeks of steroids to be taken orally and started another medication called Infliximab given in hospital as an infusion.

We felt gutted. It’s hard to put into words when your 6-year-old has gone through so much already then to be told she has uveitis, and that it can lead to glaucoma and blindness if it isn’t treated.

Before Keavagh’s diagnosis, she was so tired in the mornings. It would take her until lunch time to get up and then it was only to sit on the couch. Lack of appetite and losing weight was another challenge for Keavagh at the beginning of her JIA journey. She lost a lot of muscle tone too, especially in her legs. But with the right medication this is getting better. She is back at dancing and doing PE and that is definitely helping. Keavagh’s weight is gradually going up, but she can sometimes feel self-conscious. Keavagh finds it hard to sit on the floor, and we’ve noticed that this is something a lot of kids with JIA can find difficult if it is the knees that are affected.

Having the support of friends, family, her teacher and all the medical staff has helped not just Keavagh but all of us (Mum, Dad, and brother too). Overall, Keavagh is doing great - except around needles.

Keavagh attends Art Therapy with The Teapot Trust. This is helping her express feelings and gives her her own space to talk outside of the family.

As a family we have asked so many questions, emailing our nurses, who have been amazing, being supported by SNAC in Scotland and receiving a Little Box of Hope from Juvenile Arthritis Research. Having things like this is amazing - She was delighted with her Little Box of Hope. It has helped us know that we are not alone. 

I feel we have been on a rollercoaster ride since August. On that day she was first diagnosed we all felt very alone not knowing what JIA was. We have had so much to take in, lots of questions and tears.  I am so very proud of Keavagh. She has been an inspiration with her resilience and ability to cope.  She just gets on with it and does not complain. Don’t get me wrong, every Saturday has been horrific. Saturday is injection day for us. Watching your daughter run and hide under her bed screaming “please don’t, please, I don’t like it” whilst in tears is heartbreaking. Keavagh has got better when getting the canula put in when getting bloods or infusions as she knows the magic cream works (if you know, you know).

We do not know what the future holds but I do know it won’t hold Keavagh back.

Keavagh made a booklet to share with her school about JIA and she also wanted to set up an Instagram page to spread awareness at @mrsnacandkeavaghsjiajourney

If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkJIA.org

For support at school, please visit our Parent Zone. Schools can request an information toolkit to support children and young people with JIA in their setting at www.jarproject.org/toolkit 

Many of the resources we have developed can support children and young people at school and with explaining their condition to others such as our "I have JIA" cards. You can access these here.

For support with Mental health and needle phobia, please see our Mental health and wellbeing page here.