Meet the patients: Amy Robertson
'Mr Big Thumb'
Amy first displayed the symptoms of JIA last summer – unusual bumps and swellings in her knees and toes, fatigue and lack of energy.
The situation came to a head when Amy’s right thumb swelled to and remained double its normal size. Amy’s happily assigned a character to this (Mr Big Thumb!). A referral was made by the GP to the Southampton team and whilst waiting for the appointment to come through we did our research but remained convinced that Amy had an intolerance or reaction to something.
At the appointment with Dr Leahy, a diagnosis of polyarticular JIA (juvenile idiopathic arthritis) was confirmed without hesitation. This moment will be forever engraved in our minds as we could see during Dr Leahy’s examination of Amy the lack of movement Amy had in her joints and the pain she was experiencing. Given that many of Amy’s joints were affected, an intense course of high dose steroids and methotrexate was prescribed. As parents this really worried us and we were very unsure about longer term effects.
What followed made our decision simple. One morning in early December, Amy awoke in terrible pain and was unable to get herself out of bed, come down the stairs unaided, get herself dressed and indeed, she could not lift her spoon to feed herself cereal. As parents we felt utterly helpless.
The steroids worked very well and bought enough time for the methotrexate to become effective. Amy was able to have painful joints scanned every fortnight, if necessary. This is great but to have the facility on a weekly basis would be fantastic – it is very difficult to explain to a child that she has to wait almost two weeks when she is experiencing immense pain.
The UHS paediatric rheumatology team
The following six months involved frequent trips to the team. This is when we realised how extremely fortunate we were as a family to benefit from the team’s services. We all have an expectation for paediatric staff to be attentive and caring. What we got and have with the team at Southampton is something special. We have a team who are passionate about helping children with JIA to lead full, happy lives. In those six months, we attended the clinic on an almost weekly basis – we felt guilty taking up so much of the staff’s time but they were so accommodating about seeing Amy.
The team not only provide a superb face to face service – the following are the “extras” that they go out of their way to provide;
A 24/7 helpline number or “lifeline” would be more appropriate; talks and events to inform parents and to provide the chance for families to get together, for the children to talk and where they don’t feel “different”; they put new families in touch with other more experienced families, providing them with an opportunity to learn more; they come to your child’s school class to speak to the other children about JIA; they take effort to include siblings so they don’t feel left out; they set up and run a chat forum where parents can ask questions and raise concerns.
We have been and continue to be amazed by the team at Southampton – they go over and above their call of duty for the children that they care for.