University Hospital Southampton NHS Foundation Trust

Meet the patients: Phoebe Elliott

Phoebe's arthritis story

Phoebe was four years old in September 2013. She is a beautiful, happy little girl who suffers from JIA.

It all started in February 2011 when one morning Phoebe woke up and could not walk. She couldn’t articulate what the pain was or what the problem was but just said she could not walk. She would limp, crawl and hobble about. We noticed it particularly after sleeping and rest times. Initially we put it down to her being in the ‘terrible twos’ and wanting to be carried and being stubborn about being made to walk etc.. but we quickly noticed that her knees looked hot, red and swollen and that she didn’t seem well in herself – she was pale and not full of her usual beans. 

We went to the GP three weeks after the limping started having seen no improvement. The GP quickly ruled out anything such as pulled muscles and growth pains and referred her to have a leukaemia test. It was an incredibly worrying and stressful time for all of us not knowing what was wrong with our baby girl. 

Thankfully the test came back negative for leukemia and at this point we were referred to our local paediatrician for further tests and investigations. He immediately suspected arthritis particularly when I said that it seemed like she needed ‘oiling’ like the tin man in the Wizard of Oz! She had stiff, swollen painful joints and her bloods showed anaemia which is common in children who suffer from JIA. My husband, Mark , and I were in shock that our little girl could have arthritis – a disease we had only ever associate with old people.

Initially she was put on naproxen and we started to see the opthalmologist every two months and also the physio. Although her energy levels improved, her knees were still hot and swollen. In September Professor Clarke saw a level of deformity in her legs that he was not happy with and she was referred for steroid injections in Southampton.  At this stage we also went to Great Ormond Street Hospital (GOSH) to get a second opinion – they also reached the conclusion that Phoebe had JIA – in less than four joints. At this stage it was spreading into her ankles. It was a very difficult time for us as parents – the anxiety of it spreading and not knowing what the future would hold. We also found that at GOSH we were constantly being seen by different doctors and nurses which made the situation all the more traumatic as we had to keep going over the same old ground every visit as we would always be greeted by a different face.

By December 2012, ten months on, Phoebe had arthritis in seven of her joints and the doctors at both Southampton and GOSH reached the same conclusion that Phoebe had extended oblio JIA. At this stage we made the decision for Phoebe to be treated at Southampton General – we felt that the team there were approachable, caring, personable and at the forefront of getting on top of this disease. We found Alice and Sarah as a team efficient, positive and ever smiling and they gave us hope that we would find the right solution to dampen down the ever spreading arthritis. We also found the Facebook forum welcoming, insightful and a comfort to know that other people across the UK were going through similar experiences with their children. We had felt very isolated on our own in Guernsey with no other parents to talk to that knew exactly what it felt like to have a young child with arthritis. Suddenly there was a whole new world of people that we could talk to when we needed them. We felt a sense of community, and although we do not use the page often, it is comforting to know it is there.

Under Sarah and Alice’s guidance, Phoebe started methotrexate in January this year.  My husband and I were devastated at this decision – largely due to the fact that the drug is used to treat cancer and really hit home how serious Phoebe’s condition was. There was no alternative. We worried about the potential side effects in particular the nausea and the hair loss.  A silly thing really when the other option is your child being a cripple but nonetheless Phoebe’s favourite Disney character is Rapunzel and she has always wanted long hair like her (and her sister). The first 12 weeks went well with Phoebe taking her medicine on a Friday and then folic acid on a Monday. However she started to be sick in April repeatedly on taking it. It was instant – the minute she took the medicine she would projectile vomit everywhere. This made her dread the medicine the next week and would further exacerbate the situation – making us all dread Friday nights. 

It was on one Saturday, following yet another night of vomiting, that I rang Sarah in tears to ask for advice – I was so close to taking her off this dreaded drug. Sarah was amazing – at home on her day off but still making the effort to help a mother in distress (god bless her!). She suggested giving Phoebe the medicine in drinks - such as concentrate Ribena. I doubted if it would work but sure enough that night Phoebe (and her sister Poppy – although her glass without the methotrexate) had a ‘Ribena race’ and she managed to keep it down. It has continued for the past few months in this pattern although she is starting to notice that it doesn’t taste like Ribena and is kicking up a fuss – this again causes stress. But we just have to get on with it with a lot of bribery!!

Amongst all of the above, Phoebe has been having the routine two weekly blood tests – which have now dropped to two monthly. The team here in Guernsey have been amazing and these have never fazed her. We call them ‘Ribena tests’ – because the blood looks like Ribena and she actually looks forward to them because she gets to have a drink of Ribena and some choccie buttons! 

She also has her eyes tested every three months and thus far they have been clear of uveitis (touch wood). We sometimes find the juggling of the appointments (physio, ophthalmology, paediatrician, Southampton, blood tests etc..) and making sure she has all the medicines ordered a nightmare – especially as in Guernsey it takes a week for them to come in and you can only order three weeks at a time.

Throughout the process Phoebe has remained resolutely happy and positive and is totally unfazed by her condition. We talk to her about ‘her knees’ and ‘arthritis’ when she asks and as a family we do raise it when needed – especially when we have to leave the other two children to go to Southampton.  This is hard because it splits up the family although Phoebe does enjoy the trips because she gets us all to herself!!

It is an emotional time and has been very hard for us both to come to terms with having a child that needs so much doctor / hospital time.  All anyone wants is to have children that are well. The uncertainty of the disease and not knowing what the future holds is hard but we remain positive that she will outgrow it and it makes us want to help other families that may be going through hard times as well.  

Phoebe is unaware of any of the upset and continues to be the happy and extremely active little girl that we know and love – she skis, swims (almost without armbands!) and does ballet – most of all she runs about the place like her siblings and her friends and if you didn’t know that she had arthritis you would never guess.  So as I write this what more could we ask for? x