Eliza's story

At 10 months old, baby Eliza took her first tentative steps towards my open arms. By 11 months, Eliza had stopped walking, stopped crawling, could no longer pull herself up to standing, barely slept and was constantly upset. A trip to the doctors and she were diagnosed with ‘a cold’ and I was asked “is this your first child?”.

Shortly after her first birthday Eliza was taken back to the GP and I was abruptly told “it’s just a virus – come back if it worsens”.  I felt like I was being a paranoid first-time mum.  After months of sleepless nights and still refusing to walk or crawl properly, I noticed Eliza’s left knee looked swollen and wouldn’t straighten.  I took her to the GP again and demanded some answers.  Thankfully, the GP listened and referred her to see a consultant. 

We spent two days at the hospital having x-rays, blood tests and ultrasounds before the consultant said she thought it could be arthritis and referred her to a paediatric rheumatologist.   After a thorough examination by the consultant, he confirmed that not only was her left knee affected, but also her left ankle and both wrists and diagnosed her with oligoarticular JIA.  He decided the best course of action was to inject the affected joints with corticosteroids and start physiotherapy to rebuild the strength back in her legs.  At this point, I wasn’t too worried, oligoarticular JIA affects up to 4 joints and we were at that number already so it couldn’t get much worse. 

Unfortunately, by the time Eliza was 20 months old, she had around 15 joints affected.  She was then diagnosed with polyarticular JIA.  Every visit to the consultant was filled with bad news and even after another 3 joints were injected, the steroid injections alone just couldn’t control it.  The consultant wanted to put her on methotrexate which meant, eventually, I would have to give a weekly injection at home.  I was absolutely horrified.  Firstly, at the drug itself and the fact that I thought that it would destroy her immune system and leave her open to serious illness and secondly, I was completely needle phobic and usually passed out at blood tests. 

Eliza was admitted that day to hospital and spent three days attached to an IV and given methylprednisolone, which is an intense course of steroids and the methotrexate was started immediately with an injection.  Eliza was so distressed with all the needles – and so was I.  We were visited by so many professionals at the hospital that I quickly lost track of who was who and what they did.   My friends and family tried to be supportive but apart from sympathy and suggestions such as “keep her warm” and “she’ll be fine, she’ll grow out of it”, they just couldn’t comprehend the extent of Eliza’s condition. 

For around 8 weeks, we had a wonderful nurse come and teach me how to inject methotrexate in to Eliza every week.  The nurse was so patient as every time I tried to do the injection, my hand would uncontrollably shake and I would start panicking.  I felt that I couldn’t show Eliza how nervous I really was as it would upset her even more.  After several weeks of practising sticking a needle into a large orange, I managed to do it for real.  Finally, I managed to get over that first hurdle.

By the age of 3, her arthritis appeared to be under control so the decision was made to take Eliza off methotrexate in the hope that her arthritis had gone, or in fact, she had “grown out of it”.  Unfortunately, the worst was yet to come.  Within 6 weeks of finishing methotrexate, Eliza was showing signs of arthritis in 5 new joints.  Almost immediately, she was put on another course of methylprednisolone by IV followed by several weeks of oral steroids which she took at home.  The steroids certainly worked but unfortunately, as soon as the dose was reduced, more joints were becoming inflamed and Eliza was in almost constant pain so the dose had to increase again.

The side effects of almost constant steroid use were also difficult to deal with.  The change in the way she looked was upsetting as people would comment on her weight gain.  In reality, she was constantly hungry and trying to keep her hunger satisfied with healthy food was a battle in itself.   She became quite withdrawn and wasn’t interested in playing with other children.

Unfortunately, over the following 2 years, Eliza’s joints would not settle down without steroid injections and even more joints were becoming affected.  The injections provided a few weeks relief before they would swell up and become painful and she would need them injecting again. She became well known at the hospital!

The decision was then made to add a further weekly injection of the anti-TNF drug etanercept (also known as Enbrel) to work alongside methotrexate.  However, after 18 months, Eliza developed uveitis (inflammation in parts of the eye which can cause blindness if not treated quickly). She had no symptoms of uveitis whatsoever (which is unfortunately the case with uveitis), but within 2 weeks of finding a few inflamed cells in her routine 12 weekly eye test, it had rapidly progressed from mild uveitis in one eye to moderate uveitis in both eyes.  She had to start a course of steroid eye drops to be given regularly throughout the day.  After around 10 days on steroid eye drops, Eliza started to complain of a constant headache.  Paracetamol didn’t bring any relief and when she told me she hadn’t been able to see out of one eye all day, our fantastic rheumatology team arranged for her to be seen in the emergency eye clinic within an hour.  There, they found that the steroid eye drops had caused the pressure within her eyes to rise considerably and had developed glaucoma.  We weren’t able to stop using the steroid eye drops (unless of course we were happy for her to go blind), so we had to add pressure reducing eye drops to try and counteract the side effects of the steroids.  Fortunately, her sight returned. She also had to stop etanercept immediately and we had to choose between a second anti-TNF injection of adalimumab (also known as Humira) or fortnightly infusions of infliximab by IV as these drugs are known to help treat uveitis.  Eliza decided to stay on the injections but unfortunately, the adalimumab injections are extremely painful to her and we are now considering changing to infliximab even though it would mean a regular cannula and more missed school days.

The cocktail of drugs including injections, painkillers, anti-inflammatories, anti-sickness tablets, stomach protecting tablets, eye drops, folic acid and vitamins all have an effect on her mood, appetite, sleep and stamina – but she still smiles and rarely complains.  She still has constant pain, mostly in her ankles but she is learning to pace herself a little better and finds sitting on a chair (rather than the floor) helps.  We try to focus on the positive points and she is currently ecstatic (and so am I) that she can now manage to do 2 hops in a row – something she has never been able to do. 

She knows she is not like her peers and does get very fed up and upset at times but she has a very grown up head on a 5 year old body and understand that everyone involved in her healthcare is trying to make her arthritis ‘go to sleep’.  She can’t decide whether to be a ‘blood test lady’, an ‘MRI lady’ or a rheumatologist when she is older.  Either way, she wants to help other children with arthritis.  In my eyes, she is quite incredible.