My daughter’s juvenile arthritis: ‘Every time I stuck the needle in her, I knew I was poisoning her’
Elisha Dillon (10) has suffered from juvenile arthritis since she was a year old
Paula Dillon with her daughter Elisha: ‘Elisha’s arthritis affects the whole family.’ Photograph: Tomas Tyner, UCC
Elisa Dillon has never had a normal childhood. She has never jumped out of her bed in the morning and raced into her parent’s room. Instead, her mother Paula has to coax Elisha out of bed at 6.30am every day to start work on loosening her daughter’s stiff, arthritic joints.
Now 10, Elisha has had arthritis since she was one and struggles daily. There are days when she is in so much pain that her mother can’t even give her a hug. She has arthritis (juvenile idiopathic arthritis) in every joint in her body, apart from her hips and spine.
Paula – on top of dealing with the physical and emotional pain of the condition – finds the lack of awareness and empathy around arthritis as a chronic disease, heart-breaking. Most people still think of arthritis as an older person’s disease and are amazed to hear that it affects children.
“Arthritis is an invisible disease, [but] just because you can’t see it doesn’t mean it doesn’t exist. Elisha looks healthy and well, but the disease is eating away at her from the inside.
“People think it’s all in your mind and there is nothing wrong with her. Arthritis is not just an old person’s disease and it’s not just a few aches and pains. The pain she goes through is cruel.”
Some days Elisha’s arthritis is so bad that she needs a wheelchair to get around, which means she can’t go to school as there is no classroom assistant for her. When she does go to school, she often has to sit inside during her lunch break as she is so unwell. She can’t play with other children, she wears a splint on her elbow and wrist in bed every night, and she can’t open her jaw fully to chew her food.
These are just some of the daily challenges Elisha faces. That doesn’t include the emotional effects of her disease: isolation, exclusion and loneliness.
Her treatment includes regular visits to a physiotherapist, occupational therapist, speech and language therapist, Cat scans, MRI scans and opthalmology.
Until she was a year old, Elisha was a happy-go-lucky child who slept all night, her mother explains. Almost overnight, though, her joints started to swell and stiffen and she turned into an irritable child who was constantly screaming and crying.
It was a dreadful time for Paula, who had three children under the age of three at the time. She believes that delays in diagnosing and starting an appropriate treatment regime for Elisha are responsible for the disease spreading to so many joints and leaving her with one shorter leg. It was not until Elisha was transferred to Dr Orla Killeen’s paediatric rheumatology team at Our Lady’s Children’s Hospital in Crumlin, Dublin, that Paula felt she was finally being listened to. At this stage, Elisha was three and a half years old and hobbling, instead of walking.
The Dillons spend a lot of time travelling from their home in Athlone to Crumlin for Elisha’s medical appointments. She has recently started on one of the new biologic drugs developed to treat arthritis. The first one she tried did not work for her, but Paula is hoping that this one will.
“We were told she could grow out of it at eight and I couldn’t wait until her eighth birthday but at seven years and 11 months, we found out that another (her eighth) joint was affected and she had to start harder chemotherapy drugs. Every Friday, when she came home from school, the screaming and roaring would start. I had to give it to her myself and every time I stuck the needle in her, I knew I was poisoning her. It’s a very hard thing for a mother to have to do, and to have to watch your child crying while you fight back your own tears. She would spend all that night and all day Saturday hanging over the toilet bowl and it would be Sunday evening before she started to come back to herself. Then she had to face back into school again the next morning. She wasn’t really able for it, but I knew if I took her out, she might never catch up.”
While Elisha has seen some very slow improvement with the new biologic drug, she still has three bad days for every good one. Unlike other children with arthritis she has never gone into a period of remission and her mother dreams of even just one normal, pain-free weekend for Elisha and the rest of the family.
“Elisha’s arthritis affects the whole family. We can never say we will go to such and such a place tomorrow; we never know how she will be in the morning or how long it will take to get her ready. It would be nice if we could get away from it, if Elisha could leap out of that bed in the morning, fling her clothes on, run out the door and kick a ball without hobbling.”
For the first few years of Elisha’s illness, Paula felt incredibly isolated. She knew nobody else with an arthritic child who could understand what she, as a parent, or Elisha were going through. Then on one of their visits to Crumlin, they met Laura Hickey from Arthritis Ireland, who opened up a whole new network of support.
“Without Arthritis Ireland (AI), we had a very different road ahead of us. I felt on my own for a very long time but, through AI, we got to meet a lot of other parents and children who could understand what we were going through. I can pick up the phone and talk to somebody who understands and who will listen, it’s very important for us as parents to have that and for Elisha to see that she’s not the only one.”
As a mother of a child with a chronic disease, Paula says she has had to fight every step of the way for her daughter’s needs to be met.
“Parents like us will not go looking for stuff like a wheelchair if we don’t genuinely need it. I was still carrying Elisha in my arms at the age of eight until I couldn’t carry her any more, before we got a wheelchair for her. She can’t walk more than 200 metres some days without her ankles giving in. We were told arthritis kids should be walking, they’re no different from anybody else; but they are, they’re in pain.”
However just like her mother, Elisha is a fighter and they are determined not to give into her disease.
“We will keep going and hopefully we will be stronger than the arthritis,” vows Paula.
Arthritis Ireland provides a range of supports for children with arthritis and their families including a dedicated Juvenile Arthritis Helpline at 1890 252 846, a constant presence in the JA clinic at Crumlin Hospital, information booklets and a website: juvenilearthritis.ie