Toddler’s shock diagnosis has led to seven years of weekly injections
WHEN Beth Douglas was just two years old, her parents noticed she had started to walk with a limp.
At first they thought she had a problem with her hip, or perhaps a viral infection that would soon clear up.
However, following three months of tests, they were eventually given a shocking diagnosis – the toddler had arthritis.
“It was a total surprise,” says mum Sharon. “It came out of the blue. Parents don’t think of their children having arthritis. People associate it with old age.”
The condition, known as juvenile idiopathic arthritis, is a chronic inflammatory disorder affecting one in every 1000 children aged under 16 in the UK.
The disease manifests itself in many different ways, but the main characteristic is the swelling of one or several joints, including the knee, ankle, wrist, hip and jaw.
As a result of her condition, Beth, now ten, has spent much of her young life visiting the Capital’s Sick Kids hospital, often with 12-year-old brother Cameron and six-year-old sister Kate in tow.
“All our kids know the staff by their first names,” says Sharon, 43. “The staff at the Sick Kids have watched our family grow up.”
Eight years on, Beth’s arthritis is being kept under control with medication, allowing her to live as normal a life as any other child.
As the sportiest member of her family, this is something that is very important to her. However, it comes at a cost and, unlike most children, she has to suffer a painful injection given by her parents every week.
“It’s really traumatic having an injection every week for years and years and years,” says Sharon, who works as an education assistant in the Edinburgh Clinical Research Facility. “Beth has had injections for seven years. For the moment, there’s no sign she is going to grow out of it.”
One of the most common drugs used to treat JIA is methotrexate, a chemotherapy drug used to treat different types of cancer. While it helps reduce inflammation in the joints, it produces side effects of nausea and sickness.
For this reason, many parents choose a Friday or Saturday night as the time to give their child the injection, to allow time for recovery.
Beth’s injection night is on a Monday, the quietest night in the week for the family, who live in Aberlady. In an attempt to soften the blow, she is allowed to download a new song from the internet every time she has an injection.
The drug affects a child’s immune system, making them more susceptible to infections. While Beth has succumbed to shingles, she has so far avoided another condition common in children with arthritis – uveitis or inflammation of the eye lining. This can lead to more serious problems such as cataracts, glaucoma or even reduced vision, and Beth has to go for regular screenings.
The type of drug and the dose administered to children is continually reviewed. In Beth’s case, a decision was taken a couple of years ago to cut her methotrexate dose by half to see if the arthritis had gone away. Within three months, she had suffered a flare-up and had to go to hospital to have steroids injected into her joints.
With all this going on, Sharon and her husband, Alan, a GP, have to try to make life as normal as possible for their other two children.
“They don’t like seeing Beth having injections,” says Sharon. “We try to keep it all quite normal and low-key rather than making it a drama. They are very proud of how Beth copes with it.”
When Beth was first diagnosed, Sharon and Alan, 42, felt completely isolated.
“We weren’t aware of any charities for children with arthritis,” says Sharon. “There were charities like Arthritis Care but the needs of a child and their family are different from the needs of an adult.”
After attending an education day on JIA in Aberdeen, Sharon and a group of like-minded mums decided to set up a support network. This developed into a committee and later, in 2009, became a charity – the Scottish Network for Arthritis in Children (SNAC).
Next Friday, Sharon is to be awarded the principal’s medal from Edinburgh University for services to the community in recognition of her work with SNAC. The charity, which is supported by the Scottish Paediatric and Adolescent Rheumatology Clinical Network, organises educational days for parents and an annual family weekend. It also provides local contact and support for families across Scotland.
“SNAC makes a positive difference to families,” says Sharon, who is also the consumer representative on the Medicines for Children Research Network. “It removes the isolation people feel. It is quite a hard time, you don’t know what the future holds for your child. We have that understanding of what it is like to have a child with arthritis. We have an understanding of what it’s like to have to give a child an injection.”
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