Lewis takes aim against odds
Wednesday, 12th August, 2020
By Annette Northey
Having Juvenile Idiopathic Arthritis is not an enviable position to be in, but despite years of excruciating pain and a nauseating and frightening medication regime, a young local man has faced his ordeal with dignity and come out a champion.
Lewis Williams describes himself as an adventurous kid, in an unassuming kind of way. He liked making things, he said.
“I didn’t really do much,” he said.
“But I used to make a lot of stuff in the shed, and went camping a lot.
Twelve months before being diagnosed with Juvenile Idiopathic Arthritis, Lewis was running around and riding his bike a lot. He would ride his bike or scooter to school, and on weekends he’d ride around Sturt Park, just across from his house. He admitted to playing sport but didn’t really like it that much. Around the time he was in Year 4, at about nine years of age, he got into archery outside of school.
It was a natural progression for Lewis.
“Stewart (Lewis’ older brother) was doing it and I sort of liked it,” he said.
“We went to Mildura for soccer one time and went to this camping store and I saw this bow kit, and we bought it.”
The kit was a recurve, which meant the limbs and the handle were already assembled and you just had to put the string on it, so Lewis put it together himself.
You see, Lewis has always had an engineering brain. He knows how things work, likes to solve problems. You could say he’s a ‘sciencey’ type of kid.
Lewis would go out to the range with his dad, Wayne, on Sundays when Stewart was shooting. His dad would take him out there about 20 minutes before Stewart finished and he would shoot on the practice range. There was no pressure. But he really liked it and took to it, eventually joining the archery club when he was in Year 5.
So, soccer came and went, but archery was always there. He would go to shooting practice on Tuesdays each week, then to the club competition shoot on Sundays. Little did anybody know then that something sinister was brewing in Lewis’ body.
Back when he was in Year 3, he had begun to notice mild pain in this left knee. If he ran around a lot it would hurt a bit more than usual, afterwards.
He didn’t think much of it, just that he might have bumped it or something. The pain became more intense however when he was in Year 4. Some mornings it was so bad that he couldn’t get up out of bed.
He described that pain as “feeling like someone had just smacked it with a hammer”.
By this stage Lewis’ knee was swollen, which prompted his parents Noeline Ratcliff and Wayne Williams to take him to their family GP, whose impression was that it might have been Osgood-Schlatter disease, which is a common cause of knee pain in growing adolescents. It is an inflammation of the area just below the knee where the patellar tendon attaches the knee cap (patella) to the shin bone (tibia).
He was given a constriction sock and advised to take ibuprofen and paracetamol twice a day. But this didn’t really help and it would be sore for most of the day, with some days worse than others.
At times, Lewis’ knee would be so swollen that he could no longer play in the school playground, so he would sit in the classroom at recess and lunch times and play on his teacher’s computer. He couldn’t run around with his mates or ride his bike or scooter to school any more. This went on, with the constriction socks, analgesia and ice-packs not really making much of a difference.
Lewis’ pain progressed to the stage where his mother would have to carry him to the toilet in the mornings because his knee was too painful for him to walk himself. Even being carried hurt his knee, with the weight of his leg flopping down. By the end of the day the knee was not as sore, and he could get into the shower without assistance, but after laying in bed all night the knee would tighten up and be really bad in the morning again.
Lewis’ worried parents took him back to the GP who ordered an X-Ray and was told again it was Osgood Schlatters. They requested a referral to a paediatrician and saw one in Mildura in December 2016, who diagnosed Juvenile Idiopathic Arthritis (JIA) the same day after blood tests and an MRI.
The paediatrician referred Lewis to a paediatric rheumatologist at the Women’s and Children’s Hospital in Adelaide, whom they saw in March 2017.
The rheumatologist, Dr Christina Boros, told them that ‘idiopathic’ means the cause is unknown.
“We don’t know what causes it, but we know how to help the symptoms,” she said.
Lewis explained that they do know the body attacks itself because it thinks there is something wrong with it.
“It thinks there is an infection there and it swells up and stuff,” Lewis explained.
This puts JIA is the category of autoimmune diseases.
Dr Boros started Lewis on a course of Naproxen in liquid form and low-dose Methotrexate in tablet form, and this was the beginning of a very long and horrible treatment regime.
About four months after commencing the tablets, he developed anticipatory nausea and vomiting and the rheumatologist switched his Methotrexate to injections.
“I’m so grateful that some of my close friends are nurses and taught me how to give the injections,” Noeline said.
“I had it in a mild dose but that made me sick,” Lewis said.
Lewis’ nausea from the Methotrexate got to the stage where he would vomit frequently.
“Once the injections commenced I would just lay down with the bucket next to me, and mum would finish (giving the injection), and I would vomit immediately.”
He was subsequently prescribed anti-nausea medication for this but the problem escalated.
Lewis said he was taking the anti-nausea medication and vomiting that up too.
“It got to the stage where the thought of even having to take the anti-nausea medication made me sick,” he said.
Around Dec 2017, the rheumatologist ceased the Methotrexate because it wasn’t really helping the JIA much, and Lewis’ liver function tests were abnormal.
After a short break it was reintroduced, but continued to make Lewis sick, so she started him on another medication called Enbrel, given as an injection once per week.
Lewis said he experienced some mild nausea for the first couple of weeks, but then it ceased.
“For the first couple of weeks it made me feel a bit nauseous, because I was used to that happening, but then it was fine,” he said.
The cycle was broken and by early in Year 7, Lewis’ JIA was in remission.
He still has the weekly Enbrel injections now, as this keeps him in remission.
Unfortunately, it is the way of our policymakers that Lewis had to endure the hideous Methotrexate treatment for so long. It was much cheaper to subsidise that than the Enbrel.
Methotrexate is inexpensive at just $90 for a box of eight injections, of which the Pharmaceutical Benefits Scheme covers about $60. Whereas, a box of four Enbrel injections has a price tag of $900, with a PBS subsidy of about $810.
“They keep you on the cheaper one if you can tolerate it,” Noeline said.
“The Enbrel put him in remission in three months.”
Lewis’ frequent specialist appointments in Adelaide have been a financial and emotional strain on the family. The cost of travel and accommodation on a three-monthly basis, as well as time off work for his parents and disruption to schooling for himself and his two siblings has been gruelling and unsettling.
Through it all, though, he continued with his archery, competing at local club level and travelling to state and national competition shoots with his family in tow.
And last year, at 12 years of age, he became the Cub Bowhunter Compound National Champion for 2D Targets; an impressive outcome for someone who had spent the previous couple of years with his head in a bucket.
The achievement has inspired Lewis to keep practising and he is looking forward to a big Mallee shoot near Mildura next year, where they will stage the Internationals.
Although Lewis has endured much more than anyone his age should, and achieved more than any child might dare to dream of, he remains humble, positive and grounded about his future.
“I don’t think it’s likely, but there’s always a chance (the JIA will come back); but oh well, I just enjoy every day.
“I’m just having fun.”