DOB: 01/05/02 (age at May 2015 = 13 years)
As far as Bayly is concerned, he has had pain his whole life.
He first showed signs of “something” (stomach issues, settling problems) at just 6-7 months of age. Tests conducted by paediatricians early in 2003 led to a conclusion of “Cow’s Milk Protein Intolerance” but no other allergies or illnesses diagnosed.
In June 2003, aged 13 months, Bayly was first admitted to John Hunter Children’s Hospital after his left ankle swelled up, among other symptoms. He had started cruising but suddenly stopped and Mum (Jo) suspected Bayly was not wanting to weight-bear. Two weeks of medical investigations included X-rays, CTs, bone scans, MRIs, joint aspirations, and 19 blood tests! The doctors did not know what was causing this baby such pain.
He lost 2 kilos in two weeks and was very ill, with unexplained temperatures and “non-specific” rashes. As Jo found out she was pregnant with Violet literally the day before Bayly was admitted through Emergency, she was unable to be near her baby boy for many of the ‘risky’ tests! Oncologists and Orthopedic Surgeons decided he “wasn’t one of ours”, so Bayly was referred to a Paediatric Rheumatologist for further advice; but due to a shortage of ‘Paed Rheumies’ in Australia, couldn’t get in for 6 months. It was December 2003 before Bayly first saw Dr Jeffrey Chaitow who immediately diagnosed him with Juvenile Arthritis (JIA) and within a week had him in Sydney Adventist Hospital (SAN) for more aspirations and intra-articular injections of steroids (more joints had become inflamed by then). Bayly also started a medication regime that would last, with changes, for the next 12 years and counting.
Over the years Bayly has had to wear special splints to support and protect his joints, orthotics to prevent ankle rolling with his uneven gait, has done hydrotherapy, physiotherapy. Occupational therapy, and even hippotherapy (that’s physio on horseback).
Years of immune-suppressing medication led to a number of childhood infections- which can be severe (and even fatal) for children on these drugs. Bayly’s had his tonsils and adenoids removed after repeated bouts of tonsillitis caused obstructive sleep apnoea (scaring the heck out of his mother when he stopped breathing multiple times a night)! His JIA meds had to be stopped to reduce the risk of infection at the operation, and he endured enormous pain as a number of joints flared up as a result.
Because Bayly has a positive ANA Factor which increases his risk of developing Uveitis/Iritis, (the eye disease that can come with autoimmune diseases like JIA) Bayly has seen an Ophthalmologist regularly since he was 1. So far, so good, and he hasn’t developed this comorbid condition that is a leading cause of blindness in children.
Unfortunately Bayly has developed Osteopenia, a side effect of years of steroids like Prednisolone. This gives him brittle bones and heightens his chances of fractures, and he has had his share of those. In 2006, he broke two bones in his right arm, in 2009 he fractured his left wrist twice, and in 2012 he broke his left foot in 2 places simply by jumping off a jumping castle! After each fracture and subsequent immobilisation in casts, he ends up with an arthritis flare-up in the affected joint, and experiences even more pain until we get it back under control again.
Bayly has also spent many months in a wheelchair, after a car accident (also involving Jo and Violet in 2007), the fractures, and when his hips have become involved. He has also worn a neck brace on many occasions, and had to resort to a liquid diet when his jaws locked up with inflammation (TMJs are tricky to inject).
Jo actually started the transition to school process in 2006, prior to Bayly enrolling in Early Starters, to ensure the access was suitable for a child with mobility issues. His Allied Health team were very good in helping assess the access, apply for integration funding, and his Teacher’s Aide (now called SLSOs) began the school journey with Bayly, moving through the grades as he did, and keeping an eye on him during school hours. His SLSO has recently returned with Bayly to High School, as he missed most of Term 2 due to hospitalisation from a new condition. Jo is still heavily involved in drafting his ‘Plans’ that ensure he can attend school as much as he can, like a normal child.
April 2015: after battling chronic pain his whole life, Bayly had to undergo life-saving surgery for a perforated bowel! Two surgeons worked for over 4 hours to save and stabilise him, but not without having to remove much of his large intestine. Days in Intensive Care was followed by weeks of intensive tests that resulted in a diagnosis of Crohn’s Disease, an IBD that is on the increase among young people. Apparently his had been grumbling away for years but Bayly was so used to pain, he just lived with it.
Bayly’s sister Violet is credited with saving his life. Just 11 years old, Violet recognised this pain was not the usual; she managed to keep calm and responsibly sought urgent help. If she had not, the surgeons said he would not have made it, Bayly was “one step from death” by the time they got him on the table.
This new autoimmune disease meant that Bayly has had to withdraw from an international clinical study for the biological drug Etanercept (Enbrel) that seemed to be keeping his JIA symptoms under control – in combination with Methotrexate (mtx), a chemotherapy drug that is also used to treat some autoimmune diseases in children. Mum Jo had to learn how to prepare and inject both of these at home (dad Grant is a self-confessed “needlephobe”). Bayly is now on a new combined drug therapy of Azathioprine (Imuran) and Sulfasalazine, along with Ferro-Gradumet C to control his anaemia. He recently was back at the SAN for more intra-articular aspirations and injections for joints that flared-up after withdrawing from his previous medications.
Bayly is now a ‘double disease’ kid. He takes 8 tablets every day, faces more surgery, an uncertain future, but at least for now his pain levels are under control.
Bayly still wears his splints, does his stretching (with some prompting), rides when he can, and tries to keep as active as possible without overdoing it, or breaking any more bones! His resilience is inspirational, and even though he has lived with the chronic pain of JIA his whole life, and now with an IBD showing up so spectacularly, he refuses to let it stop him living his life!
Dad = Grant Turner.
Mum = Jo Turner.
Sister = Violet Turner (DOB: 30/12/03).
Bayly was diagnosed before Violet was even born, so she has travelled this road all her life too! Being dragged around to countless appointments from the time before she was ‘in utero’, sitting in car seats and prams for hours on end during assessments and exercises, and feeling like she has been overlooked at times when Bayly needs even more attention.
Violet has proven kind, caring, and completely empathetic, holding Bayly’s hands during blood tests, or holding the bandaids to put on after his injections. A big help for Violet has been extra attention from mum (and when home and awake, from dad), and focus on her special gifts. Both Bayly and Violet have been offered places in Selective High Schools, and both have proven incredibly resilient despite having JIA in the family. Their empathy towards other people is a joy to see. The doctors who operated on Bayly in April say that Violet saved his life. If she had not recognised the ‘new’ pain and called for assistance so quickly, he would not have survived.
Grant sees his role as the breadwinner, so has spent many sleepless nights at work trying to keep a roof over our heads, and pay for the extra costs associated with having a chronic condition on board. Grant suffers the aches and pains of years of night work, and double shifts. But he says his pain is nothing compared to Bayly’s.
Jo’s been to almost every appointment Bayly has ever had, has learned to give injections of two types of medication, set up nasogastric feeding, had a crash course in multiple medical apparatus, and can talk the talk with most medical personnel involved in Bayly’s treatment (often being asked if she is in the medical profession herself)!
Jo has been an advocate not only for Bayly but many other families with JIA, helping make Centrelink include JIA in the Carer Allowance (and Health Care card), successfully campaigning the NSW government to introduce Paediatric Rheumatology Clinics at JHH and other major regional hospitals, working with Arthritis NSW to start up Camp Twinkletoes (family weekend for kids with arthritis aged 8 and under), and running an online support group www.kidsgetarthritistoo.org.au
Jo has also been a voice for other children in pain, most recently with Chronic Pain Australia and National Pain Week 2013 and 2014. Jo is a JP, a Carer Representative with Carers NSW, and was involved in workshopping the NSW Carers Strategy for the state government. Jo is also Board member of Chronic Pain Australia, is on the newly formed Family Advisory Council for the Hunter New England Health region, invited to attend the inaugural Consumer Engagement Special Interest Group for Children’s Healthcare Australasia, and is often asked to help out other families who need answers, or a little extra support.
In 2010, Jo ended up with a paralysed leg after routine abdominal surgery went amiss, so was in a wheelchair herself and had to learn to walk again. She suffers chronic pain, and permanent nerve damage. This has proved even more challenging in caring for Bayly as her pain and physical limits (not to mention mental and emotional) are reached a little more quickly these days. Jo’s professional background is media, working in radio for over 20 years (Grant also has a former career in radio- it’s where they met).
In 2014 the whole family helped out with the new Pain Management Website created by ACI for NSW Health- particularly the Pain Bytes series.