Living with a child who has JIA
Ok so I have a 6 year old child – Liam, funniest little child, very happy, quick witted, dry sense of humor like his daddy, but we found out a while ago he has JIA or Juvenile Idiopathic Arthritis.
What is JIA – Source for below is wikipedia
Juvenile idiopathic arthritis (JIA), also known as juvenile rheumatoid arthritis (JRA), is the most common form of arthritis in children and adolescents. (Juvenile in this context refers to an onset before age 16,idiopathic refers to a condition with no defined cause, and arthritis is the inflammation of the synovium of a joint.)
JIA is an autoimmune, non-infective, inflammatory joint disease of more than 6 weeks duration in children less than 16 years of age. The disease commonly occurs in children from the ages of 7 to 12, but it may occur in adolescents as old as 15 years of age, as well as in infants. It is a subset of arthritis seen in childhood, which may be transient and self-limited or chronic. It differs significantly from arthritis commonly seen in adults (osteoarthritis, rheumatoid arthritis), and other types of arthritis that can present in childhood which are chronic conditions (e.g. psoriatic arthritis and ankylosing spondylitis). Aetiopathology is similar to rheumatoid arthritis but with less marked cartilage erosion, and joint instability and absent rheumatoid factor.
JIA affects approximately 1 in 1,000 children in any given year, with about 1 in 10,000 having a more severe form.
How did we find out, well he started walking with a limp, this gradually got worse. took him for scans and nothing shows up, his condition gets worse. it gets to the point that over one xmas 2 years back he could not walk, all he could manage was to shuffle around on his backside to try and play his brother at football. A couple of times he cried in the morning as he wet himself, this was due to being in so much pain that he could not walk to the bathroom. Eventually we found out that it was JIA and that we needed to have him fastracked on treatment or he could face some very serious issues.
I think the worse thing a parent can face seeing is there kid in pain, worse than that knowing you can do nothing to stop that pain. I have to inject Liam with medication on a weekly basis – starting off this was a nightmare, he would become ill and sick with worry in the day leading to the injection. One day it was so bad i had to physically pin him down to inject him. that was the most upsetting this I ever did to one of my children, But trying to convince myself it was for the better good, it was to make him better, but yet he is looking at me with tears streaming down his face and a look that suggested he was thinking “WTF dude…. you seriously just stuck that in me…..?”
We know lots of kids with JIA, we are involved in parent support groups and try to help fundraise but i suppose this post is more to let out a little frustration that he even has this, Its easy to think why him… to be honest that did cross my mind but very quickly i learned that there is always someone worse off and over time we are learning to live with it. He will have this for life, he will always suffer, nearly always will ask the question “Why am i always last at running dad/mum?” “I do not want arthritis anymore, make it go away daddy!” – cannot lie, this is heart breaking stuff to hear from a 5/6 year old. Maybe along this journey I will update on his progress and I hope it is full of positives but know that there are going to be setbacks along the way……………..