Feature member story: the mystery illness of juvenile arthritis

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Shannon tells of the painful and disabling illness affecting her son and many other children.

We had not long celebrated Matthew’s third birthday when we began to notice little signs that things were not right in his world. We were soon to find that his mystery illness had a terrifying name: juvenile arthritis.

The symptoms Matthew had were subtle at first; he was reluctant to ride his bike or walk distances that he had previously been able to. He had recently recovered from a severe cold and we wondered if he was perhaps still unwell from that.

In the week leading up to Christmas Matthew suddenly took a turn for the worse. He would wake in the mornings complaining of sore knees and he was walking very stiffly – he looked like a little old man.

Then early one morning, we heard screaming. Matthew had tried to get out of bed and his knees collapsed on him. By lunchtime he was still unable to walk so we raced him urgently to the doctor, who immediately sent him for blood tests. The results came in on New Years Day: Matthew had Juvenile Arthritis. Life suddenly became a whirlwind of specialists and medical terms and medications.

The damage to Matthew’s eyes had already begun

There are several different types of Juvenile Arthritis. Matthew was diagnosed with Pauciarticular Arthritis, which means four or less joints are affected. This type of arthritis also includes the risk of developing an eye condition called Uveitis, which involves inflammation of the inner eye. This may cause permanent eye damage if not treated. Even low-grade inflammation can cause cataracts, glaucoma and many other sight-threatening complications. Matthew was immediately referred to an Ophthalmologist.

Unfortunately we were too late and the damage to his eyes had already begun. He was also diagnosed with severe Uveitis (secondary to Juvenile Arthritis) and cataracts. Initially we had to administer steroid drops in Matthew’s eyes every two hours in an attempt to regain some control over the inflammation. For several months his eyes appeared quite stable but arthritis is a strange and unpredictable disease and an unexpected flare up caused the cataract in his right eye to completely compromise his vision. He would need to have it surgically removed.

Without an operation he would have lost his eyesight
 
matthew&tomIn adults, the surgical removal of a cataract is a fairly straightforward procedure, requiring nothing more than a local anaesthetic. However in Matthew’s case it was much more complicated. It is also a rather dangerous procedure; surgery obviously causes inflammation, and as Matthew’s eye was already ravaged with inflammation, we could not afford to cause any more.

If the inflammation became too far out of control, it was possible that he might lose all sight in that eye; and as a worse case scenario, lose his eye altogether. Not performing the surgery on the other hand was nearly as bad. If we didn’t operate he was guaranteed to lose his eyesight completely. His surgeon placed him on an intensive dose of steroids to reduce as much of the swelling as we could in the days leading up to the operation. Once it looked as good as it was going to get, a date was set. 11 December 2006.

Thankfully Matthew’s surgery went extremely well. He came home from hospital the next day. He was on half-hourly eye drops to control inflammation and ward off infection, both of which could have devastating results. The following weeks saw us attending weekly eye examinations and checkups and miraculously he continued to go from strength to strength. As the lens in his eye had been surgically removed, to enable him to continue to develop his eyesight Matthew would need a contact lens. The contact lens (using the most simple explanation) attempts to compensate for the lack of the lens inside his eye and allows the most ‘natural’ sight maturity.

The drugs lower Matthew’s immune system

Matthew has now been wearing his contact lens in his right eye for around nine months. Initially he tolerated the lens incredibly well. However over the last few months he has unfortunately suffered a ‘flare up’ in his joints and subsequently his eyes have become inflamed also, which irritates his lens. Hopefully another intensive dose of steroid eye drops will settle the condition and allow the lens to be more comfortable for him to wear. He is developing a cataract in his left eye as well so at some stage it too will need to be surgically removed.

It seems sometimes that we don’t get a break from the affects of JA at all. One of the many medications Matthew takes is a chemotherapy drug called Methotrexate. This is used to slow the division of cells. Matthew is required to undergo a blood test every six weeks to ensure that the medication is not damaging his liver and other vital organs. Methotrexate also suppresses his immune system, so he is largely at risk of contracting not only the common colds and flu’s that kids bring home but also nastier bugs like Chicken Pox.

We’ve met many other families affected by Juvenile Arthritis

Sadly, Juvenile Arthritis has not had the exposure that many other childhood diseases have; for instance, Juvenile Diabetes. The Arthritis Foundation in each state is currently working on the ‘KIDS GET ARTHRITIS TOO’ campaign to raise awareness in the community.  Hopefully, Juvenile Arthritis will soon cease to be a mystery illness.  It currently affects many children who have been unable to be diagnosed.

Many people think of Arthritis as a disease that the elderly suffer from (Osteoarthritis), Juvenile Arthritis is most closely linked with Rheumatoid Arthritis which is rather different to Osteoarthritis. Rheumatoid Arthritis is an autoimmune disease whereby the sufferer's body mistakenly attacks tissue that surround the joints, causing pain and inflammation.

Life with Matthew, while hectic and time consuming, is a pleasure. He rarely complains about any of the treatments he is subjected to and wants nothing more than to be treated like a ‘normal child’. He delights in wrestling with his younger brother (who makes no allowances for his condition at all!) and engaging in all the rough and tumble play that makes boys distinctively boys. Since Matthew’s diagnosis, we have met many other families with children suffering from this debilitating disease and I am astonished daily with the ease and grace with which these children simply ‘get on with life.’ They push through the pain barrier and improvise ways to compensate for their particular shortfall.

Looking at the future
 
matthew&ryanI know there will come a time for Matthew when the extent of his limitations become an issue for him and he will long to be an able-bodied child. As a mother I worry endlessly about schoolyard teasing and mourn for the childhood it is likely Matthew will not know.

For now, we focus on providing him with the love and support he needs to find his life enriched with the things he is able to do; and we delight that we are raising a boy who is tolerant and accepting of all people, regardless of their abilities.

We could not ask for more than the wonderful boy that Matthew is.

Shannon

What is Juvenile Arthritis?

  • Juvenile arthritis affects as many as four in every 1000 Australian children and teenagers.
  • Arthritis is considered "juvenile" if it occurs before the age of 16 years.
  • Like most forms of arthritis, juvenile arthritis refers to the inflammation of joints, which means they may become swollen, stiff and painful.
  • The cause of juvenile arthritis is unknown
  • Symptoms include swelling, redness around joints, stiffness, limping, weak muscles and limitations in the range of movement of joints. Any joint can be affected.


    www.kidsarthritis.org.au

Compiled by Anni Taylor 2007

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