Mystery Illness: Juvenile Arthritis

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

"I first heard the term 'Juvenile Arthritis' in 2002 when Daniel Johns (lead singer of Silverchair) was diagnosed with arthritis. Although he was older, for a short time his illness threw a spotlight on Juvenile Arthritis. Little did I know that in a few short years I would come to know this largely unknown disease intimately.

Matthew went from seeming perfectly healthy to being ill within a few short days

The symptoms 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.

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.

In 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.

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 as well.

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 flus that kids bring home but also nastier bugs like Chicken Pox.

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.

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 daily am astonished 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.

I 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

Compiled by Anni Taylor 2007


You are very welcome to leave a message here for Shannon.

What a litle super man you have, he is just adorable, thanks for sharing your story with us, our children are amazing little people arent they

What an amazing little boy Matthew is, and what wonderfully strong and loving parents he has

All the best for Matthew and your family

Shannon - The photo of Tom really got to me Thanks for all the information in the story. I have gathered bits and pieces over the years ...


Kids are amazing, huh?

Shannon - Thanks for sharing your story.

One of my own boys was diagnosed just before his 5th birthday (he's just turned 14). For him, the old adage of use it or lose it has been something he's lived by.

Keeping his joints as active as possible through play and then sport has seen him keep up with his peers and amaze doctors.

I hope your gorgeous little boy can do the same.

Wow, you just completely opened my eyes to JA. I must admit to being ver ignorant of it before, I had no idea that the eyes could be affected. Thank you so much for sharing, gorgeous boy too by the way!

Stella

Thanks for sharing your story with us all Shannon.

Like Victory that pic of Tom in the hospital got me all as well.

Thanks for sharing Matthew's story with us Shannon, he is such a little trooper.

Kylie

Thank you for sharing Matthew's story, Shannon! As a pauci-articular RA ex-sufferer, his story is very close to my heart

Much love to your brave little man, and may the big 'remission' word be graced on him soon

Shannon

Thank you so much for giving us an insight into a disease that many do not realise exists. It's an awful disease for the older population, and truly heartbreaking to see it in children.
May Matthew go from strength to strength as he grows.

Anni

(Thank you also to members who shared stories of Juvenile Arthritis here)