Tot’s ‘ouchy’ skin sign of her rare form of arthritis

Stiff joints and painful skin part of daily life for sassy 2-year-old

Two-year-old Madilyn Paish’s joints are so stiff in the morning she can barely walk. Some days her skin is so sore she can hardly bear clothes.

The Southland toddler lives with a rare form of arthritis — a condition most people associate with old age.

Mum Makayla Milne first took Madi to a doctor when the little girl became unwell and developed a painful rash at 5 months of age.

That was the first of many trips to the doctor or hospital at which Milne was told it was a virus or teething.

But she knew something more was going on.

The rash was so painful Madi was constantly screaming in pain and telling her mum her “skin was ouch”. Her joints also swelled up regularly.

It became so bad that in December, more than a year after the rash first appeared, Milne called an ambulance and demanded they take her from their home in Gore to Southland Hospital where a paediatrician confirmed her fears.

He agreed straight away something more serious was going on and after a week of testing Madi was diagnosed with systemic juvenile idiopathic arthritis.

About one in 1000 children have juvenile idiopathic arthritis — inflammation of the joints in which a cause cannot be identified.

Only about one in 10 of those children have the systemic version which often involves fevers, rashes and inflammation of organs as well as joint swelling, stiffness and pain.

The disease can lead to heart and lung problems, interfere with normal growth and bone development and cause high blood pressure.

There is no cure for the disease but with the right treatment remission is possible, leaving the child with few or no symptoms.

Milne said the diagnosis left her in tears. “I was so overwhelmed.

“I was so happy that she had a diagnosis but I was so mad and upset at the world that she was so sick and I was mad at myself that I was happy that she had a diagnosis because it was such a bad diagnosis.”

The tests also revealed Madi had a heart murmur and was severely anaemic.

She was quickly started on steroids in an effort to help with the pain and swelling but the toddler developed “roid rage” which is now controlled by adding further medication.

In February, doctors started Madi on a weekly dose of the chemotherapy drug methotrexate, used in low doses as an antirheumatic drug.

Milne said injecting the drug into her little girl every week was the hardest thing she’s ever had to do. And despite the low dose, the drug still made Madi feel miserable and put her off food for a few days.

Since then doctors have discovered Madi’s body is no longer making the natural steroids and adrenaline it needs and her kidneys are starting to be affected.

While she no longer gets rashes, her skin and joints are still painful so last month she was started on a second chemotherapy drug which she will get a dose of every two weeks for the next six months.

Despite it all, Madi remained a fun, sassy toddler, Milne said.

“Some days are harder than others. Some days she cries but most days she’s full of sass and you wouldn’t know she’s sick. She’s the funniest, most caring little girl ever.”

Arthritis New Zealand awareness and advocacy manager

" She’s the funniest, most caring little girl ever." Makayla Milne, Madi’s mum

Francesca Holloway said the impact of juvenile idiopathic arthritis could be significant because most people were not aware it could affect children.

“Children and teens who attend the camps that Arthritis New Zealand run talk about challenges they face at school including bullying and disbelief that children can have arthritis. One child reported that peers at school thought he was making it up about having arthritis,” she said.

But a close friend, who’s become Madi’s honorary nana, has set up a Givealittle page for the family to make life a bit easier by helping them cover the cost of weekly trips to Southland Hospital and other expenses.

At the top of the list are a new mattress to try to help Madi sleep more comfortably and reduce the stiffness and pain in the morning and a safer car to make the twohour round trip to hospital each week, Milne said. If Madi went into remission, any donations not used would be donated to the children’s ward at the hospital.