Juvenile Dermatomyositis and Polyarticular Arthritis – Leesa’s Story

Juvenile Dermatomyositis and polyarticular Arthritis

I was lucky enough to have two very normal and healthy pregnancies and birth two beautiful boys.  Life was great and Harrison, our youngest, was thriving. He was such a big, boisterous boy; chunky arms, tall and an eating machine.  Now I sit here in the Day Medical Ward at the Royal Children’s Hospital, Melbourne, and wonder what was the trigger that changed our life and that of my baby boy, Harrison.

I constantly look back to when there were the first signs of Harrison’s disease, but being a busy mother of two active boys each day rolled into another.  I feel terrible that I hadn’t picked up the signs earlier – it would have saved so much heartache and pain for my baby boy.  On a holiday in April 2015, sitting on a beach, Harrison was crying and we were laughing with him, trying to make him happy and calm him down.  I wonder, was this the start?  Later that year in November, Harrison had an operation to correct a minor turn in his eye.  Again, I wonder, was this the start?

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At Harrison’s 3 1/2 year maternal health check-up, I mentioned to our nurse that he cried a lot.  He’d tap his fingers and cry, or fall over and cry, and after quick cuddle he was fine again. She asked if I thought this was behavioural, but it wasn’t.  The maternal health nurse agreed that a mum knows best and told us to see our GP to discuss things further.  Unfortunately the GP just said it was “an age thing” and there was nothing wrong with him!

Harrison was losing weight and losing confidence in himself.  He became very shy, crying at least twenty times a day and was always tired.  I couldn’t pick him up with my hands – I had to use my wrists because it hurt him too much.  I couldn’t towel dry him after a bath, and you could see he was in pain getting in and out of the car.  Christmas came and went.  Then one day we were at a friend’s birthday party, my husband Jamie was playing with Harrison and his best friend.  Hubby was ruffling up Harrison’s friend’s hair but when he tried to do the same with Harrison he cried in pain. We decided something had to be done – what was happening to our little boy just wasn’t normal.

“I constantly look back to when there were the first signs of Harrison’s disease.” Leesa with her sons Harrison (centre) and Miller. Image: supplied.

On our eldest son’s first day of school – a really exciting day for everyone – a lady walked past Harrison accidentally hit him on the arm.  He was crying so I went to him, the next thing I knew he collapsed to the ground in agony. My heart broke.  I put on a brave face as everyone asked if everything was okay but deep-down I knew it wasn’t.

That night our the doctor told us she thought Harrison had rheumatoid arthritis and that he’d need to be referred to a paediatrician. We left the appointment happy that someone was finally listening to us, but there was a three month wait to see the paediatrician – there was no way I could wait that long.  I called a clinic and explained our situation, and they got us in the next morning.  Harrison was referred to get some blood tests, and an ECG – they also believed it was some form of arthritis but his liver and spleen was inflamed so that was a concern. All tests came back neither great but nothing to be too concerned about either.  We needed to go back in two weeks to organise a further plan for Harrison.

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Harrison always held my hand when we walked to and from his brother’s school but one day he couldn’t even open his hands – he had lost complete use of both his hands.  My heart broke.  I still cry thinking of that day.  I called the doctor straight away and we were sent off for more blood tests.  Our doctor couldn’t work out what was going on with our boy but he suggested we needed to a see a rheumatologist – and he happened to know the head doctor at Royal Children’s Hospital.  He told us “Wait in the waiting room. I’ll see what I can do!”  We were lucky enough to be seen that afternoon.  “Bring a bag” they said, “It’s a good chance he’ll be admitted tonight.”

We were admitted for eight days where Harrison underwent MRI’s, X-rays, ultrasounds, blood tests, ECGs, bone marrow tests, eye tests and one test after another.  Harrison wasn’t fitting into that box of just one disease. When we left the diagnosis was Juvenile Polyarticular Arthritis – his little body was so inflamed literally from head to toe with arthritis in his shoulders, hips, knees, feet and hands. We left hospital with Harrion on steroid treatment and I was feeling confident we were on the right track, he was much happier in himself it was so nice to see.  We were being treated by the best hospital in the world and our boy was going to get better.

Juvenile Dermatomyositis and polyarticular Arthritis
“Because Harrsion didn’t fit into a box, doctors would say that there was nothing wrong with him.” Image: supplied

Before our first outpatient appointment I felt confident; I just went with my mum. But our doctor, Ang, had bad news. They weren’t happy with Harrison’s liver function, among others things. My hubby was working away that day and I was so confident he didn’t come (this has now changed, he comes to every appointment).  My heart broke.  I told them we’d do anything for him.

After more testing Harrison was diagnosed with Juvenile Dermatomyositis with overlapping syndrome of Polyarticular Arthritis. There are only four cases of this disease each year at RCH Melbourne.  Harrison is constantly monitored throughout various departments and our Rheumatology team have been amazing; they listen to our concerns, help us whenever we need help and are fascinated by our little boy – he keeps them on their toes!

Deep down I knew something was wrong and I knew I had to fight for him.   Because Harrison didn’t fit into a box, doctors would say that there was nothing wrong with him.  I called his paediatrician so many times one day that I apologised for calling so much.  He said “You never ever need to apologise for calling me. We will get your boy the help he needs.”   He was the one doctor who listened.  No-one knows your child like you do.  If you believe something isn’t 100% then fight for them.  When I tell a GP what condition Harrison has they tell me they  have heard about the disease in medical school, but never meet anyone with it!

In the five months of our experience there’s been plenty of up and downs.  We’ve had to change Harrison’s medications around, we now have an injection once a week, steroids and folic acid every day, every month we head to RCH for the day to have intravenous immunoglobulin (IVIG), which has made such a difference to our boy.  He still has a terrible skin condition which is part of the JDM, it will be trial and error to get the right things to help him with that but we are on the road to recovery – if there will ever be such a thing.  The outcome of these diseases is unknown.  We expect to go down this path for two years when it’s hoped he’ll go into “remission”, but we’ll continue this path for our boy to have the best life he can, pain-free.

polyarticular arthritis and juvenile dermatomyositis
Happy Harrison.  Image: supplied.

We’ve been so lucky to be surrounded by such supportive people including our family, friends who we’ve known for years and also friends we’ve met more recently at kinder and school.  It’s like they have lived through this with us and are just as happy as we are to see Harrison back to himself.  To them, all we can say is: Thank you.  It’s the simple things of life we take for granted, like seeing your kids run, play in the park, go down the slide, go on the swing, play with their friends – it makes me smile every single day when I see Harrison doing all those things.  He now has a name at school – Happy Harrison – and it’s wonderful our friends can see such a difference in him.

We will take on this journey with smiles on our faces, be strong for Harrison and also for Miller. The hospital has become part of life for us and we need to be grateful that we have access to such great doctors and medicine.  As a parent you want to protect your child from needles, injections, medication, etcetera, but we are very open to Harrison explaining what is happening to him.  He understands that he has sore bones and that everything we do for him is to make his bones better!

This experience has made me realise how strong you can be when you are faced these types of situations.  This is not only the case for me but also my amazing husband who calms me down, talks to me and most of all hugs me when I have one of those days where it’s all too much! It has made me realise that being a mum is the most rewarding job in the world and my two boys are my life – I would do absolutely anything for their happiness.

Leesa.  Mum to Harrison, 4, and Miller, 6.

They live in Melbourne, Australia.

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4 thoughts on “Juvenile Dermatomyositis and Polyarticular Arthritis – Leesa’s Story

  1. Thank you for sharing. We are going through something similar. We don’t have an exact diagnosis yet but reading your story helped egg me on and to keep persevering with my son’s multiple specialists.

    1. Hi Jemma, thank you for reading Leesa’s story and also reaching out. Like Leesa says – don’t give up. I hope you receive a diagnosis and therefore treatment very soon. I wish you and your son all the best on this journey. Nami xx

    2. Hello Jemma, thank you for your response – i wish you all the best in finding the answer for your son – it is a long battle and we are still trying to find answers for harrison’s skin condition and weight lose but he is in no pain and much happier! If you want to contact me further happy to chat to you even for support! Thanks Leesa

  2. Hello Jemma, thank you for your response – i hope you get answers very soon we are still searching for answers in regards to his skin and weight loss but his pain is under control and he is much happier! Keep fighting and i hope you get the answers you deserve for your son!

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