"My advice to other parents would be...get the answers and support you need"26 November 2019
Emma Luke’s daughter Olivia was diagnosed with juvenile idiopathic arthritis (JIA) at 3 years old. Here she shares her story and advice to other families with a child with arthritis. You can read 18-year-old Olivia’s story here.
When did you notice that something wasn’t quite right?
As a baby I noticed that Olivia didn’t crawl very much, and she was walking by about 1 years old. When she was 3, her knee was really swollen and she said it hurt, so we took her to the doctor.
They weren’t too worried as she seemed OK in herself, they told me to see how she was over the next few weeks and to give her Calpol.
Olivia was not a crier, but she would really cry if she banged her knee. We took her back to the doctors and they said keep going with the painkillers.
I knew that something was not right but the blood tests at Bedford hospital came back clear. Olivia was still no better and the pain was sporadic, I doubted myself but fought on.
After another appointment with our family doctor, we found ourselves at Milton Keynes orthopaedic department and the doctor took one look at Olivia and said you need rheumatology. We were rushed through in a matter of weeks to see the consultant, the amazing Dr Jenkins.
How did it feel when you had the diagnosis?
I was glad that I had my mum with me as I didn’t hear anything after I heard the word arthritis.
How was this even right? I broke down - she’s not old! I didn’t understand it and I’d never heard of children with arthritis before.
We were backwards and forwards to appointments to find ways to manage the pain and we had support from the amazing physio, Glenda Dalton.
I wanted Olivia to live her life and I knew she would find her level. She was determined to continue with exercise and performed at a high level with gymnastics despite the physical challenges and pain.
If I am honest as a parent, the younger years were easier – Olivia didn’t seem fazed.
Did things change as Olivia got older?
Olivia was a bit embarrassed about limping and went on methotrexate after the steroids stopped working. She was very sick on methotrexate and got on better with injections.
Then the decision was taken to review her condition and take her off the medication. After a year Olivia started to say everything really hurts and the consultant confirmed that the arthritis had spread and was now in her ankle.
Olivia cried when we went shoe shopping as she couldn’t have what her friends had, and she had to wear trainers. She loves trainers now and has a big collection.
At upper school Olivia seemed to be getting worse and I couldn’t understand how this was happening. Then she admitted she wasn’t taking meds and it hit me like a brick wall.
She went back on steroids and these caused her to gain weight, she put on 2 stone and didn’t want to go to gymnastics. Everything stopped.
How would you describe the support available?
It was these teenage years when Olivia needed more support but had no-one. There weren’t any groups for that age group, at a time when she was contending with growing up and didn’t feel she fitted in. It was hard, she didn’t talk about it, wouldn’t talk to teachers. She was getting very angry.
Olivia felt isolated as she felt like there was no one like her. You get mental health nurses for diabetes clinics, there’s not the same for arthritis. She’s lucky that she has support from her Nan, Granddad, boyfriend, other family, friends, me and her dad.
I was lucky as my mum was a phenomenal support during this time, also we still had support at Milton Keynes from our consultant and physio.
I did find it really hard as I’ve always wanted her to be proud of who she is and own it.
When Olivia shared her story with us, how did you feel?
Since starting college, Olivia has said she was wants to stop hiding and that it’s time for people know what it’s like living with arthritis.
I’m so proud of her and she’s still determined to give back, at university she wants to do sports rehabilitation to help others like her.
My frustration is at the lack of help and understanding.
I got a small amount of Living Allowance for her which helped with small things, like shoes, as her feet roll, and she has flat feet. When we reapplied, we were turned away and for PIP she missed out by margins, even though she was flaring when we went to the meeting.
In the notes they mentioned she seemed very positive and in good mental health. Olivia got in touch with them and told them she’s not the type to cry in front of strangers, she got so angry and we are still waiting for the review.
How is the future looking?
Things are a little uncertain now. We were given the choice to either move to adult rheumatology at Milton Keynes or be referred to Oxford. Olivia’s still flaring and has been on a combination of methotrexate and anti-inflammatory medication for many years.
We feel it’s time for a fresh pair of eyes and different treatment options, so we’ve decided to be referred to Oxford.
What advice would you give to other parents?
It’s really important to make sure you have someone to talk to, as you need someone as much as your child does.
Remember you know your child, keep fighting to get answers you need and don’t be afraid to ask, if you think something is not right.
Find support online and ask any questions you have, there’s lots out there from Facebook to Instagram and someone will be able to help. For example, Olivia wanted a tattoo and she researched it, asked questions and checked what would be safe.
I’d say don’t stop your child, everyone is different, let them find a level of what they can do and what might be difficult. Olivia never said no, and she’s found what works for her.
People don’t know enough about arthritis and how awful it can be. Your adverts are fantastic and it’s Olivia’s dream to see someone her age on any future ones. To show what it’s like trying to get out of bed, get to school and go to college. This would show the reality and that you can still live your life at the same time.
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