Abbie
"Make sure you always advocate for your child. As a parent you know them best and, if you think something isn't right, keep asking until you get answers."
Today we have a very special story to share. It is Abbie's story. Abbie is one of our young volunteers and she and her mum Sam have been closely involved with Juvenile Arthritis Research from the early days. Abbie came up with the idea of our Little Box of Hope support packs which have helped hundreds of families. Abbie still helps to send out every pack that gets sent to younger children with Juvenile Idiopathic Arthritis (JIA). Abbie's story is powerful, poignant and one where lessons can be learnt to help other children in future.
Over 10 years ago we received the news that no parent wants to hear… our 1 year old baby had a chronic disease. Abbie had a fall from the sofa at 13 months old which resulted in a swollen knee. We thought it would be an easy fix. Unfortunately we were wrong. After many X-rays and procedures under general anaesthetic to drain the fluid from the knee over a 6 weeks period, Abbie was then sent to our nearest specialist children's hospital as an emergency admission with the suspicion of leukaemia. After a horrendous few days, another general anaesthetic, many ultrasounds and blood tests, we were finally given the diagnosis of Juvenile Idiopathic Arthritis (JIA).
At this stage it was only affecting one knee and we were assured that in a child so young a steroid injection into the joint would most probably be all that was needed. We returned to the children's hospital 4 weeks later for Abbie to have the steroid injection. Within a few days some of the swelling had started to reduce. For us, this was the only visible cue for us to look at for improvement as at no point had Abbie stopped walking, crawling, bouncing on the trampoline etc, it had not affected the movement of her knee at all, neither had she complained of pain or appear to be in pain.
A few weeks went by and we thought all was fine, then Abbie started dropping things. She couldn't grip anything with her right hand and her thumb was swollen. Over the following days we noticed her ankle had started to swell and her knee was swelling again too. By this point she had been referred back to our local hospital. We got in contact with them urgently and they saw Abbie straight away. They started her on methotrexate, initially oral liquid but she would vomit it straight back up, so injections were started. Never as a parent did I think I would have to pin my child down and inject her on a weekly basis! We did have the help of some lovely community nurses who definitely made things easier for those first few weeks.
The monthly blood tests could be challenging but the play therapists and amazing nurses at our local hospital were fantastic and always tried to make things fun. As the months went on, the injections and blood tests got easier and the constant appointments became less.
"She did anything and everything she wanted and unless you knew her history no one would know she had JIA!"
Over the following few years we had an occasional flare that would require steroid joint injections, oral steroids and a slight increase in medication but Abbie was a pretty normal child, she did anything and everything she wanted and unless you knew her history no one would know she had JIA! Abbie was diagnosed with a few other things over the years but none directly related to the JIA.
We thought we’d had quite an easy journey with JIA but then Abbie had a flare that our local doctor couldn't get under control so we were sent back to the Children's Hospital that originally diagnosed her. Abbie was given oral steroids whilst we waited for an appointment. This is where all the problems started. When we attended the appointment at the Children's hospital, thanks to the oral steroids Abbie was on, she seemed to be in great shape. The doctor assured us that there was no active arthritis and stopped all medication. Abbie ended up struggling to walk and crying in pain. Our local doctor asked for scans to be performed which showed active arthritis and then we were sent back to the Children's Hospital. The doctor there continued to insist that her arthritis wasn’t active and that the pain must be mechanical issues and not arthritis.
At this point we requested a second opinion. The second doctor at the Children's Hospital confirmed that it was indeed active arthritis and restarted all medication including oral steroids. Unfortunately she wasn’t able to take Abbie on as a patient as she was just called in for the second opinion so we are sent back to the original Children's Hospital doctor.
We’ve ended up repeating this process a further three times where one doctor said there was no active arthritis and the medication was stopped and another doctor disagreed and restarted medication. During all of this our fantastic local doctor would always advocate for Abbie.
Unfortunately 5 years ago, this lovely doctor retired and we were left completely in the care of the Children's Hospital who stopped all medication. No matter how much pain Abbie was in, and whether there was any swelling or not, they put everything down to mechanical pain. During the past year Abbie was told that everything she was suffering was largely psychological. The pain, the swelling, the inability to walk some days due to pain, the skin rashes, the constant mouth ulcers and many more symptoms were all dismissed. We were told her JIA had resolved and she needed to learn to live with whatever symptoms she had. After leaving that appointment with both Abbie and myself in tears, we decided we needed a completely fresh look at Abbie’s symptoms. We began researching and contacting hospitals across the UK. We were willing to travel anywhere just to get answers!
"When we finally got the results it showed our worst fears and something that really shouldn't have ever happened."
During this time Abbie’s condition worsened. Her jaw became so painful that she was unable to open her mouth more than 15mm. We had to really fight to get her jaw looked at properly. An MRI was finally performed 3 months later thanks to our wonderful dentist. When we finally got the results it showed our worst fears and something that really shouldn't have ever happened. Abbie has substantial damage to the bones in her jaw caused by long term, untreated JIA.
Abbie recently had surgery to try and alleviate the pain and allow her to open her mouth. She now faces the possibility of many more surgeries over the next few years just to be able to open her mouth. When she reaches adulthood and her body stops growing, she will have to choose if she wants jaw replacement surgery. As I write this, Abbie has now spent 8 months eating only soft foods such as noodles and soup. Although the recent surgery has allowed her to open her mouth more it hasn’t helped the pain. We are still searching for solutions and thankfully we have the most amazing Max Fax consultant that is doing everything he can for Abbie’s jaw.
Due to the most recent MRI findings, Abbie was immediately started on biologic treatment for active arthritis. That meant going back to weekly injections and monthly blood tests. Unfortunately that won’t repair her jaw but hopefully it will prevent further damage anywhere else. We won't know for sure until we get this flare under control. Throughout Abbie’s entire JIA journey she has always remained positive and upbeat but these last few months have been very challenging for her, both mentally and physically.
She has lost all trust in the doctors that were supposed to care for her and is very angry. This is a new challenge that we will be dealing with over the coming years. Abbie’s arthritis being active was missed as she had always had full movement in all joints and minimal swelling. As she has always lived with pain, due to being diagnosed so young, she always powered through until the damage made that physically impossible.
To any parents with children diagnosed with JIA, please don't be scared by Abbie’s history. This is a very rare occurrence but please make sure that you always advocate for your child. As a parent you know them best and, if you think something isn't right, keep asking until you get answers.
And a few words from Abbie...
I have lived with arthritis as long as I can remember. I have always found it difficult being different from other children my age, especially the constant appointments and missed school. When I started volunteering for Juvenile Arthritis Research, I wanted to raise awareness that kids get arthritis too and it made me feel more confident speaking about JIA.
The last few years have been difficult and I felt like the doctors just never listened to me. No matter how much pain I was in or how much I was struggling I was just sent away with no answers as to why.
The last few months, I now have answers but I'm even more angry that the doctors didn't listen to me before and scared about what I may face in the future.
If you would like to share your JIA story, please get in touch.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkJIA.org
For support at school, please visit our Parent Zone. Schools can request an information toolkit to support children and young people with JIA in their setting at www.jarproject.org/toolkit
Many of the resources we have developed can support children and young people at school and with explaining their condition to others such as our "I have JIA" cards. You can access these here.
For support with Mental health and needle phobia, please see our Mental health and wellbeing page here.
You can also help us be there to make life better for children and families affected by JIA by supporting our work at www.jarproject.org/fundraising
