Nicola’s 5 Top Tips!
- Get support and raise awareness! Support is vital when dealing with something like this. Up until now our experience had been very isolating. When Without Wings put us in contact with other families in a similar situation, I therefore decided to do something proactive and set up a support group. You can find our Facebook page here: https://www.facebook.com/JuvenileIdiopathicArthritisIsleOfMan/ We hope that by raising awareness our children will receive the help and understanding that is needed as they grow older.
- Cold cloths and cooling pads are a real life saver when Isaac’s knees become inflamed, as is very gentle massage.
- Take the pressure off – swimming is essential for Isaac as it takes all the pressure off his joints and is also something nice we can enjoy as a family.
- Find the right level of medication – This can take time but when it does happen it can be a complete life changer. It’s been amazing to watch Isaac’s pain diminish. We’re now seeing him for the cheeky little boy he really is!
- Cuddles are also essential too! Lots and lots of them!
NICOLA AND ISAAC’S STORY
As the youngest sufferer of autoimmune arthritis on the Island, Isaac Megson and his mother, Nicola, were invited to choose the name of the Without Wing’s bird. They chose Lula! Isaac, aged 3, was diagnosed with JIA aged only one.
“We first noticed something was wrong with Isaac when he started walking at 14 months. He struggled a lot, and in the mornings his left knee seemed very painful and swollen. The swelling would subside during the day, which meant that despite many trips to the doctor’s and even A and E, we were repeatedly told they could see nothing wrong.
In the end we had to video the severity of Isaac’s lack of mobility. It took seven very difficult months before he was finally diagnosed and we were referred to Alder Hey.
It was here where he was prescribed strong painkillers and steroid injections into his knees. Unfortunately, the arthritis quickly spread to numerous joints in his small body, including his ankles, toes, left arm, neck, shoulders, head and jaw.
It was devastating. By July 2016 he couldn’t move and we had to do everything for him. Just dressing him was a huge challenge as any movement at all would cause him a lot of pain. There were always tears, and not only from Isaac. Seeing your child in so much pain is so difficult. I would have done anything to have taken it away from him.
In August 2016 we were told he now had Polyarticular Arthritis and he was prescribed Methotrexate. So far it has been our miracle drug. Isaac has gone from being very quiet and subdued to being a cheeky, happy boy full of joy. He still has bad days and still gets swellings in his lower body that require steroid injections, but before he was in so much pain he found it hard to communicate. Now his vocabulary and speech are much improved. ”
Earlier this year, Without Wings launched a press release and also our website. The response was overwhelmingly positive, most notably with many families living with JIA coming forward who had, up until now, experienced no support on the Island. When we asked how we could help, the answer was unanimous: awareness! Both Isaac and Rio’s stories have therefore been part of Without Wing’s February JIA awareness campaign.
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