I am slightly embarrassed to share that up until last year, I did not realize that kids could actually get arthritis. That said, this lack of awareness is not uncommon and given that March is Juvenile Arthritis Awareness Month, it is a great time to share information about this condition that is much more common among children than you might think. While many people think of arthritis as an “older persons” disease, the fact is that over 24,000 children in Canada have juvenile arthritis. Imagine….
Children and teenagers can be affected by a variety of forms of arthritis, any of which can have potentially devastating effects on developing bodies. Arthritis is also one of the more common disorders resulting in chronic disability in children and teens in Canada.
Juvenile arthritis is serious stuff, and as parents, it is important that we understand enough about it to recognize signs and symptoms should they present in our own children.
1- Juvenile arthritis is not usually the first ‘suspected’ diagnosis – Don’t let it get overlooked
Whether it is due to lack of awareness, or because symptoms can be explained by other potential causes, Juvenile Arthritis is often overlooked by doctors when children are brought in with symptoms. This is important to know because as parents, if we are aware of the signs and symptoms, we can ask “Could this possibly be juvenile arthritis?”
2- Recognize the signs and symptoms of Juvenile Arthritis
It’s important to know that very young kids may not verbalize that they are in pain, they may simply ask to be carried more often (especially in the morning). A crooked knee can also be a symptom. Older kids may have difficulty in gym class and those with finger and wrist arthritis may struggle doing up buttons, opening jars or even doors. It’s important to realize that we often think pain can be due to another factor – a sports injury, a wrong move or growing pains. That said, if pain persists, it is important to investigate and because there is no lab test to diagnose arthritis, if it is suspected then it is recommended to consult a qualified pediatric rheumatologist.
I had the opportunity to interview Winnipeg mom Nicole Barry who shared with me that when her son Conor first began complaining about foot pain, she thought maybe his shoes were getting too small (as many moms might think) and went out to get him new shoes. When that didn’t help, she took him to be properly fitted for high quality athletic shoes. She then took him to a sports medicine clinic where Conor was X-rayed and nothing showed up so it was passed off as growing pains. About a month later, Conor would sometimes be crying from the pain and his mom knew something was not right, especially given that Conor is not a complaining type of kid. More X-rays were done and doctors saw nothing but put him into a cast in case there was a ‘hairline fracture’ that they could not see on the X-rays. When the pain was getting worse, Nicole intervened to have the cast removed early. They found that Conor’s foot was swollen and discoloured, sohe was given blood tests. When his blood results came back, the doctor feared bone cancer and he was admitted immediately to the Children’s hospital for nearly two weeks of testing where he was checked for a whole slew of conditions. Conor was finally diagnosed with juvenile arthritis but it took another 6 months to determine that he had a particular form of juvenile arthritis called juvenile ankylosing spondylitis.
3- Treatment is Available
There are many forms of juvenile arthritis and there are also a variety of treatments available. Nicole shared that after some trial and error, Conor found a medication that has helped him. Not only is he in less pain but he is at the point that he will soon be allowed to exercise again. She also shared that various treatments were attempted before the right one was finally found. Should your child be faced with a diagnosis, be ready to go through this process and remember to make notes about reactions etc. to share with the doctor to ensure that your child’s treatment is appropriate for him or her.
4- A diagnosis of juvenile arthritis will undoubtedly affect your child’s and your family’s life but there are ways of adapting to “the new normal’
Nicole shared with me that there were definitely lifestyle changes that have affected the entire family as well as, of course, Conor himself. Conor wasn’t a huge athlete but he did enjoy playing hockey, soccer, etc. This had to stop when he was originally diagnosed. He also walked on crutches (he refused to use a walker) and wore a ‘boot’ for a while. Unfortunately, he was teased and bullied which made the adjustment more difficult. Nicole explained that at first Conor was in a bit of denial about the diagnosis but over time he met other kids going through similar things and has he accepted that this is his ‘new normal’. He recently changed schools, is thriving, and he even spoke recently in front of his entire class about living with juvenile arthritis. Great job Conor!!! Nicole credits this newfound ‘peace’ to the fact that Conor had made connections with other kids he met at an Arthritis Society luncheon and realized that he is not alone. She says that these get-togethers can be really helpful for kids who are dealing with juvenile arthritis.
Nicole has also changed career to reduce the stress in her life so that she has the required energy to deal with this ‘new normal’. That also means making sure to lead a healthy and active lifestyle so she can be better available for Conor’s needs in a way that is different than before. Rather than resenting these changes, Nicole is embracing them. “Some people have it so much worse…this is our new normal.”
5- As with any diagnosis, keep meticulous records.
Nicole explained that although she and Conor’s dad are divorced, they shared a binder with meticulous notes about Conor’s health: medical visits, protocols, treatments and reactions, if any. The binder is passed back and forth between them, depending on where Conor is staying, and that this binder is a guide and a bit of a lifeline. Regardless of family situation, keeping this type of binder / healthy diary is actually a good idea for every child (and adult!) but especially so when a child is faced with a difficult diagnosis, many tests, etc.
6- Trust your ‘Mommy instinct’ even if you already trust your doctor.
Nicole has tremendous respect for, and trust in, Conor’s doctors. That said, the diagnosis was due to the fact that she knew her son’s character well enough to know that Conor is not normally a ‘complaining kid’. She knew that when he kept crying about the pain that something was really up and kept pushing for further testing. It was thanks to her own intervention that Conor’s cast was removed early to reveal the swelling and discolouration. She strongly advises that even if you feel shy, if you are wondering about something, ASK YOUR DOCTOR. Trust your instincts.
7- Use the resources available to you
Nicole shared how helpful the Arthritis Society luncheon was. The Arthritis Society website is also a great resource and should be consulted if you have any questions or concerns about juvenile arthritis, or have been recently faced with the diagnosis of a loved one.
8- Focus on the positive
There is no doubt that a diagnosis of Juvenile Arthritis is not one that anyone wishes their child to receive. That said, it is important to be aware of the signs and symptoms and to know that there is treatment available. As mentioned, untreated, juvenile arthritis can lead to some pretty devastating and life-long illnesses. With treatment, affected children will have altered lifestyles, but can go on to lead full and productive lives. It is important for parents to talk with their child’s doctor to find a treatment option that works best for their child’s condition and unique needs.
Once again, March is Juvenile Arthritis Awareness Month and is the perfect time to generate awareness. Please share this information (or even this article) with others. You can also click here to visit the Arthritis Society for more information.
Disclosure: This post is sponsored by AbbVie Canada. All opinions contained within are my own and cannot be bought 🙂