Juvenile Arthritis Awareness Month – Conor’s Story

Paula — Thu, 22 Mar 2018 11:30:13 +0000

This Juvenile Arthritis Awareness Month a Winnipeg mom is sharing her son’s journey with juvenile arthritis. Diagnosis is rarely straightforward and there are multiple misconceptions about arthritis in children. Although the learning curve is steep when your child receives a diagnosis, there are resources available. This is Conor and Nicole’s story, from diagnosis to finding support and learning to live with the disease. Conor was 8 when he came home from school complaining of a sore foot. His mom thought his shoes were too tight and bought him a new pair, but the pain didn’t go away. Eventually, she took him to a sports medicine clinic. When they couldn’t see anything wrong, they assumed his injury was a hairline fracture and put a cast on his foot. But the foot eventually came out of the cast looking way worse than when Conor had started. It was swollen, purple and his pain kept getting worse. Nicole and her son persisted in seeking answers. Eventually a blood test revealed an abnormality. The family worried about cancer and indeed that was also investigated. When a diagnosis of juvenile arthritis came back, they were shocked. “I remember feeling almost relieved when we found out it was arthritis,” said Nicole. But at the same time the family had a perception of arthritis being an older person’s disease. And they didn’t know all the side effects and systems that can be impacted. There are several different types of arthritis. Conor has ankylosing spondylitis, a type of arthritis that affects the spine and sacroiliac joints. It is an autoimmune disease which means the body attacks healthy tissue. “Arthritis is not just creaky joints.” Children and teenagers can be affected by a variety of forms of arthritis, all of which can have potentially devastating effects on developing bodies. Age of onset for Conor’s type of arthritis is typically a good deal older than Conor is. Conor’s mom knows of only one other child with the same form of arthritis in Manitoba. March is Juvenile Arthritis Awareness Month – an opportunity to help bring awareness to a condition many stigmatize and consider an “older persons” disease. Juvenile arthritis is a chronic autoimmune disease. The juvenile part is just as it sounds – arthritis impacting children. From the foot pain incident to diagnosis, the time frame was about nine months. Nicole, who also owned her own brewery at the time, set out to find all the educational resources she could. She quickly connected with The Arthritis Society, calling it an amazing asset. Additionally, she hunted down Facebook groups, and other online groups to learn more. Conor is now ten years old and in grade five. He has hearing problems and is being tested for Crohn’s Disease, an autoimmune inflammatory bowel disease, now as well. He struggles with chronic pain. The year of his diagnosis he missed over 100 days of school. But, as Nicole notes, school is not just about academics and although he managed to stay on top of his grades, she worried about all the social interactions he was missing. Now that he is on medication that works, this year has been much better attendance-wise. Nicole notes that the invisible nature of this disease means others can’t see the pain and fatigue. But you have to trust your child. There are days when Conor calls from school and he simply needs to come home and rest. For Conor’s family this diagnosis has been hard and emotionally draining. But they have also chosen to approach it together as a unit, and they have made several lifestyle changes to help Conor succeed and thrive. Nicole says the entire family has adopted a healthier lifestyle. She sold her brewery and paused her MBA studies. As a mom of a child with a chronic illness she must be on top of managing his health care needs. That can be almost a full-time job on its own. “Knowledge is power and that was a big deal. To be present in his heath care was a huge thing for me. I spend a large chunk of my day managing his health care.” “He’s doing well in school. but he needs to know this is the new normal.” Nicole’s advice for other parents Humour is a huge source of strength for the family and it helps them to get through the hard days. Nicole also searches out the silver linings in the situation at hand, saying the entire family has become his advocates. I couldn’t be prouder of my older son. At 13 he’s been an amazing brother and champion for Conor too. Looking to social media and Instagram helped her see how others cope with a disease. “Use it or lose it” is a common theme she says. Meaning keep striving to use the joints that are affected as much as possible. “We all have something. We all have an issue, an obstacle or a roadblock. That doesn’t mean you can’t have a wonderful life.” A few more things about Juvenile Arthritis Awareness Month: Arthritis is one of the more common disorders resulting in chronic disability in children and teens in Canada. About 3 in 1,000 children have arthritis. There is no single test that can diagnose childhood arthritis. For more information and resources, check out The Arthritis Society website: http://bit.ly/2F6GiMz This post has been sponsored which means I received compensation. My opinion is all my own and it is also truthful.

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Frustration and No Answers Yet on This Ankle #health

Paula — Wed, 16 Sep 2015 22:14:26 +0000

I am frustrated! With a capital F. One of my daughters is still in pain and we have no clarity as to what exactly is going on. Her ankle pain waxes and wanes a bit. Remember when I mentioned that months ago we thought she could have juvenile arthritis? There are brutal days where she limps a lot and days where it seems less obvious. She had two great weeks at end of August where camps were over and her ankle didn’t hurt much. But this week it was a mess again. In July, it swelled up like a football after horseback riding dismount one day. Then it was sore and she hobbled a bit again. But we had a couple of great weeks in August where it didn’t hurt much and then this week I had her walk home from school and she called after making it half way to say it was hurting. So I went to get her and sure enough it was swollen again. We have an MRI scheduled for October. That was set up back in June. Nice Waitlist. It could be juvenile arthritis, but the paediatric ortho specialist indicated she should remain active and keep doing sports as much as possible. So that’s what she’s doing. The mobility has definitely been impacted. But I am not really sure how long that has been going on for. Payton (on the left in the photo above) just finished a two week performance of Rapunzel and I watched it a few nights. I love watching her perform. She has a wrap for her ankle and I asked her several times how it felt during the performances. It hurt after but she really pushed through. Before that she had months of rehearsals. This kid is a massive trouper that way. It’s a bit hard to get a handle on things sometimes because of that. She broke her arm twice as a little one. I think she was about 5 the first time. She fell at the park while walking and carrying a couple of things. She braced herself and a bone near the elbow snapped. This is exactly what I recall. I was watching my two kids and a friend’s baby that day. The initial break was clear she was hurt because she hollered loudly as soon as it happened but then she got super silent and went the exact opposite. I think her anxiety was starting to show even then because I told her we’d likely need to go to the hospital to get the arm looked at and it was right about then that she stopped hollering and got super quiet. She told me: “My arm is fine. I don’t need the hospital.” I recall that clearly. But at home we knew she had a break because my husband handed her a popsicle and she couldn’t hold it. AT all. So her pain tolerance is sometimes messed up by her aversion to hospitals and needles. But the X-rays showed the break that time. [tweetthis]How does your child handle pain? #specialneeds #health[/tweetthis] This time we’ve had numerous X-rays and it’s not registering that anything is broken. What’s compounding that is juvenile arthritis, and arthritis in general, is hard to diagnose. She hasn’t really complained about any pain anywhere else. However I know what my gut says. Also the longer I watch as a Mom with my Mom MD lens on the more I feel there’s something not right about a few other things. Her exhaustion is chronic. She is always tired. She just turned 14 and she could fall asleep every night at 8 p.m. and sleep for 12 hours easily. She’d be happy to do that actually. But that’s been a constant since she was 6. It’s a lot of sleep this child needs. I used to chalk that up to her being anxious. I’d tell people she worries so much during the day that she is exhausted and out like a light by 8:30 p.m. In fact if I want to watch a movie on girl’s night sometimes this darling girl will leave the room at 9 and tell me – I want to go to sleep. Also she doesn’t hold a pencil easily sometimes and the other night she picked up a prop to carry off stage and her hands were almost stuck in fists afterwards. Then today she was also working on putting a toy together for me and she stopped a couple of times stating her hands hurt. SO, as much as I’d like this all to go away, it isn’t. And I’d like some answers soon. It is stressing us all out. Do you know anyone with juvenile arthritis?

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Juvenile Arthritis Awareness Month – Conor’s Story

Frustration and No Answers Yet on This Ankle #health