newly diagnosed?
Wondering how or where to get started?
We’ve Got You!
Receiving a diagnosis of juvenile arthritis or another childhood rheumatic disease for your child can be overwhelming and stressful. It can be difficult to know where to turn for support and how to navigate the challenges that come with managing a chronic illness. Cassie + Friends is here to offer you a supportive network of friends who truly get what you’re going through. Through our community, you’ll meet and hear from other kids and families who aren’t just surviving, but thriving with their rheumatic condition – and growing even stronger because of it!
The following guidance can equip newly diagnosed families with an action plan to ensure a successful first year and beyond. Most importantly, remember, you’re not alone in this journey. If you have any questions at all, reach out to us at info@cassieandfriends.ca – we’re always here to help!
1. Connect with other families:
Joining a support group for families affected by juvenile arthritis or another childhood rheumatic disease can be incredibly helpful. Not only will you have the opportunity to connect with other families who understand what you’re going through, but you’ll also have access to valuable information and resources on topics like medications, injections, school and more. Begin connecting with other families today by joining our private online support network.
2. Learn as much as you can:
The more you know about your child’s condition, the better equipped you’ll be to manage it. Take the time to read up on juvenile arthritis or the specific childhood rheumatic disease your child has been diagnosed with, and make sure to ask your child’s doctor any questions you may have. Begin your juvenile arthritis and other rheumatic diseases learning journey by checking out our ClassRheum Resource Hub.
3. Work with your child’s healthcare team:
Your child’s healthcare team is there to support you and your child through the management of their condition. Make sure to communicate openly and honestly with them, and work together to create a treatment plan that’s right for your child. Click HERE to learn more about how to build relationships with your health care team.
4. Prioritize Mental Health & Self-Care:
Managing a chronic illness can be stressful, so make sure to take care of yourself as well as your child. Make time for activities that you enjoy, and don’t be afraid to ask for help if you need it. Check out our Mental Health for Youth and Mental Health for Caregivers Tool Kits.
5. Get Involved:
At Cassie + Friends Society, you can connect with other families, attend events, participate in research and share your story through our community blog. Click HERE to learn more about how to get involved! Be sure to follow us on social media and don’t forget to SIGN UP for our newsletter to receive all the latest information.
top tips for newly diagnosed families
Written by families in the Cassie + Friends Community
Taking oral medication/pills…
Pro-tip: Don’t hide it in another food that your child likes or that is healthy for them/you want them to continue eating in the future. Rather, you want to put it in an oil-based product so that the pill doesn’t break down causing the taste of it to spread through the food. Choose a product that you don’t mind being “ruined” for them in the future i.e. Cheese Whiz
The smell of alcohol/alcohol wipes as a trigger…
Pro-tip: The smell of alcohol/alcohol wipes use to clean an injection site can become a conditioned ‘trigger’ for your child. To avoid this, try looking for odourless sanitizing products instead – and remember, alcohol wipes and syringes/needles don’t always come in the pack with the medication.
The smell of medication can be off-putting as well…
Pro-tip: The smell of coffee can help clear the harsh medication smell from your nose.
Speaking of needles…
Pro-tip: If you need to provide your own syringes, explore purchasing insulin needles. They come in different sizes which is helpful for different medications and doses (and if the medication comes in vials). Ask your pharmacist for help.>Pro-tip: If you have challenges giving injections at home (which most of us do) there are a few things you can do to help:
- Use numbing cream or a numbing patch
- Use a vibrating distraction tool like i.e. BuzzyBee
- Talk to your child about what they need to feel more relaxed and in control of the situation
- Create a medication sticker chart with built-in rewards
- Try other distraction toys like fidget spinners, pop-its, & even blowing bubbles which can help remind them to breathe
- Check out the Injection Support resources and webinars on the Cassie + Friends website
Accessing Numbing Cream…
Pro-tip: Explore getting a prescription for numbing cream so that you can submit it to benefits. This may vary depending on the insurance provider and province but it’s worth a shot when the alternative is paying full price for it right off the shelf!
JA Friendly Lunch Containers…
Pro-tip: If your child is struggling with swollen hands, it might be difficult for them to do everyday things that we forget to think about – like opening lunch containers. (i.e. Tupperware, Rubbermaid). Try the Sistema lunch cubes as it’s one easy latch to open the whole container and all of its components.
video resources
Écoutez l’enregistrement du webinaire en Français ici.
Our virtual education session just for newly diagnosed families offered foundational knowledge and insights into what to expect in the first 12 months (and beyond). Guided by Dr. Nadia Luca, Pediatric Rheumatologist at the Children’s Hospital of Eastern Ontario, this session covers medications/injections, communicating your child’s needs at school, and what support you can expect to receive from your pediatric rheumatology team.
Discussing the lived experience perspective is Abby Leschyson (Winnipeg, MB), parent speaker and Sophie Finn (Langley, BC), youth speaker. Dive into the recording to learn more about the importance of finding a support system, tips they’ve learned along the way to help themselves and their family cope, and an inspiring message of hope.
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