Evan’s Complete Toolkit

This is an overview of Evan's favourite tools and resources for managing chronic pain. We have tried countless products but these are our most used.

These are not affiliate links. We do not make money for sharing these tools.

Pain Management Tools
We’ve explored countless products aimed at pain relief and found these to be particularly effective:

  • Mountain Medicinals Pain Relief Now Extra Strength Roll On - BUY

  • KaLaya 6x Extra Strength Pain Relief

  • Paediatric Wrist/Thumb Brace

  • Tensor Bandage for wrapping his ankles at night.

  • Kinesiology Tape - While this offered Evan great support, we discontinued its use due to a reaction to the adhesive. It may be beneficial for those without adhesive sensitivities.

  • Foot Roller - one of Evan’s favourites after a long day - BUY

  • Mini Massager - BUY

  • Foot Support for the Carseat - BUY

Food
Food has been an important tool in managing Evan's health. We loosely follow a plant-based, anti-inflammatory diet. Strictly sticking to it can be challenging, especially around holidays and birthday parties, but there is a noticeable difference in his pain levels and overall comfort when we follow these food choices closely.

Assistive Devices
Ankle Foot Orthotics (AFOs) - one of the best tools in his toolkit
Glasses

Supplements
Consultation with a healthcare provider is crucial before starting any supplements. Based on our experience:

  • Vitamin D: Essential for everyone, especially in Canada, with an increased dosage for Evan.

  • Iron & Magnesium: Supplementation has been beneficial for Evan, addressing specific deficiencies.

Prescriptions
Evan is on a couple of prescriptions for joint pain and neuropathic pain. These have come with some tough side effects so having a good doctor and pharmacist for support has been critical. These medications have significantly improved his ability to engage more fully in activities with much less pain and for longer periods.

Medical and Therapy Care Team
Finding a dedicated care team has been both challenging and essential. Early in our journey, a fellow patient advised us that few doctors would have deep knowledge of this condition and said we need to find one who is willing to learn with us. Evan’s core support network now includes a physiotherapist, paediatrician, and GP, supplemented by various specialists we consult as needed.

A Supportive School with a Solid IEP
School is second only to home in terms of where kids spend most of their time, making it a critical part of Evan’s Toolkit. After navigating schools with minimal accommodation, we discovered one that provided the support Evan needed to thrive! I’ll be sharing insights, tips, and tools from his IEP on our blog and social media.

Movement and Exercise
Physiotherapy and mindful movement are considered the gold standard treatment in managing hypermobility-related chronic pain. With a strong drive to keep up with his big brother, Evan is motivated to keep strong. We lead him towards low-impact activities like swimming and biking, which are gentle on his joints. We've creatively integrated his physio exercises into playful games. Emphasizing the importance of exercise and movement helps maintain strength and manage pain, with careful pacing to prevent overexertion and injury.

Distraction
Distraction is key to our pain management strategy. Activities such as art, gaming, Lego, laughter with family, and baking are invaluable tools in our toolkit, offering a shift in focus and a sense of normalcy even on the most challenging days. For other superheroes, perhaps it may be music, puzzles, reading, or other interests that provide the comforting distraction.

Rest and Pacing
We are learning to pace our family's activities and Evan's days, ensuring he checks in with his body and takes regular rest breaks. This isn't always easy for an energetic boy keen to keep up with his peers, but we've found effective strategies. The goal is for him to enjoy his favorite activities more sustainably, ultimately leading to more fun and less downtime. It's a delicate balance, one we're still mastering, but we've already seen a significant difference in managing the boom and bust cycle.


Updated February 2024