Life is full of uncertainty, but parenting a child who could die if he eats the wrong thing takes uncertainty to a new level. I’ve been frightened to use my son’s EAI (epinephrine auto injector) and have second-guessed the need – “do we?” “don’t we?”— when he ate the wrong thing.
My hope is that there will soon be a cure for food allergies, since my young adult son with multiple food allergies is not interested in exploring OIT or any other immunotherapy options. Recent research and FDA breakthroughs give me hope that a cure that could protect my son's life from his allergens is on the foreseeable horizon.
Until then, if I could replay my two decade journey as a food allergy mom, here are five things I would do differently:
Be more intentional about encouraging my child to become my “food allergy management partner” over time. I would start early, be consistent, and be gently gradual in my approach.
Never second guess using your epinephrine, always following your Emergency Action Plan.
Seek more help from others on the same journey (e.g., actively seeking support groups, attending conferences, joining relevant Facebook Groups.)
Use technology to make allergic living more convenient. There are great apps/websites and medical devices on the market such as Allergy Amulet, Equal Eats, Spokin, WeBelay, among others, as well as my own company’s app, Allergy Force. Tech tools like these can help you fill in food allergy coverage gaps and help you navigate life with food allergies with greater safety and confidence. Just remember, though, technology works with human judgement — it does not replace it.
Research evolving therapies deeply — like OIT, EPIT, SLIT, new Biologics — and evaluate if they’d work for my child and family. I’d be steadfast and methodical in researching and would definitely pursue a therapy if I felt it was right for us. And, assuming one was right for our family, I'd jump on it sooner rather than later while my child was still small, portable, going with me everywhere. Once activities and sports commitments kick in full force, finding the window to pursue this type of treatment gets harder.
I would attend FARE and FAACT-sponsored conferences with my son when he was a pre-teen or a ‘younger’ teen. For example, taking him to the annual FARE Summit or the FAACT Teen Retreat would have helped him find an understanding community of peers with similar allergy challenges. I think it would have inspired him to be more of an advocate for people with food allergies — for himself and for his peers.
Hindsight is 20/20 and you need to look ahead and move forward in life.
My hope is that by sharing some of my personal ‘lessons learned’ over time, your own parenting journey will be a smooth one.
About the Author: Gayle Rigione is CEO and Co-founder of Allergy Force, the food allergy app. She’s also an allergy mom. She’s lived the heart stopping moments when her son ate the wrong thing, second guessed reactions and spent the night in the ER. These experiences inspire her to create tools for people with food allergies that make life safer, easier. Whatever you do, do it with a full heart. Audentes Fortuna Iuvat
Photo Credit: Unknown
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