Food Allergy Awareness / Anaphylaxis
My heart aches this morning. Actually, it has been hurting all week. Over Thanksgiving weekend an 11 year old boy from West Palm Beach, Florida died from eating a bite of pound cake baked with nut (probably almond) extract. For those of us in the food allergy community, this is the fear we live with all day every day. A fear that we bargain with in our heads to dismiss as hyper-vigilant and over the top but one that we know is both real and necessary. It is with great sadness and a heavy heart that I even approach this story. I'm not here to report the news so you can go here to learn more. I don't really have anything important to say but I just couldn't let this go by without mention.
I want my words to be full of rage. WTF. Food allergies are on the rise. WTF are we doing to our environment that our bodies are now registering food as the enemy; an element to be feared within our own respiratory, digestive and circulatory systems? WTF are we eating and breathing that has changed the chemical landscape of our food sources and our own bodies?
I want my words to be full of frustration. How is it still possible that the parents of a child with severe asthma and a known peanut/nut allergy were not given the most up to date information for an emergency action plan by their allergist? This is not directed at the parents but at the medical professionals who didn't take this seriously and many of whom are less up to date on the current safe practices than most online mom's groups. If a known allergy is ingested do not rely on benedryl. This can mask the signs and symptoms of a severe reaction and make your child more comfortable but antihistamines cannot stop anaphylaxis. Use your EpiPen and call 911 or get in your car and head to the emergency room. Even if you think you need to just wait and see; that can be done from your car in the parking lot or the lobby of a hospital. I can't tell you how many times I've sat in the ER lobby waiting to see if a reaction warranted medical care. Sometimes it does and sometimes it doesn't. My son often has hives with no known ingestion so we really do have to just wait and see. I get it, not every reaction is a life threatening reaction. But you have to be prepared and make decisions quickly in case it is. Using the EpiPen is scary. I get that. I was terrified of it before I had to use it and even now I'm scared of using it again. But it works and it's in your possession for a reason. I'm not trying to replace your trusted physician but I do urge you to bring them this information and ask them to help you navigate your own child's action plan.
I want my words to be full of sadness. Oakley Debbs leaves behind two grieving parents and a twin sister and his whole future. I realize that this story hits close to home for me because as I browse the images flooding the headlines I recognize this child. I recognize my own family in the pictures of him vacationing and playing with his sister. I recognize the asthma and allergies. This could be my son in a few years.
I want my words to be full of understanding. Managing asthma and severe life-threatening food allergies is a lifestyle change that affects every single aspect of your day. There is no such thing as a drop off birthday party or soccer practice; we sit on the sidelines either in full view or waiting in our cars and hallways just in case. Solo play dates are few and require planning and a level of trust in another person that you never thought you'd examine. It's feeling like the crazy mom in the grocery store as you read and re-read labels and looking like the jerk mom who says no thank you when the kind worker offers your child a treat or a sample and having your child feel disappointed twice as the unaware adult presses follow up questions like "Are you sure, I bet he'd like it" or "oh come on mom, it's just a cookie!" It's never just a cookie. It's asking more of the adults in your child's life than you feel comfortable asking. It's asking more of yourself than you're sure you've got. It's adding in another layer to an already hard job. It's very isolating but it doesn't have to be. Reach out.
I want my words to be full of information. There is a lot of contrasting information being handed out by the medical community but the best and safest practice is to follow the EMERGENCY ACTION PLAN outlined on the FOOD ALLERGY RESEARCH & EDUCATION (FARE) website. If you are new to food allergies START HERE. Take it to your doctor and discuss.
Click HERE or on either of the images above to download a printable version.
I want my words to be full of support. If you're an allergy or asthma parent and you want to vent or ask questions or find support just email me. I get it. The Debbs are starting a foundation in their son's name in order to channel their grief into a worthwhile purpose and raise anaphylaxis advocacy through their new Red Sneakers awareness campaign. Oakley was an athlete and known for his affinity of red shoes so just like the teal pumpkin at Halloween has come to serve as a symbol for food allergies, this family hopes that red sneakers will raise the same awareness.
I don't know this family personally and there is nothing I can say or do to really help them but I will be ordering a pair of red sneakers today for my son in honor of their son. #Redsneakers
Red also happens to be the signature color of our favorite heart warrior, George, who could also use your prayers and support today. George is the son of my friend Elisabeth, and he's back at Boston Children's receiving treatment for some new heart issues that have come up recently and also raising awareness for CHD. George is one of our hero's. You can follow along on his journey here.