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Food Allergy Awareness / Anaphylaxis

December 1, 2016

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.

http://www.foodallergy.org/faap
http://www.foodallergy.org/faap

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.

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11 comments:

  1. It breaks my heart to hear stories like this. I am extremely frustrated as well - why do so many kids have food allergies? When I was growing up, we had one kid in our entire school who had asthma but no one had any kind of food allergy. Now it seems everyone does. My son just has seasonal allergies which then causes him to react to certain fruits like apples and peaches but his fruit allergy is not serious. As far as kids who have other food allergies go, I swear it has something to do with the way food is grown and processed these days. Now that everything is genetically modified and sprayed with tons of pesticides - of course there is going to be a problem! Why does our country allow this to be done to our food? Other countries don't even allow food coloring yet we allow almost anything - because it's all about money. I could go on and on...but it is great that you wrote this post. It could really help someone in an emergency.
    Shelley

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  2. I with you in your frustration. I have a grown child who has had a nut allergy since 18 months old. She grew up knowing to question baked goods, etc. But now there are so many other places to be concerned about, skin care items, cosmetics as well as foods that use absolutely minute amounts of nut products in their goods that add no value whatsoever. And of course eating out is fraught with concern as well. Thankfully she hasn't had many reactions and they've been relatively mild, but you always worry about the next time. Even though she's grown, I'll never stop worrying.

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  3. This is heart breaking. My 5 year old son just got diagnosed with a nut allergy this week. We are still waiting for an appointment with an allergist. It has been a nerve-wracking few days trying to learn about this new world we have to navigate. Thanks for the info.
    Sara

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  4. Thank you for this post. We just met with an allergist for my daughter on Monday and the whole experience was definitely education for me. Knowing how to respond is so important, and my heart aches that for this family.

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  5. A friend of mine posted the other day about antibiotic use perhaps contributing to the increase in food allergies.

    What annoys me is when parents of kids who don't understand or have to deal with food allergies blame the parents. Like my kid has a peanut allergy because I am too sanitized and didn't expose him to the allergen when he was little or I was pregnant or that it is somehow my fault. Had I just been a 'better' parent and exposed it to him earlier this would all be fine. I am to blame.

    In my head I keep thinking its something he will grow out of, like most childhood things, but the reality is this story could be my son.

    https://www.sciencedaily.com/releases/2016/09/160901183744.htm

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  6. Very well said and so incredibly tragic. I feel for any parents having to deal with these issues. Prayers,

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  7. This story breaks my heart and I have been following it closely. I too have a son who could be Oakley with food allergies. I have so many of the same emotions: anger, fear and such profound sadness. No family should ever have to lose a child. Thank you for your wonderful way of putting feelings into words.

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  8. I read this last night during a breastfeeding session. Things always seem worse in the dark of night and this just struck me so hard. I hate that you deal with this fear on a daily basis. Thank you for being an ear to listen and an advocate for food allergies. I didn't get it fully and I'm sure others didn't either. Thank you for yiurbhonestky always.

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  9. Thank you for posting this. The news story is heartbreaking. I have a teenager with a walnut/pecan allergy and we do have an Epi-pen at school, at home, etc. However, I don't think I really understood the limits of Benadryl until I read this.

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  10. Epi pens and inhalers have been a part of our family life since my daughter was very young. She ran XC and track in HS with an inhaler in her hand. Coaches and team parents "in the know" should an issue arise. We carried a nebulizer with us everywhere. To meets and vacations with a car converter and battery back ups where electricity wasn't available. With a converter when we traveled abroad often ...made post 911 security a ton of fun. We got special permission for her to wear her medical alert bracelet at sporting events in HS because "jewelry" isn't allowed. All of this and more so life could be "normal" and she could do all the "normal" things without seeming different from her peers. She is 25 and she has learned to manage drug and food allergy issues, asthma and celiac disease to be on her own. It can be done. It isn't fun or easy but she is proud that she finished her college degree having lived away and included sorority life and working as a campus tour guide as part of her college experience. This story breaks my heart. It can be so quick. I sleep with my cell phone when she is away. I think I spent to many years on alert but it is worth it. It is amazing how smart our children can become about these things!

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  11. I have lived my whole life with food allergies. I've been fearful of foods for as long as I can remember. They seem to run in my family as my mom, grandmother and numerous aunts, uncles and cousins all have food allergies. My 5 year old son was diagnosed with food allergies when he was 15 months old. He had been breaking out in eczema and hives since he was around 4 'months old. We can't stress the importance of epinephrine enough. Thank you for sharing this story. It's heartbreaking. I can't imagine what that family is going through. I will continue to be the crazy lady who checks all the food labels. Because that keeps us safe. My son had an anaphylactic reaction the beginning of August. His first one that remembers. He is terrified of food, drinks, medicines. He questions everything. It makes me happy that he questions things but also extremely sad. It breaks my heart when he looks at me and asks me if I checked with the pharmacist and made sure his medicine doesn't have milk, egg or peanuts. We must remain viligient. We must have an allergist we trust who provides us with the life saving information we need. Sorry for the long winded response. Food allergy awareness is my soap box!

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