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Anaphylaxis & How You Can Help – Food Allergy Action Month

Ok.  It’s now the last week of Food Allergy Action Month and National Asthma and Allergy Awareness Month and I’ve been pretty bad about keeping up with my commitment to participate.  However, I haven’t been as negligent as it seems.  I’ve just been more focused on acting and less focused on posting about my actions, which of course, is no way to raise awareness.  So, in the homestretch I want to highlight one of the more important aspects of allergy awareness, something that I think everyone should know about, regardless of the amount of contact you have with people with food or other allergies – Anaphylaxis.

It’s a couple of weeks late, but Wednesday, May 14 was Anaphylaxis Awareness Day.  Anaphylaxis is the result of an IgE-mediated allergic reaction and not something that most people with FPIES has to worry about.  However, some children with FPIES also have IgE-mediated allergies to some foods.  For example, E tested positive for an IgE allergy to cow’s milk.  We aren’t really sure if he would have an anaphylactic reaction to milk or if he would have an FPIES reaction, or if he has outgrown the allergy and would be fine.  Either way, we are prepared.  We always have an epipen on hand and have become very familiar with the symptoms of anaphylaxis, just in case.

Even if you don’t know anyone who has tested positive for an IgE-mediated allergy, it’s important to recognize the symptoms of anaphylaxis.  Unfortunately most people are diagnosed with an allergy after their first anaphylactic reaction.  Think about it, allergy testing isn’t routine, so how would you know you allergic, other than having a reaction? Also, allergies can develop at any time.  My aunt ate seafood all of her life and as an adult had a sudden, unexpected anaphylactic reaction to fish.  Now she carries an epipen and avoids all fish and shellfish.  Knowing the symptoms of anaphylaxis will allow you to recognize a reaction, realize that it is serious, and know how to react, whether it’s in yourself, your child, or a stranger. The most important reason to be familiar with these symptoms is because the response has to be fast.  Depending on the severity of the allergy, you may only have seconds to respond with epinephrine before the person stops breathing.  If you can recognize the symptoms and respond by injecting epinephrine quickly, you could save a life.  FARE has put together this great overview of anaphylaxis.  Please review it so you know what you are dealing with and what to do if you see anyone with these symptoms. Based on this information, I hope it’s clear to you that administering epinephrine as quickly as possible is imperative.  Giving an epipen injection is a little scary, but I’ve never heard of anyone who regretted it.   The person having the reaction is usually so focused on their anaphylactic symptoms that they don’t even feel the needle.  And it’s better to err on the side of caution – you can not hurt someone by giving an unnecessary epipen injection.  IT IS ALWAYS BETTER SAFE THAN SORRY when it comes to an allergic reaction.  You can watch a demonstration video online or ask for a demo from someone you know who carries an epipen.  The more familiar you are, the less scary it will be and the more effective you will be.  When E was first diagnosed we held a family meeting so that all of his grandparents, aunts, uncles, and even his eight-year-old cousin would be familiar with the symptoms and what to do.  We passed a demo epipen around the group and everyone practiced.  We haven’t had to use it (Thank God!) but we are ready if we ever do need it.  

Of course, all of this is only relevant if you have access to an epipen.  What about someone who left it at home that day or one of those people who are having their first reaction and didn’t even know they had an allergy?  In general, the only thing you can do is call 911 and hope their response is fast enough.  However, FARE and other food allergy advocates are working hard to increase access to epipens, especially in schools. There are several bills in the works for increasing access to epipens and you can help by contacting your representative and asking them to support the new laws related to epipens.

I know, you are thinking that there is no way you have time for that.  But FARE makes it so easy – there’s really no excuse! The Action on May 6 was to sign up for the FARE Advocacy Action Center.  I had never heard of it, but in keeping with my commitment to Food Allergy Action Month I decided to at least check it out.  It was amazing.  All you have to do is complete an information form and the website figures out who your elected officials are.  You choose the actions that you want to support, the website provides you with an email that you can send or edit as you see fit, it figures out which of your elected officials should receive your letter, you click submit and then you sleep better at night knowing you are doing what you can to help people who are living with food allergies (even those who don’t even know it).  It took me about 5 minutes to send emails to congress to support funding for stocking epinephrine in schools and to support funding for food allergy research.  I also signed up to receive an alert whenever there is a new campaign that needs my help.

Thank you for becoming more aware of the symptoms of anaphylaxis, what to do if you see the symptoms, and maybe even urging congress to help protect those who are at risk for anaphylaxis.  Those of us who love someone at risk for a reaction really appreciate it!

Have you been participating in Food Allergy Action Month? What have you done this May to make the world safer for people with food allergies?

 

 

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How We Spent Food Allergy Awareness Week

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So here it is, the Friday of Food Allergy Awareness Week (FAAW), and I have to admit that I’m feeling pretty guilty about my lack of blog posts this week.  It seems like if you have a food allergy blog, you should probably spend FAAW going all out with posts full of facts and interesting tidbits about food allergies and what it’s like to live with them.  And besides the one short (but important) post from earlier this week, I feel like FU FPIES has been pretty quiet this FAAW.

I was driving home from our playdate today and feeling bad about not spending more time on the blog this week, when it occurred to me that instead of throwing a ton of facts at you all week, we have actually been living with food allergies.  E and I have had a great week.  As I reflected on what we’ve been doing while I wasn’t blogging I realized that this is what FAAW is all about.  It’s about our constant awareness of food allergies and, most importantly, it’s about not letting that awareness interfere with living life.

So, here is a recap of what E and I have been up to this FAAW:

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This year FAAW started on Mother’s Day, which was an amazing day for me!  E and I got to spend some quality morning time reading and cooking together!  I know I’ve mentioned before about how much it fills my heart to see E enjoy something that I baked for him (like chocolate chip cookies), but when he gets to cook with me, it’s even better.  I love an opportunity to make a recipe that he can actually help with and taste-test along the way (stay tuned for the recipe – it’s a good one!).  Then we had a wonderful brunch with my mother, father, great aunt, sisters and their families.  It was great to have everyone together for yummy food and a relaxing day.  E had a great time showing off and playing hard with his cousins. I feel so lucky to be his mom.

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Monday was unseasonably hot so we bought our first baby pool and E went for his first dip of the season (actually his first time ever in a baby pool).  This was definitely the cutest swimsuit at the store and I couldn’t help but notice that it was teal and grey (the FPIES awareness ribbon colors).  He loved splashing around and perfecting his frog impression.  We were also happy to share this picture as part of the FPIES Foundation’s #LoveYourFPIESselfie and #BeTheVoice campaigns for FAAW.

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We had some really wonderful playtime at the playground, the play area at the mall, Grandmom’s house, and of course at home.  I love that my little bookworm refused to put down his book even to climb to the top of the slide.

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We capped off the week with purchase of an E-sized chair for the porch and brand new snazzy sneakers.  Luckily this trip home from the shoe store was far less traumatic than when we bought his first pair of sneakers.

Sure, we did a bunch of un-photo-worthy stuff too – running errands, playing with cars and trucks, reading, coloring, and having the occasional impromptu living room dance party.  We did what we could to recognize FAAW by wearing teal and coloring FPIES awareness ribbons, but the truth is that E has no idea he has food allergies.  What  he does know is how to have a really good time and that he has two parents, a large family, and lots of friends who are always looking out for him and will do what they can to keep him safe and allow him to keep having a really good time 🙂 I spend most of my posts writing about how FPIES has made our lives difficult or scary and I try my best to share information with you whenever I can, the whole blog is really about food allergy awareness.  

Today’s post is a reminder that E is still a toddler who is living life to the fullest every day.  When you see his long list of allergens or read my posts or listen to me talk about the stress that can accompanies living with FPIES, it can be hard to believe that we can still have these wonderfully normal and fun moments in our lives.  For me allergy awareness makes these moments even more special and makes me truly treasure each one.  

When I look back at this week, I see numerous possible blog posts, as most of what we do is related to food allergies or is in some way influenced by E’s FPIES, but he is waking up from his nap and I’ve been looking forward to cuddling on the couch with him while we watch Curious George, so those posts will have to wait for another day.  I hope you are having a great week and enjoying life as much as we are, with or without food allergies.

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Why You Should Care About Food Allergy Awareness Week

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What do you want you want most for your child?

I have no data to support this and I am totally going out on a limb, but I think that one of the most frequent answers to that question is often: “I want my child to be happy.”

Unless you are an allergy parent, then your answer is most likely: “I want my child to be safe.”

It isn’t that non-allergy parents don’t want safety for their kids.  Everyone wants their children to be safe and we all take multiple steps every day to keep them that way.  We buy the safest carseats, we teach our children to stay out of the street, to hold our hands in crowded places, to wear bicycle helmets.  For most parents safety is a given.  Of course you want your child to be safe, that goes without saying.

But for allergy parents it’s different. We think about safety all the time.  We say the word “safe” multiple times a day.  Food isn’t just “yummy” or “yucky,” it’s “safe” or “not safe.”  We are always on alert because to us it feels like our children are rarely truly safe.  They are always at risk for having a severe, perhaps life-threatening allergic reaction.  I’m not just talking about FPIES reactions, which can be extremely scary and can land your child in the hospital.  Instead, let’s go worst-case scenario and think about a parent whose child has an IgE allergy.  The kind where peanut dust can cause an anaphylactic reaction that includes the child’s skin breaking out in huge, red, itchy hives, and their throat closing, preventing them from breathing.  This child may die if they aren’t administered epinephrine within seconds.  All this from peanut DUST! These parents don’t ever take their child’s safety for granted.  And the worst part is, it’s not something they can control.  These parents rely on you – the rest of the world – to help keep their children safe.

Food allergies affect 15 million Americans, according to Food Allergy Research and Education (FARE), this is the same number of people who watch Dancing with the Stars, or who work the night shift, or who practice yoga.  That is a lot of people.  One in 13 children has a food allergy.  You probably know 13 children, imagine one with a severe allergy.  Food allergies are real and they are serious – every three minutes someone goes to the ER with a food allergy reaction.  That means that in the time it takes you to read this blog post, someone in the US has had an allergic reaction so severe that they had to go to the hospital.  Because of A FOOD.

And it’s not just peanuts.  Peanuts get a bad reputation because they tend to cause really severe reactions and children are less likely to outgrow peanut allergies.  But a person can be severely allergic to any food. The most common food allergies are to milk, eggs, peanuts, tree nuts, soy, fish, shellfish, and wheat.  But a person can have a severe reaction to a fruit or a vegetable or anything.  Any food can be a poison to a person with food allergies.  And food is everywhere!

This food allergy awareness week, I ask that you become more aware of food.  Look around you.  When you are at home, how much of your time is spent related to food – planning meals, cooking, eating, snacking, cleaning up? When you are out and about notice where the food is – a person drinking a latte passing you on the street, a toddler eating a snack in the stroller while mom goes for a walk, a family picnicking at the playground, a rushed businessman who is shoving the last of his lunch into his mouth and brushing the crumbs off of his hands as he runs into a meeting.

Take some time this week to become aware of where food is.  Food allergy parents are always aware.  The moment they enter a new place they can tell you what every person around them is eating and have completed several calculations to determine the likelihood that their child will come in contact with it, the danger of that contact, and what they would need to do to prevent the contact.  While you are checking playground equipment to make sure some crazy person didn’t hide razor blades on the monkey bars, they are checking the ground for nut shells, or chocolate wrappers, or kids wandering aimlessly around snacking from a tub of Cheerios.  These parents view the world in a way that is so different from you that you can’t even imagine.  I know these things never would have occurred to me before I was thrown into this world.

Once you become more aware, try to do just one thing to help out those with allergies.  Wash your hands after you eat.  Think twice before you pacify your child with a snack in a public place.  Throw away your food trash.  It sounds dramatic, but these small steps really could save someone’s life.  Even though you may not think you know anyone with food allergies, your actions can have a huge impact on someone with allergies.  At a minimum they will lessen the stress of the parents who work so hard to keep their children safe…and happy.

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The FPIES Awareness Ribbon

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Today’s action for Food Allergy Action Month is to change your social media profile picture to FARE’s Teal Ribbon.

I decided to make my action more FPIES-specific and instead changed my Facebook profile picture to the FPIES Awareness Ribbon.  The FPIES ribbon is a twist on the generic Food Allergy Awareness Ribbon, which is solid teal.  The difference, of course, is that the FPIES ribbon has a gray line through it.  This is to symbolize that FPIES is a type of allergy about which there are still many unknowns, i.e., there is a lot of “gray area.”   I really can’t think of a better way to symbolize this frustrating illness!

Please feel free to share the FPIES Awareness ribbon or the Food Allergy Awareness ribbon as your social media profile picture or however you wish.  The more people become aware of food allergies, the safer our children will be.

 

FA Action Month

A nasty cold moved into our house this week and I was not prepared (go figure), so I got a little behind on my Food Allergy Action Month posts.  I know, how sad is that I couldn’t even stick to this for more than one day?  Don’t even talk to me about new year’s resolutions.  Anyway, here’s what you missed:

 May 2
Speak Up with Your Social Reach! Join our Food Allergy Awareness Week Thunderclap
 May 3
Order an Official Food Allergy Awareness T-shirt from MASSCanvas

The Thunderclap is a really cool idea.  It’s an automatic service that will send a message via social media on May 12 at 10am.  If you sign up, it will send the message on your behalf, so that the message goes out at exactly the same time for everyone.  It only works if 500 people sign up.  Right now they aren’t even halfway to the goal, but already have the potential to reach almost 80,000 people.  I hate the idea of giving permission to an app to post on my Facebook page on my behalf, but this is too important.  I strongly encourage you to check it out too:  https://www.thunderclap.it/en/projects/11302-food-allergy-awareness-week.  The message is:

“It’s not a fad.  It’s a potentially life-threatening disease.  Take action to find a cure.  #FoodAllergy Awareness Week” 

Saturday’s action was to buy a food allergy awareness shirt.  There are two designs this year, each designed by someone touched by food allergies.  The first one illustrates the 15 million people with food allergies, thus 15 million reasons to care about food allergies.  The second illustrates the top 8 food allergens and reminds us that there are 15 million reasons to work for a cure and “get food allergies off our plate.”  20% of the proceeds from the shirts go to FARE to support food allergy research, advocacy, and awareness.

 Hap“It’s not a fad. It’s a potentially life-threatening disease. Take action to find a cure. #Foodareness 

Happy Food Allergy Action Month!
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It’s Food Allergy Action Month!

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Food Allergy Research & Education (FARE) has declared the entire month of May as Food Allergy Action Month, which is an extension of Food Allergy Awareness Week, which begins on May 11. The goal is “to go beyond raising awareness in order to inspire action so that we can improve understanding of the disease, advance the search for a cure, create safer environments and help people live well with food allergies.” In celebration of this event FARE has issued a challenge in the form of a calendar. Each day contains an action that you can take to support food allergy awareness, with the goal to do something every day.

I don’t know if I’ll be able to stick with everyday but I will do my best to raise awareness for food allergies in general and relate it to FPIES when I can.  I hope to do this in a series of short and sweet posts, and encourage everyone to check in every day to learn something more about food allergies and FPIES.  I’ll also continue to tell the story of E’s FPIES Journey and share yummy recipes as well as our FPIES victories.

Today’s action is to share FARE’s Food Allergy Awareness Infographic:

And here is an awareness card created by the FPIES Foundation:

I encourage you to share this information with your friends and family and get involved yourself. THANK YOU!