Allergy Shmallergy

Simplifying life for families with food allergies.

The Fire Drill – 5 Key Lessons from an Intensely Scary Night February 22, 2017

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I had been home from the restaurant only ten minutes with my preschooler almost tucked into bed when I got the call.

 

“Miles isn’t feeling well. He’s nauseous and is having terrible asthma. We’re heading home early,“ my husband informed me calmly. My husband and two sons left our regular sushi dinner to attend a tennis lesson, still chewing as they walked out the door.

 

My oldest son has suffered from asthma since he was 10 months old, but this just didn’t sound like the typical onset of asthma for him. Something about Eric’s voice suggested something “other.” “Do you think it could be a food allergy reaction?” I asked.

 

“I don’t know; but we’re getting home as quickly as possible.”

 

Completely abandoning my daughter in her bed, I walked to our emergency medication and unsheathed the freshest EpiPen. I was reviewing our emergency action plan as headlights tore into the driveway.

 

Calm but focused, I greeted my son at the door. He was red and hot and choking out words as I tried to check in with him about his symptoms. He could barely speak. He felt nauseous and clutched his stomach as he made his way into the bathroom, afraid he would throw up. His description of his symptoms came out in – sometimes inaudible – spurts. He was fighting for breath. He felt and looked worse than I had ever seen him.

 

While my hand calmly rubbed his back and my eyes scanned his face assessing the situation, a million thoughts raced through me in a nanosecond. Was it something he ate? Was he possibly reacting to a new allergen? Was this anaphylaxis or pure asthma…or both? The flu and other upper respiratory viruses were spreading so rampantly that nearly a third of my son’s class was out that week. And, he had mentioned having a headache and feeling a little nauseous after school – something that had seemingly subsided by dinner.

 

No matter how I weighed my options, a few small words reverberated in my brain: two systems. Most emergency action plans state that if two or more essential systems (gut/stomach, lungs, skin, heart) are affected in an allergic reaction, epinephrine should be administered immediately. I held up the auto-injectors behind my son’s back, signaling to my husband that we might need to use them. Neither of us have had to use an auto-injector on my son before (knock on everything wooden). We knew it was probably the right call now. We were both looking for the other to validate that decision.

 

As with all things, I wanted the use of the auto-injector to be the absolute right decision. I called my father-in-law, a doctor of more than 40 years, for one last vote on how to proceed. It was a brief conversation. “Get him breathing! Give him albuterol, I’m coming right over.”

 

Having caught sight of me waving the EpiPen in the air to my husband, my son had now begun to sweat with panic – making everything much worse. I sat him on the couch and tried to cool him off for just a moment – considering the facts again. Asthma. Nausea. No throat, mouth, or tongue swelling. No hives. No clear relationship between this reaction and food – but always a real possibility.

 

I looked at my sweet boy once again, suffering for breath, and noticed his pallor wasn’t quite as red any longer; it was now tingeing blue. I grabbed the epinephrine and pulled off the safety cap. At that very moment, my brother-in-law (another doctor) and father-in-law walked through the door. With stethoscope in hand and exuding a calm and caring in doses that make me tear up in appreciation even now, they examined my son and set him up on a nebulizer – a machine that delivers asthma and other respiratory medications as a penetrating, breathable mist.

 

We monitored Miles’ pulse (which was steady) and his breathing (which was labored and difficult). It took a lot of medication and effort, but Miles began processing air more efficiently. I didn’t realize until the second hour of treatment that I had been clutching his auto-injector the entire time.

 

As Miles’ color returned and the dust began to settle, he began to recall details about his day – clues that might have been helpful earlier. Like, the fact that he experienced asthma during recess at school. As he continued to improve, we noted that he was simultaneously experiencing a migraine, which can bring about nausea. Together, we determined that this was likely an acute asthma attack and not a result of his food allergies.

 

All four adults watched Miles for another several hours (well into the night) before anyone was willing to even entertain sleep. And, by then, sleep didn’t come so easily. I awoke in a gasping sweat several times that night and slipped into my son’s room to check on him. At around 5:45 am, I placed my hand on his back and he broke the quiet of the pre-dawn, humorously stating, “Mommy. Your hand is like a furnace!” Smiling and with great relief, I knew the sun would come up that morning and all would be well.

When I relayed these events to my own father, he captured it perfectly. “You had a fire drill last night.” We certainly did. And, as with any good training exercise (intentional or not), we learned some valuable lessons that night.

 

  1. Trust your instincts. I knew we needed to use epinephrine. Had there not been two doctors in the family within arms’ distance from me, I would have absolutely used it. And, so would my husband. Even though it was not anaphylaxis and everything turned out well, I STILL regret not having used the auto-injector sooner. I had my doubts about a food allergy reaction for a number of reasons. The afternoon nausea as well as the absence of hives and swelling gave me pause – which is why I called my father-in-law. But, did being right about his diagnosis make me feel better about my hesitation? No. Severe food allergic reactions can present themselves with a number of symptoms and they can escalate very quickly.

 

  1. Always, ALWAYS carry your epinephrine auto-injector with you. EVERY TIME. And, make sure that your friends, family and/or whoever is caring for your child knows how to use it (procedures are slightly different for Auvi-Q, the Adrenaclick and the EpiPen, so I recommend reviewing often). In our case, we accidentally forgot to transfer the auto-injectors from my purse to my husband’s bag, taking for granted that he’d no longer be around food; out only for an hour to play tennis. Thankfully, we live two minutes from the tennis courts. But had they been further, my husband would ABSOLUTELY have needed those auto-injectors.

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  1. As if you needed an extra reason to carry your auto-injectors: Those who have asthma are more likely to suffer from severe food allergic reactions– particularly if that asthma is not well-controlled. Asthma can complicate food allergies. Asthma occurs when there is narrowing of the airways, making it difficult for an individual to take in the proper amount of air. In my son’s case, his lungs were taking in so little air that initially my father-in-law couldn’t hear any movement with his stethoscope. No wonder he was turning blue. In an emergency situation, epinephrine can be used to treat a severe asthma attack. We were milliseconds from using it.

 

  1. If you use an epinephrine auto-injector you must go the nearest emergency room immediately. This is not because you gave the injection. Rather, those having severe food allergic reactions need additional medication and treatment. Furthermore, patients can suffer something call a bi-phasic reaction – that is, a second, delayed bout of anaphylaxis. It is estimated that up to 20% of patients suffer such a reaction.

 

  1. Once Miles went to sleep, we recapped the night with my father-in-law, who’s served in some fast-paced emergency rooms. I’ve been repeating something he said that night to everyone who will listen:

“We used to tell surgical residents,” he began, “‘If you’re considering performing a tracheotomy, then you need to do a tracheotomy.’”  The same holds true for anaphylaxis. If you think you might need to use an auto-injector, then you DO need to use one. If you’re considering it, then the time is now.

 

I’m beyond grateful that our story ends happily.  I pray you all never have to experience the intensity of a severe reaction (whether that be from food allergies or acute asthma).  But I hope that by sharing our experience and the lessons we learned, your story will end happily, too.

 


 

Essential Resource:

I can’t recommend enough this informative piece on when to give what medication during a severe allergic reaction. The information contained in this article echoed in my head during the above incident.

 

From the Food Allergy Treatment Talk blog:

Putting the Fire by Dr. Brian Schroer

 

Help Fund a Cure for Food Allergies January 10, 2017

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“Why can’t I just be like everyone else?”

If you have a child with food allergies, you’ve likely heard this heartbreaking sentiment from your kid.  We’ve all had to console this same child who just wants to put aside his/her food allergies and anxieties even if only for a single day.

Parents would go to any length for the sake of their kids.  Food allergy parents often do by preparing safe food, educating others, strategizing for school, holidays, play dates, and celebrations.

 

But how many of us have done 3,000 burpees for them?

 

That’s what fellow food allergy parent, Mike Monroe, plans to do on January 25th in order to raise money for ongoing research for a cure for food allergies.  Mike’s goal is to raise $50,000 to support cutting-edge research examining novel applications of cellular therapy for the millions of kids with food allergies being explored at Children’s National Medical Center in Washington, D.C.

 

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marines_burpee by U.S. Embassy Tokyo via Flickr

 

What’s a burpee, you might ask?  It’s a combination of push-up/plank, squat and jump performed in combination.  Try one right now!  Do another.  I think you’ll agree: it’s NOT easy!  Mike plans to complete 3,000 of these in under 12 hours.

What can you do to support Mike?

 

1.  Watch this video about Mike’s incredible motivation – his son, Miles:

 

 

2.  Consider a donation:  Every little bit helps get us all closer to a cure for food allergies.

3K Burpee Challenge for Food Allergies

3.  Share this post!  Please share this with your family and friends, share via Facebook, Twitter, Instagram and other social media channels.  Let’s support Mike and researchers to help our own kids and the millions who face life threatening food allergies every day!

 

 

Donate:

http://childrensnational.donordrive.com/campaign/BurpeeProject

Blog:

http://www.3kburpeechallenge.com/

Facebook Page:

https://www.facebook.com/3KBurpeeChallenge/

YouTube Video:

https://www.youtube.com/watch?v=KSVGTkFtnyk&feature=youtu.be

 

Food Allergies and Family – Disagreements Not Break-Ups April 12, 2016

I hear stories all the time from food allergy parents that their family members aren’t taking their child’s food allergy seriously.  And, this – of course – can have serious implications.  I’m also saddened to hear when this difference in perspective leads to family disagreements – or worse, families cutting one another off completely.

 

Our parents (our children’s grandparents) didn’t grow up with this alarming rate of food allergy.  In fact, many of them didn’t know a single person with a diagnosed food allergy.  Times have changes and current parenting is more active and vigilant than it was 30 years ago.  I’ve explained to many a grandparent that the rise in food allergies is not a trend of parent over-sensitivity or as a result of over-protectiveness, but -in fact- an actual, black and white medical diagnosis.

 

Grandparents and other family members may not understand the amount of work and preparation it takes to safely raise a child with a severe food allergy: the advanced preparation when eating out; repeated education of others; familiarity with labeling laws (such as the FDA’s FALCPA in the United States), alternative names for allergens and a general sense of where it might pop up and cause problems; the worry about our kids and the exclusion we fear they face.  Let’s face it, none of us were prepared for the intense amount of work prior to our family’s first food allergy diagnosis.

 

If there’s one thing I know for sure though, it’s that a parent’s love for their child is fierce.  It knows no bounds.  As food allergic parents, that fierce love we have for our children and our instinct to protect them may come off a little strong.  And, understandably so when we feel like their lives are in danger.  But in the face of difficult decision-making, our anxiety over their well-being may not offer the patient, gentle voice that our family and friends need in order to truly hear our concerns.

 

It doesn’t help that food allergy parents feel disrespected when their own parents don’t fully abide by or outright disregard their guidance about how to feed (and therefore protect) their children.  Food allergy parents can feel betrayed when others are unwilling to make changes to protect their children.

 

So, what can you do when you’re at odds with your family over your child’s food allergies? 

 

First, have a kind but firm talk about the allergies and severity of the possible reactions.  Do this when your child is not present.  Expect a lot of questions, so come prepared with answers from your allergist or pediatrician.  Bottom line: be informative and remain calm.

 

Reminder: don’t put your parents (…siblings, friends…) on the defensive.  Remember the “I” statements you were taught in school.  Now’s the time to employ them.  In essence, phrase your emotions with “I feel…”  rather than pointedly, “You” statements.  “I’m worried that Charlie will have a dangerous allergic reaction because he’s a toddler who doesn’t know the difference between peanuts and raisins,” rather than “You’re not listening to me: put away the peanuts!”

 

Share your learning curve.  Relate to them by reminding yourself (and them) how overwhelmed you first felt when you first received your child’s diagnosis.  They probably feel this way too right now: they’re trying to take it all in and food allergies have likely seemed very far off and remote to them.

 

If necessary, spell out the seriousness.  It can be hard to truly admit – most especially to yourself – the possibility of a severe food allergic reaction and its real consequences.  I have a lump in my throat just writing about it.  Watch the Discovery Channel’s 2013 documentary “Emerging Epidemic: Food Allergies in America” with your parents and siblings (again without the kids present).  The first 10 minutes of this multifaceted documentary deal with an anaphylactic reaction and is a firsthand example of the dangers of food allergies.

 

Remember that old habits die hard.  Most habits are not malicious, but they can be dangerous.  My own father had a nightly habit of snacking on a bowl of nuts, which he continued to do unconsciously when we visited.  When my son could crawl, I reminded him again that this wasn’t safe.  I was frustrated having to restate this every visit, so to drive the point home, I told him, “These nuts are like arsenic for my child.  Leaving them on the table is the equivalent of leaving a loaded gun for my toddler to figure out.”  It clicked immediately.  My dad apologized profusely and has since been phenomenally careful with my son’s allergies.

 

Invite them to a doctor’s appointment.  Allow them to ask as many questions as they have.  Maybe give your allergist or primary care physician a heads up so they know to allow a little extra time for questions and answers.  Hearing the information from a medical professional often underscores what you’ve been saying all along.  You know how your kids listen to their teachers but not you?  Your parents might be the same way.

 

Remind them that as much of an inconvenience as it is for them to adapt to your allergy-friendly lifestyle, assure them that it is SIGNIFICANTLY more so for you and your family.  Make it easier for them to navigate by suggesting some of the tips in The Host’s Guide to AllergiesThe Host’s Guide: Part II; and the Host’s Guide: Part III.

 

Invite them to participate in your lives by organizing activities that DO NOT revolve around food or meals.  I know that’s hard when we talk of family because food and socializing traditionally go hand-in-hand.  But, there’s no need to sacrifice your relationship with even the most obstinate family member – just take away the point of contention:  food.  I know that tensions can flare in the process of trying to win over someone’s mindset, but – by doing other things and removing the obstacle – perhaps you will both come to an understanding about your different perspectives.

 

Families are important.  They are our best cheerleaders.  They remind us of who we are and where we come from.  And, they teach our children all kinds of lessons we can’t impart alone.  By trying to handle differing opinions over a difficult issue like a child’s food allergies in a calm and collected way, we are also modeling great conflict resolution to our kids who pick up on more than we’d like to believe.

 

Food allergy parents need support too.  Parenting is hard.  Parenting a child with life-threatening allergies to something as common as food makes it exponentially more challenging.  Families should be there to help out and pat us on the back for encouragement, to give us a cup of coffee (or glass of wine) after a particularly rough day.  And they should be available to envelope our kids in love, support and safety so they grow up to be confident, self-assured adults with loving families of their own.

 

 

 

 

No-Brainer: Support a Bill to Place Stock Epinephrine on Airlines November 6, 2015

No Nut Traveler

My food allergy colleague and the brains behind No Nut Traveler, Lianne Mandelbaum, has helped introduce a bill to place stock epinephrine on airlines and train airline personnel on the symptoms on anaphylaxis and how to administer autoinjectors.

This is a safety measure that just makes sense.

An in-flight food allergy reaction is frightening and can be deadly.  It’s a situation that our family has experienced first hand.  My father-in-law DISCOVERED he was anaphylactic to shrimp (at age 40) on a transcontinental flight midway over the Atlantic Ocean.  Amazingly, there WAS an epinephrine auto-injector on the flight but the flight attendants wouldn’t deliver the injection, stating they needed a doctor to administer it.  When he flashed his medical credentials (he’s a surgeon), the attendants told him (as he ballooned and his condition became serious) that they required ANOTHER doctor to administer the life-saving medication.  Luckily, flight attendants and passengers assembled a hefty dose of Benadryl that helped ease the reaction until the plane landed several hours later.  Imagine having your first anaphylactic reaction as an adult to a food that you’ve loved and eaten safely for years? It could happen to anyone…

Lianne has helped inform Sen. Mark Kirk (R – IL) and Sen. Jeanne Shaheen (D – NH) who introduced bill S.1972, the Airline Access to Emergency Epinephrine Act of 2015, to Congress.  Current co-sponsors include Senators Ben Cardin (D-MD) and Mark Warner (D-VA).

I encourage you to read more about this bill and the efforts behind it at No Nut Traveler.  And, please reach out to your local representatives and ask them to support S.1972.  What an easy way to make air travel much safer!

 

Put This on Your To Do List Today: Food Allergy Action Plan October 15, 2014

Severe Allergy Action Plan

One of the most helpful food allergy documents I ever received first came, not from our wonderful allergist, but from our  pediatrician.  An Allergy Action Plan is a vital document for you and your family.  It clearly outlines what to do and who to call in a variety of allergic situations.  It spells out how much medication to give and reminds the reader if the patient is asthmatic.

We keep copies of our Allergy Action Plan everywhere.  I have one in our emergency medication basket in the kitchen, one in the car glove compartment, one in our Emergency On-The-Go Kit, one at school, one at religious school, and others at camp.  Now that I’m writing this, I think I should give a copy to my parents and in-laws so that they can familiarize themselves with the right course of action and know where to access this crucial information in case my son is staying with them (even if his On-The-Go Kit also contains one).

To complete your Food Allergy Action Plan today:

1.  First download Allergy Shmallergy’s:  AS – Severe Allergy Action Plan;

2.  Bring to your allergist or pediatrician to fill out.  This is not for a parent/patient to complete;

3.  Make more copies than you think is necessary to display/distribute to anywhere you/your child keeps epinephrine;

4.  Date the document and remember to update it every 12 months.

 

FARE Walks and a Girl with a Dream August 1, 2014

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Many of you are preparing to participate in FARE Walks nationwide this year.  FARE (Food Allergy Research & Education) is the one of the nation’s leading food allergy organization whose mission is to find a cure for food allergies, and to keep individuals with food allergies safe and included.  FARE Food Allergy Walks occur all over the United States and help fund food allergy education, advocacy, awareness and research.

 

One participant is the daughter of my friend.  In an effort to raise $5,000 on behalf of her brother who is allergic to eggs, she asked her mom to post this picture she had drawn.  

Shalyn

 

Can you say A-DORABLE?!    And not just sweet and adorable, but thoughtful and altruistic.  What an awesome kid!  

 

The FARE WALK for FOOD ALLERGY is a family-friendly event, so bring along the kids!  I encourage everyone to get involved in FARE walks – they’re fun, benefit a great cause and expose kids with food allergies to a community of people familiar with the challenges they face.  For more information on what they entail as well as dates/locations, please see FARE’s Walk Page here.  

 

For information on how to support Hadley, please see Allergy Shmallergy’s Facebook page.

 

 

Now What? What To Do After Receiving a Food Allergy Diagnosis April 25, 2014

 

The child of a friend of mine was just diagnosed with a peanut allergy.  Until I began to discuss what this meant with her, I had forgotten just how overwhelming the initial part of this process can be.

 

So, what DO you do upon learning you or your child has a food allergy?  Where to begin!?  Don’t panic, take a deep breath and follow these few steps to get started:

 

1.  Find a recommended allergist; preferably one who specializes in food allergies.  Often times, food allergy diagnoses emerge from a pediatric/internist visit or a trip to the emergency room.  And while these professionals are knowledgeable, it’s important to touch base with an allergist who is on top of ever-changing information and treatment.  Our fabulous pediatrician not only has a child with food allergies but is food allergic herself.  And despite that, even SHE defers to our allergist!

 

2.  Fill your prescriptions and learn how to use your auto-injector.   There’s no wrong answer when it comes to choosing which auto-injector to use (see: Auvi-Q vs. EpiPen: Which Is Best for You?) .  And you can learn how to use them here:  Familiarize or Refamiliarize Yourself With How to Use an EpiPen and Auvi-Q: Watch and Learn.  While you’re at the pharmacy, I would pick up a couple of boxes of Benadryl (for kids, at least two liquid packages) to keep in your house and at school.

  

3.  Review your pantry and devise a labeling system.  It’s important to make your home a safe space to eat.  Begin by reading ingredient lists and separate safe and unsafe foods.  Put that dining room table to good use!  And, don’t forget: manufacturing being what it is, many products are made on equipment that contains your allergen and should be put aside until you speak to your allergist.  An example of a labeling system can be found here.

  

4.  Create an Emergency Action Plan and an Emergency On-the-Go Pack.  An Emergency Action Plan eliminates questions and increases your confidence about what to do when certain symptoms arise.  You can have your pediatrician/internist or your allergist fill one out for you. Make a few copies to keep at home, school, in the car, on the fridge, in your On-the-Go Kit, etc.  The more, the better!

 

An Emergency On-the-Go Pack corrals all your emergency medication, including your auto-injector, plus your Emergency Action Plan and a copy of your insurance card into one pouch.  You’ll always know that you have all of your necessary supplies when you leave the house.  Plus, it will make it super-simple to pass your pack between bags or to another caregiver and know that everything your child needs to stay safe is at hand.

 

A few notes:  Jot down questions as they arise in this early part of the process.  Use your questions as discussion points and get clear answers from your allergist.  Please refer to Allergy Shmallergy’s SCHOOL category to get ideas of how to handle allergy issues at your child’s school, starting with Back to School Food Allergy Checklist.

 

Most of all, remain calm!  Managing with a food allergy certainly requires a different perspective on life.  But, it doesn’t need to be stress inducing.  Staying informed and answering each challenge with simple solutions will allow your family to thrive.