Allergy Shmallergy

Simplifying life for families with food allergies.

6 Tips for Traveling with Food Allergies March 7, 2017

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Spring break is on the horizon!  Can you smell the fresh air already?  Are you mentally packing your bags? (I am!)

 

Here are a few tips when traveling with food allergies:

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  1.  Call your airline and inquire about their food allergy policy in advance.  Ask specifically about early boarding and in-flight announcements.
  2. Most airlines will allow passengers to board the plane early in order to wipe down surfaces (this includes seat backs, seat belts, tray tables and knobs, armrests). Be sure to bring enough baby wipes or antibacterial wipes (such as Wet Ones) to cover all the legs of your travel.  Again, ask about pre-boarding at the gate.
  3. Carry your epinephrine auto-injectors and antihistamines ON BOARD.  Do not pack these away in your luggage.  [*ALLERGY SHMALLERGY TIP*: Zyrtec makes dissolvable tablets which eliminate the worry over bringing liquids through security as well as anything spilling in your bags.]
  4. If you’re traveling to a warm weather destination, you’ll need to remember to keep your epinephrine auto-injectors at room temperature – even while enjoying the beach or pool.  Pack a cool pack (like this one) and an insulated bag (like this cute lunch bag).  Store the cool packs in your hotel’s mini-fridge (who needs a $15 bag of M&Ms anyway!?) or plan on ordering a to-go cup of ice to keep the medicine cool poolside.
  5. A hotel or resort’s food services manager can usually help you navigate menus.  On our last vacation, the food services manager had food allergies himself and was invaluable in hunting down ingredients and safe alternatives for our family.  Befriend this fantastic person!
  6. If you’re planning on visiting an amusement park, taking a hike or being similarly active, consider packing a backpack into your luggage (or use one as your carry-on!).  You’ll need to bring your epinephrine auto-injectors wherever you go – especially on vacation when you’re away from home cooking, familiar restaurants and local knowledge of hospitals and doctors.  Backpacks can make carrying it easier depending on the activity – simply slip the insulated bag into your backpack and go!

 

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Two more notes:

  • Airline travelers should bring their own snacks/meals on board flights to ensure their safety.
  • Refrain from using airplane blankets and pillows as allergen residue may reside there.
  • Bring a baby or antibacterial wipe to the bathroom to wipe down door  and knob handles.

 

 

 

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

 

Managing Food Allergies In the Snow November 30, 2016

winter sledding in the snow, winter break

photo taken by Kevin Jarrett

Winter is an important time to get outside. It leaves you feeling refreshed and invigorated. Winter weather invites us to engage in all kinds of fun and unique activities. Ice skating and hot chocolate go hand in hand. Snow days beg for sledding down sleek hills. Cross-country skiing, snow shoeing, and even hiking are fabulous ways to appreciate the quiet beauty of the season.

 

And, of course, there’s my personal passion: skiing.

 

No matter what your winter passion is, please read Let It Snow! (below) for some important tips on how to carry your epinephrine auto-injector and how to manage your food allergies in the cold and on the slopes!

 

See our story and read how to enjoy – not endure – the season in the Winter 2016 edition of Allergy & Asthma Today:

 

Allergy & Asthma Today – Winter 2016

Or read it here:

Let It Snow!  Managing Food Allergies In the Snow

Our family loves wintertime and winter sports – skiing, sledding, ice skating, you name it. My son has multiple food allergies, so we always carry epinephrine auto-injectors with us, even in the cold, and we make sure they are safe and secure.

 

Epinephrine must be kept at room temperature in order for the medication to remain effective. When you plan to go outside in the cold, carry your auto-injectors in the inside pocket of your winter coat.

 

If you have no interior pockets, or they’re not big enough, get creative. We made a holder for our epinephrine auto-injectors using a pencil case and a lanyard – anything to keep the epinephrine close by and at the correct temperature.

 

Gone Skiing

 

When my son was old enough, my husband – an avid skier – was excited to get him on the slopes. But the idea of trying to manage his food allergies on a ski vacation seemed challenging.

 

Who could I track down to get ingredient information for food in the ski lodge cafeteria? How was I going to store and easily access snacks and lunches that were safe for my son? Could I rely on the ski school to look out for him and his food allergies?

 

During recent ski trips, we found food service employees were knowledgeable about food allergies. Several of my son’s ski instructors needed no introduction to epinephrine auto-injectors – some had food allergies themselves, which made them even cooler in my son’s eyes.

 

The staff walked him through cafeteria lines, read ingredient lists, and helped him find safe alternatives for group snacks – all at 10,000 feet.

 

If you’re planning a trip to a ski resort, here are some food allergy tips:

 

  1. Call ahead. Ski lodge operations may seem relaxed, but they do take food allergies seriously. We spoke with a food services manager at one ski lodge who outlined their offerings, looked up food suppliers and tracked down ingredients for us – all before we stepped foot in the snow. Ask about the lunch routine during ski school and what kinds of food students receive. Are they given snacks? Do they have free choice in the cafeteria?

 

  1. Show up for ski school classes early with your epinephrine auto-injectors. Talk with your child’s ski instructors and if necessary, teach them how to use an epinephrine auto-injector – and when to use it. Remind them they will need to store it in an inside pocket of their ski jacket to keep it close to room temperature.

 

  1. Consider meeting up with your child’s ski school class for lunch to help your child navigate the cafeteria line. But don’t expect to eat with them! Skiing creates fast friendships and your child will have more fun hanging out with their ski buddies.

 

  1. Pack some safe snacks and store them someplace readily accessible. Kids are often hungry when they get off the slopes and ski lodge cafeterias typically close right when the lifts do.

 

Now … Bring on the snow!

 

 

Breathing Easy On the Slopes

 

Many people with food allergies also have asthma. When outside in wintertime, cold, dry air can be an asthma trigger. Wrapping a scarf around your nose and mouth warms the air you breathe and helps keep the rest of you warm as well. Tuck a quick-relief bronchodilator inhaler into an inside pocket of your jacket just in case you start to cough or wheeze.

Food Allergies

Enjoying a fantastic winter vacation. Skiing in Park City, Utah.

 

Stock the Shelves for Families with Food Allergies November 22, 2016

With the holidays upon us, gratefulness should be at the forefront of our minds.  It’s certainly on mine.  And, while I am so thankful for so many things, I can’t help but think of those who may be enduring hardship.

 

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unaltered photo from Salvation Army USA West via Flickr at http://bit.ly/2gcaVDo

 

In 2013 (and each year since), my sons and I have volunteered at a food assistance center in our area.  As I detail in my original post, Thankful (Nov. 2013), my eldest son – who is allergic to peanuts, tree nuts, sesame seeds and dairy – took me aside as we were sorting donations.  “I couldn’t make a meal out of anything in here,” he whispered.  He was concerned that if a kid like him had to rely on a food pantry for his or her meals, they’d leave hungry.  In reality, his worry is not unfounded.  Food insecure families with food allergies are forced to make difficult decisions every day.

 

So, let’s try to make things a little easier for those with food allergies who are in need this holiday season.  If you can, I encourage you all to donate food allergy-friendly food to your local food pantry or regional food bank.  When you do, please attach the forms below to request that your donation be set aside for another food allergy family or individual.

 

AllergyStrong/Allergy Shmallergy Food Donation Forms

 

And, if you or someone you know works at a food pantry, please ask them to contact us at erin@allergystrong.com.  We’d love to work with local and regional pantries to help them support food allergy families year-round.

 

Some Suggested Items to Donate

  • Sunbutter, Soynut Butter, Wowbutter, or other alternative to peanut butter
  • Gluten-free Pasta
  • Dairy-free, long shelf-life Soy, Rice or Coconut Milk
  • Rice or Corn-based Cereal
  • Gluten-free cereal and oatmeal
  • Rice-based meals
  • Ener-G Egg Replacer
  • Gluten-free, dairy-free or egg-free baking mixes (muffins, etc)

 

 

Vote for Your Favorites! Best of 2016 May 5, 2016

All this talk of primaries and politics has gotten me thinking:  let’s vote!  But let’s vote for something a lot more fun and delicious:  allergy-friendly food!

 

Please take this incredibly quick survey and let me know what foods your family loves and I’ll share our collective favorites.  Maybe you’ll suggest a new product to another food allergy family – or maybe you’ll find a new favorite yourself!

 

 

https://www.surveymonkey.com/r/VDZMVHS

Thanks, everyone!

 

‘Tis the Season: 504 Plans April 15, 2016

 

Fall and the start of school seem far away – I mean, who can think about going back to school when summer is just around the corner?!  That said, many of you are now sitting in front of a pile of forms thinking about 504 Plans for your children for next fall.

 

504 refer to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act.  These plans are set in place to provide accommodations to school age children with disabilities (food allergies are listed among the qualifiers) to ensure that they are afforded equal access to learning and academic success as their peers.

 

These plans are created in collaboration with your child’s school and spell out food allergy management.  In addition to a Food Allergy Action Plan, 504 Plans can cover a broad range of topics such as snacks and meals, storage of emergency medication, addresses classroom issues related to food allergies such as science projects and other manipulatives, as well as hand washing policies.

 

Many people, including school administrators, get 504 Plans confused with IEPs.  An IEP is an Individual Education Plan which allows students with disabilities (often learning or cognitive disabilities) to receive specialized instruction and/or related services.  IEP qualification is determined both at meetings and in conjunction with standardized assessments, as well as other data collection.  504 Plans are determined by looking at medical records. Both are federally funded programs: 504 Plans guarantee access to education while IEPs provide supplemental academic services.

 

I recently came across an incredibly thorough and helpful article written by Vivian Stock-Hendel on fellow blogger, Sharon Wong’s blog “Nut Free Wok.”  Entitled, Food Allergy 101: 1, 2, 3…504 , you will learn everything you need to know about completing a 504 Plan and what to do if you need both a 504 and IEP.

 

Keep in mind, both plans can be used at schools which receive federal funding.  If your child attends private school, ask someone in administration if the school makes food allergy accommodations through 504 Plans or by another means.

 

Best of luck!

 

Additional Resources:

FARE: Advocacy – Section 504 and Written Management Plans

Food Allergy Action Plan Template

 

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.