Flights, Peanuts, Allergic Kids — and, Yes — Anxiety

Preparations are underway for a wonderful family vacation this summer. But I’ve had an unwelcome visitor in the process this year. Flight anxiety.

This isn’t your garden variety flight anxiety — worrying about the plane crashing to earth (I definitely have that one though). This is a fear of bringing my peanut-allergic son onto an aircraft and seeing him experience a life-threatening reaction 35,000 feet up in the air. Over the Pacific Ocean. Hours away from an emergency room.

Have you had these fears, too?

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We’ve flown many times over the years with this life-threatening peanut allergy. My son N was diagnosed over 10 years ago when he was 2. We have followed the typical protocols, addressing his needs with the airlines, asking for accommodations and bringing our life-saving medications — and foods — on board. The flights we’ve taken (to Hawaii, the Caribbean and Europe) have been uneventful — thankfully! And I have to admit — we really haven’t worried about it. Much…

So what changed?

Twitter. That (relative) state of calm has been shattered since I signed up for a Twitter account in the past year. I’ve clicked on links to read heart-wrenching accounts of anaphylaxis. Crying as I read them, I’ve mentally noted the varying descriptions of how anaphylaxis presents itself.

We’ve never had to give our son epinephrine. He did receive it at diabetes camp once, years ago. Aside from that traumatic incident, the Epis have been dutifully carried around in my son’s bag without use for over ten years.

Since we have never administered Epinephrine ourselves, it’s easy to feel somewhat complacent. Will I recognize the signs of an allergic reaction should an emergency occur? We’ve all heard the pleas from medical professionals and parents who have been through this experience: Don’t hesitate! Give the Epi-pen or Auvi-Q shot!

Facing fears…

So in the spirit of facing my fears and avoiding complacency, I have returned to news articles, videos and posts from the past year or two about food allergic passengers’ negative experiences with airline travel. I was determined to be fully informed!

In doing so, I came across recommendations detailing steps to take to make airline travel as safe as possible. It was reassuring to review them. Especially since we had been taking most of these steps over the years.

But I also encountered stories that made heart race. Descriptions of conflicts between food allergic passengers advocating for their needs and the reluctant airline crew who would not accommodate them — infuriating! And the couple of accounts of in-flight anaphylactic reactions to nuts despite precautions having been taken? Absolutely terrifying.

The culmination of my anxiety came when I watched the five minute film: More Than an Inconvenience by Amy Wicker. She is a food allergy advocate and author of the site Allergy Safe Travels. In this film, seven individuals / families tell their stories of adversity flying with a life-threatening nut allergy and experiencing a reaction or deciding not to fly at all because of it. My heart aches for all of these families — and ourselves included. We simply want our children to be safe! Okay, at this point my anxiety was absolutely off the charts.

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A calming influence

I was beginning to question the wisdom of our decision to fly when I came across a post by Daniella Knell, advocate, educator and author of the blog: Smart Allergy-Friendly Education. She’s also been a flight attendant for over 20 years. In addition to giving suggestions, she said:

“Stop reading the media hype about the dangers of flying with food allergies. Read the facts. Here are two good reads…” (and she cited the following two sources)

The data is reassuring — and also somewhat alarming!

Essentially, in the study listed above, the authors analyzed in-flight emergency data from a 2 year, 10 month period. There were about 16 medical emergencies per 1 million passengers. “Allergic reaction” (food allergy wasn’t specified) was responsible for only 2.2% of the emergencies (265 people). That’s pretty low! The plane was diverted for 12 of the 265 emergencies. Forty passengers with allergic reactions were transported to the hospital for evaluation and eight were admitted. And there were no deaths from allergic reactions. Not one. Thank God.

But then in an international study about flying with nut allergies, led by the University of Michigan, published in the Journal of Allergy and Clinical Immunology – In Practice and listed on the C.S. Mott Children’s Hospital website, they reported that only 50.1% of the passengers who experienced an allergic reaction informed the flight crew about it. What? So the emergency data above likely does not accurately reflect the amount of allergic reactions that are occurring?

Just over 10% of the study participants with life-threatening nut allergies reported having an in-flight allergic reaction. That’s a lot!

But the lead author of the study, Matthew Greenhawt, M.D., M.B.A., M.Sc., pointed out something else: Taking preventative measures was associated with a significantly lower risk of having an allergic reaction. These include:

“requesting any accommodation, requesting a peanut/tree nut-free meal, wiping their tray with a commercial wipe, avoiding use of airline pillows and blankets, requesting a peanut / tree nut-free buffer zone, requesting that other passengers not consume peanut / tree-nut containing products and not consuming airline provided food.”

Not every participant took precautions. If fact, not everyone carried epinephrine. And of those who experienced an allergic reaction, only 13% used their epinephrine.

There are steps you can follow to reduce your risks

The preventative measures listed above are encompassed in these great guidelines, provided by No Nut Traveler.

No Nut Traveler - Flight DayNo Nut Traveler - Before you go

Okay, so our family trip is definitely still on. Reviewing the recommendations above helps me gain a much needed perspective on this situation. It’s so easy to feel your anxiety level skyrocketing when reviewing all of this information!

The antidote to anxiety: Information and action. 

  • Follow the recommendations above from No Nut Traveler — including talking to your doctor. Does your allergist think airline travel is appropriate for your child?
  • Are you prepared to give epinephrine, should it be needed? F.A.R.E. has a great anaphylaxis plan that could be helpful.
  • You’ve taken action to minimize risks by following the recommendations above. Time to get through those flights and enjoy that vacation!

Anxiety is a part of the package if you’re flying with a child who has a life-threatening food allergy. Be aware of it — but don’t let it rule your life. My anxiety is probably going to be in the “elevated” state after all of this research. Alert. Vigilant.

If it goes off the charts, my child will take notice and follow suit. Yours may, too! Our children are watching how we navigate this difficult situation and determining whether or not it’s safe to go out into the world. What do you want want your child to learn?

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Finally, there’s one way to minimize — if not end — this anxiety roller coaster for all families affected by nut allergies. ADVOCATE! 

  • Sign Lianne Mandelbaum’s petition, asking for a bill of rights to be instituted for passengers with life-threatening nut allergies. The deadline is coming up at the end of June and more signatures are needed.
  • Watch and share More Than an Inconvenience, as mentioned earlier. If you or your loved one has been impacted negatively by airline policies, please share it with your local media.
  • Join Food Allergy Resource & Education or another advocacy organization to keep abreast of the issues!

Disclaimer: Please do not take information from this blog as medical advice. I am not a medical professional. This blog is a collection of my thoughts, inspirations and resources related to travel and health challenges. I share them from my perspective as a mom and fellow traveler. Contact your doctor for medical information specific to your situation.

 

Protecting Your *Other* Precious Cargo on a Summer Road Trip: Insulin and Diabetes Supplies

IMG_9330 - Version 2Summer is around the corner and road trip season is almost upon us! The itinerary and reservations are set. Our car has visited the dealer for a maintenance check. Kids are safely strapped into their seats and we’re ready to go. But what about the safekeeping of insulin and our other medical supplies? The astronomical costs of these supplies and the extent to which we rely on them warrants some thoughtful consideration. Last summer this topic was front and center for us as I planned our four week road trip to Colorado. With diabetes, celiac and food allergies, there are lots of supplies to bring. These supplies proliferate when you’re planning an extended road trip. Safekeeping this precious cargo as you move in and out of various accommodations gets pretty complicated! Add summertime to the mix and you have a real concern — keeping your supplies safe from the perils of summer heat. Where there are worries, there are solutions. I’d like to share some of my own. I’m hoping that you’ll share your solutions, too. We’ll all be the smarter for it! Options for keeping opened vials in a safe temperature range:

Frio Insulin Cooling Wallet

Frio Insulin Cooling Wallet

  • Frio insulin cooling wallets are great for protecting your opened insulin from extreme heat. They’re affordable, portable and reusable. We keep Frio packs with us for our day outings. They have been quite useful!
  • Climapaks: This device maintains your insulin between 44 and 77 or 86 degrees (depending on the insulin) whether you’re in hot weather or cold through battery power. The charge lasts 3 – 5 days. The expense is quite significant at $299. You can rent it for $9 a day, minimum 5 days and shipping is included. We haven’t used it but you can check out two great reviews from Christina Ghosn of the blog Stick with it Sugar and Allison N. of Diabetes Mine – the all things diabetes blog.
  • Medicool has several products that keep insulin in cases of various kinds with a cooler pack. They include: Dia-pak Classic, Dia-pak Daymate and Insulin Protector.

What if you are bringing extra insulin and don’t want to start the 28 day clock ticking toward expiration? If this is the case, you must keep the insulin cold — or refrigerated. For most types of insulin, that means keeping the vials / pens at 36 – 46 degrees. It is widely suggested that you bring at least double the supplies you would normally need. If there was leftover insulin after your trip, it would be nice to place it back in the fridge! When carting around extra vials or pens of insulin, we have successfully used the following option: good old-fashioned coolers.

A "cool" cooler and a "cold" cooler

A “cool” cooler and a “cold” cooler

We use two large coolers during our road trips and bring several smaller ones along for short outings and snacking in the car. The “cold cooler” holds the insulin and special foods for N (N has celiac disease and a life-threatening food allergy which limits his dining options on the road). Note: Never place insulin directly on ice or an ice block! The “cool cooler” has only a couple ice blocks in there. We store the majority of our medical supplies in it that do NOT require refrigeration. Most diabetes supplies and extra Epi-pens and even pharmaceuticals need to be protected from excessive heat. According to the Weather Channel, the temperature inside a car can reach 138 degrees after sitting in the sun for 1.5 hours in 90 degree heat. Wow — that’s hot!

The Cool Cooler has CGM sensors, Omnipods, BG strips, pharmaceuticals, gummy packs for low BGs and more.

The “cool” cooler has CGM sensors, Omnipods, BG strips, pharmaceuticals, gummy packs for low BGs and additional supplies. Plastic bags are used to protect them from the ice blocks’ moisture.

The Cold Cooler holds the back-up supply of insulin, special foods and more.

The “cold” cooler holds the back-up supply of insulin, special foods, some healthy snacks and more.

Other options for keeping insulin refrigerated:

  • There are plug-in refrigerators or coolers made for automobiles. We owned a Koolatron and used it with a previous minivan that had a power source that was live even when the car was turned off — handy for leaving your car behind for an hour or two. It had an adapter so we could use it in the hotel room as well. The downside was that it sometimes froze items in a lower corner and it was fairly loud. We stopped using it some years ago — mostly because our needs outgrew its small size.
  • Medicool also has a product called Medicooler which is a small, portable micro fridge. It keeps insulin cooled by plugging it into an auto outlet in your car or plugging it into a standard outlet in your hotel room. The majority of the reviews on Amazon give it only 1 star. I’ve never tried it but wouldn’t personally recommend it after reading these reviews.

Staying in hotels along the way Many hotels these days have mini-fridges available in the hotel rooms. If your hotel doesn’t offer this amenity, they may have small fridges available for use if you cite your medical need. Sometimes they’ll charge a fee. This is best arranged ahead of time. So do you put your insulin right into the fridge? On our road trip last summer, I didn’t. Those mini-refrigerators freeze items way too often for my comfort! For a multiple night stay in a hotel room, I will place some food items inside on the first night. We fill our (now empty) large cooler with ice from the ice machine and set the insulin in a small soft-sided cooler with the top open inside. (I did tell you that I bring lots of coolers!) If nothing freezes after the first night, then the insulin goes into the fridge for the remainder of our stay. What about all of those ice blocks? We bring them to the front desk in a large plastic bag, put our name and room number on it, cite our medical needs and ask them to freeze the blocks overnight. The hotel staff have always been very accommodating and we are grateful for this! If you’d like to know more about safekeeping insulin, Wil Dubois of Diabetes Mine wrote an interesting article entitled Tracking Insulin’s Health in the Summer Heat describing the manufacturers’ storage temperature recommendations, what experts had to say and more. Check it out. If you’re hitting the road this summer, best of luck to you and your family on your journey! I’d love to hear about how you have provided safekeeping for your medical supplies. Drop me a line!

       

Being a Houseguest with Food Allergy and Celiac; What Do You Say to Your Host?

Invitations to stay with friends and family aren’t extended to us very often. Or dinner invitations for that matter. We’re likable people and our three boys are well behaved. We’re great eaters and like a wide variety of foods. We’re not short on friends and family members either. The difficulty comes from the fact that we are high maintenance guests to cook for. N, our middle son, has a life-threatening peanut allergy and celiac disease in addition to type 1 diabetes. I have a long list of food intolerances that includes dairy, eggs, 4 veggies, 4 fruits, and quinoa. (Intense stomach cramps and nausea keep me adherent to a diet without these offenders.) As if that wasn’t enough, my oldest son, B, was a vegetarian for about four years. Thankfully, B gave up his vegetarianism two years ago after a stay in Denmark — a country that loves their meat. I am supportive of vegetarianism; We just didn’t need another dietary restriction in our household. Food intolerances are a nuisance, but having a life-threatening food allergy or celiac disease is serious business.

IMG_9208So, when we get an invitation to someone’s house for a meal or to stay with them, they usually aren’t familiar with the extent of our special diets. After learning about these dietary restrictions, hosts tend to fall into two camps: welcoming hosts and the fearful — OMG, Can I retract my invitation? — hosts. Welcoming hosts, extend that invitation without awareness of the work involved. Some may not understand the severity of the issue. Celiac? No problem, we’ll leave out the bread and pasta. Peanut allergy? The peanuts and peanut butter will remain in the cupboard during your visit. If you or your child has a food allergy and/or celiac, you know the story can’t end there. Consideration must include the hidden sources of gluten in jarred sauces and broths, the dried fruit processed with peanuts that was added to the salad, the porous cookware, utensils and cutting boards and practices in which cross-contamination could occur.

Most of us venture out to restaurants and become quite good at advocating for our needs. We research dining establishments ahead of time and ask questions of waitstaff, managers or chefs to ensure that our meals will be safely prepared. Questioning waitstaff is very different from questioning Aunt Sally, though. Etiquette gets in the way when you’re dealing with friends and family. I recall attending a party where the host informed us that she baked gluten free muffins and invited my son to have some. I happened to know that she wasn’t in the practice of baking for someone with food restrictions and therefore was not likely to be knowledgeable. To be “nice” and accept such a treat could literally threaten your child’s life, in the case of a food allergy! So with great anguish, I asked a series of impolite questions and learned that she didn’t use a gluten free baking powder. We thanked her kindly for her effort but had to decline. This was a difficult situation!

How will our hosts respond to the real info in managing food allergies or celiac?

How will your hosts respond to the information regarding managing food allergies or celiac?

So let’s start with the welcoming host. Over time, I’ve realized that a process has evolved when considering an invitation to be a houseguest or a dinner guest. Here are my considerations:

  • Is your host knowledgeable about food allergies or celiac disease? This is not by any means a requirement but it sure makes this arrangement much easier!
  • Does your host take food allergies or celiac disease seriously? There are people who think that food allergies are just exaggerated food intolerances or simply nonsense, attributable to an anxious parent. If your host falls into this category, then staying with them is not wise. The health and wellbeing of the food allergic family member is at stake.
  • Is your host willing to share the kitchen and partner with you in planning meals?

The process of educating someone about food allergy and celiac can be tricky, to say the least. I recall a time when we spent a couple of days with close family friends (my mom’s best friend) during a two week vacation. In preparation for the visit, the host and I had been emailing and I sent a list of our food restrictions to “help” with menu planning. Instead of receiving an email in response, I received a phone call from my mom. “Karen, it’s too much…” The hosts were understandably overwhelmed. We stayed with them but came up with a workable plan.

Through trial and error, I’ve come to some conclusions. Faced with specifics on the preparation of a safe meal, your host will likely join the camp of the fearful — OMG, Can I retract my invitation? — host. Here are some considerations to aid communication and develop a doable plan:

  • IMG_9215 - Version 2The process of communicating dietary restrictions is complicated. A phone call is much more effective than an email. The real-time feedback will help you formulate a plan. The responses from your host will help you decide whether it will work to stay there or whether you’ll need to make other arrangements.
  • The burden of the special diet is yours when you are staying in someone’s home. You’re the expert. You’ve learned all the rules. Hang onto those PDFs explaining how to read labels, find hidden sources of gluten, keep ingredients free of cross-contamination, etc. (unless the host specifically asks for them). Offer to do your own grocery shopping and bring your own ingredients, if possible.
  • Develop a game plan that will work for everyone. Partner up with the host to prepare meals — and keep them simple. Plan to prepare your own family’s breakfasts and lunches and work together on evening dinners. If the host would like to cook dinners, offer to prepare the food for the family member affected by food allergy or celiac.

With these tips in mind, I’m back to planning a stay with our dear friends in Canada. The dialog is underway regarding food preparation. I haven’t discussed the nitty gritty about cross-contamination and my game plan for managing this yet. It’s a rare invitation and I’d like to get this right. Time to pick up that phone…

I’m curious — How do you manage invitations to stay with someone with your restricted diet?  I’d love to hear about it.

Taking Diagnoses on the Road

Type 1 diabetes made itself known to us while we were on a three week road trip back in 2006. N, our five year old son, started having some accidents at night just prior to our trip. My husband and I looked at each other and wondered aloud if it could be diabetes but put it right out of our minds. We were probably just worrying too much. I had worked with kidney dialysis patients (many of whom had type 1) as a social worker years earlier and my husband is a family practice doctor. We both knew the signs.

The next day, after saying goodbye to my husband, my mom, the three kids and I set off on our road trip. Two days later, our dismissed worry became a reality. On July 1st, 2006, following an outpatient blood draw at a rural hospital in Iowa, we received the diagnosis. N had type 1 diabetes. This is in addition to celiac disease and Hashimoto’s thyroid disease (dx age 4), a life-threatening peanut allergy (dx age 2) and reactive airways in infancy, later diagnosed as asthma. My husband had already been scheduled to fly out and join us later that day. We faced a decision: Continue the trip or go home? After my husband consulted with our pediatrician and the pediatric endocrinologist, we decided to continue. He brought a glucometer and insulin, we made a stop at a pharmacy and we were on our way.

There were lots of tears all around. N cried when getting poked while his bewildered brothers (S, age 3, and B, age 8) looked on. B cried out: “Why would God do this?” I cried, too. It was a shock to take in this new regimen. A week earlier, we “only” worried if N’s food was safe for him. I was so grateful that my husband knew how to manage our new medical devices. I tried in vain to reach a dietician and finally received a little information about counting carbs. We didn’t have all the information that we needed (we’d get that upon our return), but somehow we all muddled through, checking N’s blood glucose prior to each meal and giving him his insulin.*

N with his big brother days after dx on our Great Plains Trip

N with his big brother days after dx on our Great Plains Trip

It was stressful and we were grieving. Yet we were also having fun! It sounds strange but these divergent states happened simultaneously. From a chuck wagon dinner in the Black Hills to climbing Rock City in Kansas to museum visits in Saint Louis, our itinerary kept us on the move and it was exactly what we needed. In the process, N’s routine normalized. I think if we had returned home, we would have been consumed with this crisis and that wouldn’t have been good for N. I have to say that it was a wonderful family vacations in spite of this new challenge. In the years since, we have shared many recollections. No, it isn’t “The Trip that N was Diagnosed with Diabetes,” though he was diagnosed and we talk about that, too. Without consciously thinking of it, we have called it “The Great Plains Road Trip” and N’s diabetes became a part of the package.

Managing diabetes, celiac disease and a food allergy has been part of our travel package for nearly eight years now. Admittedly, it’s a challenge! We’ve had a lot of problem solving to do. How many needles, insulin penfills and epi-pens should we bring and how do we carry it all during our six week stay in Europe? How do we keep insulin, pump and CGM supplies at the right temperature during a four week road trip in hot weather? How will we manage to meet my son’s gluten-free, peanut-free diet safely, especially in places off the beaten path? Creating checklists, calling our CDE, researching online and shopping for the supplies that will meet our needs is time-consuming. It’s also been a welcome reprieve during difficult seasons that we have experienced as a family. It’s been a vice of sorts for me. The reward? Fantastic trips enjoyed by every member of the family. And cherished memories that bind us together as we resume our busy, scheduled lives.

In addition to the wonderful memories, traveling has taught N a very important lesson. It is possible to go out into the world and have your medical and dietary needs safely met. This is an anxiety provoking concept for many with these medical struggles. Witnessing the process of gathering supplies, asking questions of restaurant waitstaff and problem solving sticky situations has shown N how it’s done. What a wonderful lesson!

I invite you to join me on my journey as I share my ideas, philosophies and resources pertaining to family travel with medical conditions. Coordinating a trip is no easy task! By sharing handy websites, checklists, planning tips and more, I hope you’ll feel energized to create a family trip that you’ve been dreaming of. What has worked for your family? I can’t wait to learn from you. Happy Travels!

*Disclaimer:  Let me be clear. If you or someone you know finds themselves faced with a life changing diagnosis while on vacation, follow your doctor’s advice! If your medical doctor says you need to go home for medical treatment, then do it. By sharing this story, I am not endorsing our decision.