Traveling with children is stressful enough with the plans, the toys, the games, the packing, the whining, the husband who only knows how to pack for himself....yes I said it....but I still love him anyway. Add in life threatening allergies.........(silence...more silence..... insert the screeching halt sound effect here please.....thanks).
Before I go any further here, I need to preface this "read" with the following: I am a mom who is loving, kind, caring, worried, anxious, overprotective...you know, all that fun stuff. I also like to laugh and try to find humor in almost everything. So basically, what I am trying to say here is, I am a perfectly imperfect mom who isn't too proud to make fun of herself, others, and situations because many parts of life are comical so why not get a laugh out of it? Even in times of stress and in this case, a more serious topic, I still am me and I try to find humor in things. If I didn't do this, I would most likely just be walking around crying and worrying all the time. Humor and comedy is good for the soul and helps me cope with negative crap that life torpedoes at us from time to time. My story telling is in no way meant to say I don't take people's medical issues seriously because I most certainly do. We all just have different ways of handling stuff so I hope if you are reading this, you will laugh, learn and most of all, look to understand.
So here we go. I will take you on a little journey. I am a momma to three wonderful children. My eldest son has a life threatening allergy to peanuts. He is also allergic to sesame, cashews, pistachios, and chick peas however his most severe allergy is peanut. Traveling in our family means this mom is on a mission for ultimate preparedness in relation to all things food and allergy related. Each trip involves days worth of grocery runs to various stores for what my husband calls "more food than we could ever eat" to bring with us. By now, we have this all down to a pretty consistent pre travel routine. My husband grumbles and complains as he tries to cram all of the food, toys, stuffed animals, pillows, stroller, pack n play, and bags into the mid size SUV while also leaving room for the 5 humans that also need to fit. Like clockwork, he enters the house for another load of stuff and very assertively states that we don't need all of this food, or all of this stuff and we can buy it when we get there! Well, guess what honey, that is not how I roll. Been there done that and you know what happened? We got to Virginia Beach and I drove around for hours visiting unfamiliar markets carefully reading labels while everyone had fun at the resort pool. When I got back to the pool with the provisions, the skies opened up and it rained for the remainder of the 6 day vacation. I didn't even get to put on 1 of the 7 bathing suits I brought!!! I took this as a sign from God not to listen to my husband ever again, and also to just travel with a good amount of food to at least keep the family going for a couple days.
My 3 babies eating my gourmet cooking! Chicken nuggets and fries, peanut free of course!
The thing about having a child with a life threatening allergy that I never realized before I was a mom to one, was how much this places a constant risk of harm everywhere we go. You think ...allergic to nuts, ohh kaaayyy...well just stay away from them then duh! Ummm, sorry....nope. Doesn't work that way. Nuts are everywhere. It might be fine and well that I don't walk around with a bag of peanuts shoving them in my face, but a lot of people do!! I grew up living off of PB and J sandwiches from age 5 to 21. I love nuts of all kinds and they are healthy so of course they are popular! More restaurants than not have nut products in their kitchens and although the increase in allergies has caused a lot of restaurants to adopt really careful practices to reduce cross contamination, (the accidental contamination of food that is meant to be safe with an unsafe allergen) the fact of the matter is, when you have a life threatening allergy, it's just not worth the risk.
Life threatening allergy means, life or death. We are not talking about hives or a belly ache. We are talking about difficulty breathing, heart rate concerns, vomiting and the potential for anaphylactic shock which can lead to death. This is not something that I will ever joke about because it is not funny. I feel the need to emphasize this because I encounter people every single day who don't seem to understand this concept and this is why traveling is so much more difficult.
Once we knew of my son's allergy, in my head I decided, "that's it! we are never flying in a plane anywhere!" I figured well my husband and I had traveled the world a bit, he went to Aruba once, and I went to the Bahamas and Cancun for college spring break.....it was a good run back in the day when we could hop on a plane with no worries.... now it's time to get the road maps because we were only going where the paved path would take us! Sounds a little silly right? This wasn't a joke...this was our plan. It worked out pretty good too ...we made it 3 years without any inkling of the need to fly. We traveled up and down the coast visiting various beach cities, and some ski destinations. We always book a room with a kitchen unless it isn't possible and when that happens, we pack an enormous cooler and bring a toaster oven so we can cook in our room. I consider myself very resourceful in this way, my husband has some other choice words he uses to describe me but he is appreciative of my efforts overall. We bought a camper which was perfect for my paranoia because it gave me ultimate control and I felt comfortable knowing that there were no peanuts anywhere. Planes??? What planes??? We didn't need them ever again!!
Apparently I hadn't thought this plan all the way through. I had not thought to call and cancel the Disney channel, or to abolish all things Disney from our lives. Hindsight 20/20, I should have seen this coming. One day, after a fresh viewing of the movie "A Bug's Life," my two children ( I only had 2 then) said "MOM!! Mama! Mommeee!!! Can we go to Disney World? Look, it looks soooo fun" (pointing to the advertisements they cleverly stuck at the end of the DVD). I looked at my husband and said "Sure, we can drive to Disney World! It's only 24 hours away!!" My husband looked at me and said "We are not driving no 24 hours....if we are going, we are flying." My heart sank a little but I also knew 24 hours in the car listening to "He hit me!"...."Well you spit on me!"...."It was an accident!" ......"I don't care!!" ...."I need to PEE now! I can't hold it!!" .. would result in me abolishing travel all together. What option did we have?
As a child, I didn't go to Disney. My parents are not flying enthusiasts and there were many life events going on during prime Disney time that prevented us from going. I wasn't too upset about it. I just figured I would do it when I was older. When I went there as and adult with my boyfriend (who is now my husband), it was great but I remember thinking, this is such an amazing place and I want to bring my kids here some day! "Some day" was here I guess....
In my my best manic and overly excited voice and cadence....in my head I was having a very bouncy chat with myself...."Okay then, we are doing this....RIGHT? Are we doing this? You only live once! When in Rome....Say La Vi! Carpe Diem!" Every motivational pep talk quote was going through my head as I also was fighting off hyperventilating at the thought of flying with kids period, let alone with an allergic child. I got myself some "mommy medicine" .....as if you don't know what I am talking about.....red wine.....yeah...sure did!! Poured myself a healthy quadruple serving size glass and decided to get to planning. I joined Facebook groups for allergy aware parents. I joined twitter groups. I called Disney. I read blogs and reached out to strangers for their help on what airlines and how to go about even attempting to book a flight with the right accommodations to keep my son safe. I started a notebook and I was filling pages with information and resources.
I had heard some good things about Southwest so I called and spoke to a very nice guy. He assured me with such grand confidence that the flight I had just booked with him would be designated as "allergy aware for peanuts" and that no nuts would be served on the plane for the duration of that day's flights to minimize the risk to my son. I got off the phone and I was so relieved! My next call was to Disney and again, a wonderfully informative confident young lady let me know about all of the "nut free" and/or allergen aware places that we could eat at Disney. I was still planning on doing my own food shopping once we got there but it was nice to know we had options.
So it was all set. We were booked and there was no turning back now. The big day came. We got a ride from family to the airport and headed to the baggage claim. My bag was over weight by like 20 pounds as usual so I had to start the embarrassing process of unloading it in front of strangers.....pulling out my underwear and stuffing them in my carry on, grabbing 2 of my 4 pairs of 4 inch high wedge sandals and doing the same. Everyone knows when you go to Disney, the best shoes to wear are 4 inch wedges. It's always good to have the basic colors black, brown, white, and red checkered......the bare minimum really and I was not leaving any shoes behind! I got my bag to an acceptable limit after 3 minutes of shedding and re packing and we were off to the boarding area.
So far so good. We get in line. No one had mentioned anything to us about having any special pre boarding privileges so we just stood in the family line. I learned after the fact, we were supposed to be able to board first to pick our seats and clean them in order to ensure safety. We boarded with everyone else and found seats. My butt had not even had a chance to hit the cold barely cushioned seat when I saw something that sent me into a panic attack.
Peanuts....EVERYWHERE!!! This is not a joke. There were peanuts all over the floor. I immediately did some deep breaths and self talk and got my wipes and started cleaning off the seats and foldable trays and anything I could. I wanted to cry, scream, and freak out but I had to hold it together for my little man. I didn't say a word to my son, and quietly called the attendant over and informed her of the situation. She gave me that look that no one wants to see. In words, her face said "Oh BLEEEP!" except replace bleep with any swear word you choose. She said " I am sorry but we were not informed and this flight has been serving peanuts all day. " I honestly thought I was going to have to go Jerry Springer on this woman at that moment but I am a kind, caring, and loving mom and I can't go around beating people up despite my extreme fury in that moment.....so I held it together. I said "what do we do now? " She left and returned and let us know that no peanuts would be served on our 150 minute flight and that they would make an announcement about the allergy on the flight and encourage passengers to refrain from eating peanuts. I made sure I had 2 epi pens in my reach with an additional 2 in my overhead compartment and we were off.
We arrived safely with no issues but it was the longest 150 minute flight I have ever had. I had a sick feeling in my stomach the entire time. I was scared and nervous and had my eye on my son every second. We arrived to our resort and in true ME style, Dad and the kids hit the resort pool and mommy drove off in the rental car to find some grub. We had a great vacation with only 1 other incident when children decided to bring their bags of peanuts into the resort outdoor kiddie pool. As these kids were throwing peanuts into their faces (as I mentioned many people do...) peanuts were falling into the pool. Since all kids swim with mouths wide open and practice good hygiene by even drinking pool water time to time, we just decided to leave the pool and do something else that day.
We learned a lot on this trip. Prior to our trip home, I called Southwest and let them know what happened and worked to ensure this would not happen again. We were given more specific instructions to ensure success as well as informed that we could board first. The flight home was great. No concerns. My faith was restored and I felt like maybe in another 20 years, we could fly again.....just maybe.
In August of 2017 my baby girl came along. My middle son was allergy tested and has no known allergies and so far my baby girl doesn't either. We are hopeful that this is a good sign that they will not have food allergies but the fact of it is, food allergies are unpredictable and can come on at any time.
Being the overprotective mommy that I am, I am always reading and learning in order to do what I can to make sure my children are healthy and safe. It's interesting how things work out. I joined all of these support groups for parents with allergies in order to find out info on safe traveling which I did, but I learned so much more. I learned about food desensitization also known as Oral Immunotherapy (OIT). This process trains the body to tolerate an allergen by introducing the allergen in tiny doses gradually increasing them under doctor supervision. We decided to go for it. The closest clinic we found was the New England Food and Allergy Treatment Center in CT. We were pros at road trips so we said what the hay. Insurance said it would be covered so we had that on our side, what's a little gas money and some days off work and school? We traveled there every two weeks for a year and today, my son can eat 3 peanut M &Ms per day. He actually has to eat them each day in order to keep his immune system recognition of the peanut. He cannot eat more than this unless we continue going to the clinic and build up his tolerance with medical supervision. Unfortunately, despite being informed we had insurance coverage, our insurance came back 6 months into treatment and denied coverage so we have had to stop going to the clinic while we try to figure things out. Not only have I become super educated and resourceful about traveling with allergies, I have also become an advocate for treatment, insurance coverage for various treatments such as OIT, and I have become a member of a huge network of allergy parents and doctors.
There is so much research going on that I am very hopeful for continued progress and options for people suffering with food allergies. There have been way too many food allergy deaths, several that occurred while traveling, that could have been prevented with proper labeling, food preparation practices, and with the various treatment options. OIT and sublingual immuno therapy (SLIT) are being practiced in clinics all over the country but these options are not being promoted or shared with allergy patients. Everything I know, I learned on my own through the groups and contacts that I have made. When I asked our local allergist about treatment options for my son's allergy a few years ago, she simply said "there are none" even though there were. The issue is that many insurance companies are not considering these options as valid or research based and categorize them as "experimental" despite extensive research and valid success rates.
Alrighty! Enough serious talk! Bottom line: allergies suck. Life threatening food allergies are terrifying. Good news: There are ways to travel safely and there is a HUGE community of people like myself willing to help others figure this all out. I know many families that limit traveling or don't travel at all due to children's food allergies and I totally get it and I would never try to talk someone into traveling if they were not comfortable. Things are getting better though as organizations like FARE, No NUT Traveler, OIT WORKS, No Nut Moms Group, and some of the larger allergy specialists continue to diligently advocate for improved labeling laws and travel safety protocols.
Our family is headed on our next road trip to Virginia this month! We can't wait! This will be our first big trip since our son underwent OIT and that means less worry and so much more freedom for us and for him since the risk for a life threatening reaction has been greatly reduced. He is still considered allergic to peanuts, but we will take what we can get and we are in a way better place than 3 years ago when a small little piece of a nut would send him to the ER. My husband got smart and went out and bought a little tow behind trailer so now we have plenty of room for all the crap and food! We even have room for bikes which we always bring and maybe use once! Don't worry though, even with the trailer, he still does a lot of swearing about the fact we have so much kid crap and crap crap and that we insist on bringing it all when we go. I always like to say...it's good to work yourself up into a good sweat and stress storm before a vacation. It makes the relaxing and fun times that much more sweet!!! Thanks for reading!!
My son and daughter at the OIT clinic after he had his up dose.