A week away with food allergies.

I just got back from a week away in Florida. It was first time in 3 years that we went on an airplane. In this post I am going to chronicle everything I experienced. I may do a follow up later this week but I wanted to get the important points out before I forget.

Sunday February 14th. We took our first flight in 3 years. I was a bit paranoid given all the scary posts I read online about flying with a food allergy. My boys have dairy, fish, sesame and some tree nuts. We flew just days after the British Airways news. During our flight, peanuts weren’t served but Doritos and goldfish were, as well as dinner in first class one row ahead of me and they were heating up meals. My son’s nose bothered him the whole flight.  Just goes to show you the issue with flying is more than just about the nuts.

February 15 – 20th,   we spent the bulk of our time at Disney. My boys love that place, and now I do as well. This was my 5th time, my older sons 4th, and my younger son’s 2nd. It truly is the happiest place on earth. Each time I go away I get full kitchens because I always need to cook. Not at Disney!  I was so impressed! Never have I seen such a well done practice for food allergies. Each place has an allergy menu, each time the chef would talk to us.  My kids were able to have pancakes and waffles and all the places had Tofutti or rice dream. I was also able to get kosher meat meals for them as well. Even the Italian places were able to accommodate us. Every allergy dish comes with a wooden allergen tag so you know you’re eating an allergy dish.  I am telling you I wish I could get this type of thing here in NY. In addition, on the park maps they have Epi Pen locations marked. We always have a few on us but it was good to know.

We also went to Discovery Cove.  Discovery Cove is a park run by Seaworld. It’s amazing! My kids swam in the reef with fish, stingrays and more in a saltwater reef (yes even my fish allergy child). There is also a lazy river and you can pay more to swim with dolphins. Your admission includes lunch and free snacks. There we met with a chef who got us what we needed just like Disney. You should know not only did snacks include things like goldfish, pretzels, chips but peanuts also, so no, it’s not nut free.

Finally, Saturday night we met family members in another part of Florida. We had plans to go to a chain we knew, but due to large wait we went to another place. That was not such a great Idea in the end. First, they took forever to even order, and we were sitting in the front near the open kitchen. I knew since this place had dairy, and was outside of Disney; we only eat in kosher meat places, but given where we were, I thought it was worth the risk. I was not expecting what followed. My older son, the one with the milder milk allergy started coughing, so I gave him his rescue inhaler. 20 mins later he said he felt like he had a lump in his throat and he was still tight. I looked at my more allergic son and he seemed fine. I didn’t get it. I took my other son out of the place and made the choice not to take him back in. I gave him Benadryl and we all got food to go as we didn’t even have our food yet.  Once I got him back to where we were staying I gave him a nebulizer treatment and that cleared it all up.  Both my sons and I are asthmatic I go nowhere without meds.  I still couldn’t understand why my other son didn’t react.  How is it possible? The 3 of us are all allergic to dairy and ate the same this plain pasta.  3 hours later, my younger son came into me asking for pjs. I took one look at him and knew we were going to be going to the ER. His eyes were red, itchy and swollen. Under one he was getting hives. His nose was suddenly stuffed (just like the plane) and he was having red spots and eczema on his trunk.   I gave him a double dose of Benadryl as per the Dr. on the way to the ER. Thankfully only that and a dose of steroids was all that was needed.  I can tell you though, they do not treat allergic reactions the same in Florida as here in NY. They made him wait in triage, and my husband had to beg for him to be seen. Even with action plan and history!  That said, they also didn’t keep him for observation as I am used to; scary!

Even after all that, 6 hours later, we got on a plane back to NY. All in all it was a great trip and I can’t wait to go back to Disney! The happiest place on earth for food allergy families.

Air Travel and Food Allergies

Yesterday, the food allergy community boards became very active over British Airways announcement that they will now tell people they can not consume peanut and peanut products on board. This is being hailed as a huge victory for the food allergy community.While this is a step in the right direction, the focus really should not be on removing allergens. This change, while admirable  is misguided.

Every single story that is written about air travel and food allergies has to do with peanuts. One then thinks, oh only peanuts are the issue and fine if we remove them then they risk of on board anaphylaxis is taken away. Sadly, this couldn’t be further from the truth.  Over 150 foods have been identified to cause anaphylaxis. That’s a lot of foods!  Some may argue that only peanuts cause airborne reactions. However, to someone with a dairy allergy Powder cheese products, like Doritos,pirate booty, cheez doodles all can cause the same reaction. Steaming milk could also be an issue.

The focus of the problem is misplaced.  Let’s not only think about the peanut allergy issue on flights, let’s think about all with anaphylaxis. A year ago a doctor told me a story how they had to treat someone mid flight because they had anaphylaxis to red pepper. What was worse, they had no epinephrine injector on board. The doctor had to use the epinephrine  that is used for heart attack patients.

We must ask for epinephrine auto-injector to be present on all flights. we must demand that staff be trained to respond to this type of medical emergency. We also must ask the airlines to come up with allergy accommodations for meals. Finally, if airlines are going to ask people to not eat nuts, then they also need to ask people not to eat other allergenic foods if a passenger on board is allergic. We can not make this about just one allergen or just one food!! Imagine if anti-discrimination laws applied to only one ethnic group or one religion or one particular disability. Changes need to be made to protect all individuals who may suffer from anaphylaxis. So while we celebrate and commend this public acknowledgement of the danger posed by anaphylactic peanut allergy by British Airways, we must continue fighting for changes that will offer equal protection to all individuals with allergies that pose a risk for an anaphylactic reaction.

Being A Food Allergy Mom

Being a food allergy mom.

As I write this my 12 year old, multiple allergic and asthmatic son is off at his first Bar Mitzvah that he is attending alone, without me. Am I nervous, yes, am I also nervous whether he will behave and not get in trouble. I took all the steps, called the venue ahead of time, found out menu, and told them his allergies. I reminded him before he left to ask before he ate. I also sent him off with his Epi, Benadryl and rescue  inhaler.
To say I am not worried would be a lie, I have already texted him. But food allergies and asthma aside, I would still be worried. Is he being social or playing on his phone? I think to some extent all of us mom worry and have anxiety about these things. Food allergies just add one more thing to worry about.
I think we as food allergy moms need to learn that we aren’t all that different from moms who don’t have kids with food allergies. The bigger issue is that we must give our kids the tools to manage without us constantly with them, and for us to control our fears enough so we don’t limit them. Something that I know I need to work on.