The Taynors

The Taynors

Tuesday, October 18, 2016

Navigating Life with a Food Allergy Kid

We found out Ryan (now 5 yrs old) had food allergies on his first birthday.  He had a terrible reaction to his first birthday cake that landed us in the ER.  See that Post Here.    So we have spent the past 4 years navigating the world with food allergies.

Currently, Ryan is severely allergic to peanuts and eggs, mildly allergic to tree nuts, and has a sensitivity to gluten.  When he was a baby this was really hard because I didn't know anything about food allergies.  I didn't know much about reading ingredients and substituting items and making special orders at restaurants.  But I learned quickly, the research junkie in me got on the internet and bought a ton of books and we figured out our new normal.

Well here we are 4 years later and I am hitting a new milestone- imagining his future as a big kid, teenager, even an adult, dealing with these very restrictive allergies.  And it is completely freaking me out.  Up until this time I have been completely in control.  Every where we go, I pack his food.  Lunch, snacks, desserts... whatever he needs I would bring a handy dandy lunch box and make sure he is safe.  But now that he is getting older, it is getting harder and harder to do that.  He is in more big kid situations, independent situations, that make food planning more difficult.

My brother in laws wedding two weeks ago was a perfect example.  We were going to Pennsylvania for the weekend, staying in a standard hotel room (no kitchen or anything like that) and had commitments to be at a rehearsal dinner, the wedding reception, and a breakfast with the bridal party the last day.  The boys were in the wedding, so they needed to be with us the whole weekend.  Well meal planning was hard, like really really hard.

First we got there for the rehearsal and the dinner after.  We did have a special chicken meal ordered for him (egg free, nut free, gluten free).  So we knew  he had a complete dinner, but he had a hard time not being able to participate with the rest of the people.  He couldn't have any of the appetizers or anything at the buffet, or the dessert that was ordered.  He just ate his chicken and the special cookies I brought for him.  Ryan is use to this, so it wasn't a huge deal, but I could see his frustration in being "different".

The next morning was hard, we didn't have much time and needed a quick breakfast before the wedding activities.  I brought a huge snack bag, but that didn't help with getting him a substantial meal.  The restaurant at the hotel was super basic, eggs and baked goods (Ryan can't eat either), so we scrambled to a WaWa to get him Yogurt and fruit so he could at least have something.  The day continued like this, just trying to scramble to get him any food that was safe and fill his growing belly (he eats like a teenage boy).  At home I would have made him all these meals from scratch, or have good options, but those things don't travel well.

But the actual wedding was even harder, for Ryan and for me.  He couldn't eat a single thing at the cocktail hour.  Mini slider burgers, cocktail appetizers, macaroni and cheese station... nothing.  First of all most things I was sure were either gluten or egg based, but even if I thought it might be safe, I didn't have anyone to confirm it with.  The wait staff was very nice, but they had not idea the ingredients in each individual appetizer (or if it was cross contaminated with egg or nut).  Ryan was hungry, and cranky, and just wanted to eat the things everyone else was eating.

For dinner, he had his "safe" meal- same thing as the night before.  Plain chicken breast with vegetables (poor kid, so boring).  But that was the only thing these places could offer him that was confirmed safe.    Then dessert came around, and again he couldn't eat a thing.  Most was baked with eggs, and again no way to confirm ingredients of each item, lots of desserts with nuts.  So he had a cookie I brought for him as a treat.

And then to top it all off, breakfast the next morning.  The bridal party picked this diner in Philly known for its specialty eggs.  I assumed we would be able to get at least fruit or something so that Ryan could go and hang out with the group.  Well I was wrong.  They had not fruit or yogurt or oatmeal, or anything at all he could eat.  Not a single thing.  The owner of the restaurant was very helpful, he closed down one of the griddles and cleaned it completely so Ryan could have some bacon that was cooked separate from the eggs, but that was it.  It was heartbreaking for me to see how much he couldn't fit in with the gang.  Mike ran out to WaWa again to get him some yogurt so he could at least have breakfast.

Bottom line, it sucked for him.  He was at a big giant party weekend with such great food, and he couldn't participate at all.  That lead me to the "what about the rest of his life" thoughts.  Will he never eat anything at a cocktail party?  Will he ever get to go out to the diner for breakfast with his college friends to talk about the night before?  Will he ever get to try new and unique foods at the new hot restaurant in town?  Or eat a wedding cake?  What about college dorm food?  Of the girl he wants to kiss for the first time?  Is he going to have to  stop in the moment before leaning in for a first kiss to say "hey what did you eat for lunch today"?  How is his life going to be majorly impacted by having food allergies to such a common food like eggs?

The doctor does not think he is going to outgrow the allergies.  His levels were still so high at age 5 that he doesn't have much hope.  And I won't be able to pack all of his meals, where ever he goes forever.  This is a tough pill to swallow.  Food allergies in a baby/toddler is do-able, the rest of their lives is the hard part.  Luckily my BFF talked me off the ledge a little bit, we have no idea what world our kids will live in by time they are adults.  Maybe there will be better options, or new allergy treatments to offer a cure, who knows.  I sure hope there is some kind of change  because based on the the number of children that have food allergies, our future needs some options.  I won't even get into my rant about why children have so many food allergies these days, that is a conversation for another day!

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