Four years ago, I never would have thought watching my child eat a cupcake would make me cry. Silly? Perhaps, but that is exactly what happened a week or so ago. I’ve mentioned before how it is difficult to travel with a child having allergies, but it bears repeating for the sake of this entry. Getting ready to take my little family on our trip to Disney World was exciting, for sure. However, I was prepared to be disappointed by having to pay for our son’s meals that he wouldn’t be able to eat. I was very wrong.

Starting our trip in Buffalo, I thought I would brace myself, prepare for doses of Benadryl, nebulizer treatments, and perhaps even having to use the EpiPen, should some well-meaning server accidentally grab the wrong dessert. I packed the entire allergy kit and then some. I ordered special allergy-free treats and rice milk to be delivered to our hotel room. Surely, this would be a lifesaver.

We had an uneventful flight, and were whisked away to our resort. Having unpacked our luggage, we made our way to the dining area at our place of lodging. I brought along a snack bar and bottle of milk, just in case. We lined up in our line to order lunch, and I mentioned to the server that my son had allergies, multiple and severe. She said, “hold on, let me get the chef”. Still scoffing a bit, and expecting to be handed a bag of potato chips and a hot dog, I waited off to the side while my dear hubby ordered his and my lunch. The chef came out of the kitchen with his checkpad in hand. He greeted M with a big smile and a high five, and asked me, “what would he like to eat today?” I told him ideally, a hamburger, no bun, and some fries. He said that was no problem, but he had a bun if we wanted it.

What?

Our tray came out with a fantastic hamburger, the same buns I have to special order at home, hand cut fries, fried in a separate fryer to protect against cross contamination, carrot sticks, Rice Milk and…chocolate cupcakes with frosting. He lacked for nothing.

This was our dining experience the entire rest of our trip. Not, “let me see IF we can do ANYTHING”, but rather, “would he like beef, chicken or pork? fries? veggies? cookies or cupcakes?” Whole buffets with real options, with flavors and textures!

Dear readers, this was truly a wonderful thing.

We also ran across an amazing bakery while there, and that is how my sweet M* got to taste real donuts, bagels, different kinds of cookies, cornbread and more. It was one of those times when we felt like normal parents, able to offer choices and things that looked just like everyone else’s food. It was amazing.

No lesson here, other than sometimes life is surprising in very good ways. We felt blessed by the options we were given, and now I’m on a mission: make M* donuts- not the ones that tast almost like normal, but like the ones he had on vacation, with the pink frosting. Seeing his eyes light up, and watching him share in a true kid experience was priceless.

This vacation was one of a kind, and will not be forgotten. Hubby and I are still in awe of how well we were cared for, and how happy M* was to be one of the kids, just eating what was on his plate. He didn’t once have to ask us, “may I have this, or will it make me itchy?”

Magical, to say the least.

My little man is off to pre-k. He has been going for two weeks now, three days a week. The cool thing about his school is that he knows his teachers from a short summer program he attended, and his one teacher is a friend of a close friend, and we kind of know her. She happens to know M* very well, and is fully aware of his allergy needs. I am learning from her just how to provide for M* in the future, what to say to teachers to make them aware, and I’m learning that it is okay to advocate for my child. It isn’t a problem, or an inconvenience. It is a necessity and an education for others as well. I hope that our experience helps others in this situation.

Starting with things as simple as making sure he goes to school with a full tummy so that he isn’t tempted by other kids’ snacks before it is time, it is imperative to prepare for the full day. If he is full and happy, he can wait until everyone else is situated and then have his teachers help him find a clean place to put out his snack. He has a folder in his backpack where the teacher and I can communicate, as any child would have, but ours is specifically regarding food.

His backpack has a little pocket with his EpiPen, Benadryl and dosing sheet, list of allergens, and list of perfectly safe common snacks. His teacher has sent me a text message already, double checking on a particular brand of juice, and it was so reassuring to know that she is actively thinking about this. Once he gets to elementary school, this may change, since I know the classes will be larger. It is my hope that M* will find his voice and be aware of his allergies and just how important it is to be careful of what he eats.

We provide a box of both sweet and salty M* safe snacks to leave at the school so that the teacher can put out what is closest to what everyone else is having. She tells me when there is a birthday in the class so that I can pack a special treat so he doesn’t feel left out. Thinking ahead, I know this will be the hardest for him to deal with as a kid. Those days I also have to send in a special drink, in case the snack has milk sent in with it. That is one of my biggest fears. Milk is a huge trigger, and would send him into anaphylactic shock immediately. I say my prayers so hard on those days. I know he is being watched, and is not inclined to try anything new, but it still makes me worry.

School has been just amazing for our family. In the last three weeks, I have seen my toddler transform into a true “kid”. He recites his letters and numbers, yells out the month of the year (Sep-tem-berrrr) while he should be napping, sings random songs, and if a timer goes off with a bell sound, he declares it is time to clean up. I just love it! In the grand scheme of things, food allergies are the least of our worries. He is healthy, happy and growing like a little cute weed.

What a blessing to live in an age where we can find out what is wrong when something happens. We have access to food, water and friends when we are in need. Allergies are confusing and scary, but with consistent actions and careful planning, it is a lot less daunting. Every day with my M* teaches me something new, and I am grateful for the moments where I am not in control. They teach me to be grateful for the miracle that is normal, everyday life – like preschool and all of its crayon-covered glory.

Gluten-free & allergen-friendly cookies, snacks, granola & lentil chips from Enjoy Life Foods.

Wonderful company, with delicious snacks and treats for my M*!

This is what’s cooking today! Just from posting my first few entries, an amazing thing has happened: I’m trying out recipes. One of my first readers (Thank you, Beth!) hooked me up with an amazing network, which I will chat about with you all in a later post. Through some digging, and a little side googling, some recipes have been hitting M*’s plate. I’m on a mission to get him to eat better breakfasts than just an apple and a cup of milk. He is kind of a picky eater, but I have been taking the easy way out and just offering the whole versions of foods, instead of breads and things like that. We shall see what happens. If he likes this, there is a fabulous looking waffle recipe that I really want to try out.

Amazing banana bread recipe (gluten-free, egg-free, sugar-free, dairy-free).
The biggest challenge for me with egg, milk and wheat allergies has been finding baking recipes that produce a tender, yummy version of the desserts people take for granted. I’m hoping to perfect a homemade cookie by the time M* goes to pre-k so that he can enjoy cookies when his classmates do, or perhaps bring them in as a snack to share.

This is my little man’s reaction to 1/2 tsp of milk, per our first pediatrician’s request at our new home. 3 minutes had lapsed from when he ingested the milk. It was hormone-free milk, fresh and served with known allergen-free foods, pictured in the background.

As you can see by his precious little grin, he is not concerned or bothered by most of the symptoms he experiences. We have learned to react quickly to hives and other issues, but this is just to demonstrate the sensitive nature of his reactivity. Since that incident, I know how to communicate to any medical provider or food handler just how important it is to avoid dairy at all costs. As with most allergies, repeated exposure may result in increasingly dramatic reactions.

This marks my initial plunge into the blogging medium. I’ve been hesitant to start writing for several reasons. The main two are that I’m worried to come across narcissistic in many ways, and my writing has suffered during the (some number bigger than I care to admit)years since college.,

However, the main purpose for this blog would be to educate, share experiences, and offer encouragement to other mothers, caretakers, family members and friends of people with multiple, severe allergies.

Tonight seemed like the perfect time for me to start. One event, albeit small, kind of triggered me to just go for it.

We were eating  dinner out with my son and husband and good friends. Our order for my son came out wrong twice, and we ended up cancelling it alltogether. My son M* has many allergies, almost all of which are food related, and all cause severe reactions, ranging from hives to projectile vomiting and/or anaphalactic reaction. Our hope is that he will outgrow them in time, but our medical providers at this point can not give us a definite answer.

My experience with allergies has been enlightening, frustrating, infuriating, made me feel helpless, ignorant and finally empowered.

When my sweet son, who is now a healthy and happy 2 1/2 year old, was about 4 months old, he began experiencing severe full-body rashes and itching combined with colic. True, crying all day and all night colic. I began noticing a pattern with his discomfort. I presented my idea to my pediatrician at our 5 month checkup, and suggested that he may have a milk allergy. I was told there was a very small chance of that, since he was very young, and was breast fed. Being a first time mom, I had no idea how very key it is to follow mommy instincts. So I then took the advice of the doctors, which was to treat his very uncomfortable, very unpleasant excema, and try to keep his tummy calm by feeding often, making sure he was swaddled, etc. We tried every trick in the book to no avail.

By the time his 6 month checkup came around, I asked again if we could just try something to see if he possibly had a milk allergy. They told me it would take up to 6 weeks to clear out of his system if it was dairy related, but I was welcome to try it, and to switch him to formula to see if that would help. SO…Valentine’s Day evening my husband and I were out for a nice dinner, and took M* with us, since he would have cried for anyone the entire time, due to his discomfort and belly pain. Dinner went well, candlelight, soft music…and then we ordered dessert. Thinking to savor a few romantic moments, we chose then to try out formula. He took the bottle like a pro, since he had had a few pumped breastmilk bottles before. Just as my husband readjusted him to burp him and put him back in his seat, the dessert showed up. As did the projectile vomiting. And then we knew, we had to do something.

I started down the path of eliminating foods from my diet one at a time. I took out dairy completely for 2 weeks, and lo and behold, the excema started clearing. I started noticing more clear patches, and if anyone came for a visit and didn’t wash their hands after handling or eating dairy, and either held him or kissed him, he would get a red, blotchy patch on his face. Eggs followed quickly in the “foods never to be had again” category. When I had wheat, he had loose bowel movements the following day. Every food that he was allergic to slowly came to light, and I removed completely from my diet. My one regret is that I couldn’t have breastfed longer, but I was wearing out quickly, and didn’t have enough knowledge of the topic at that time to compensate for my dietary changes. We made it to 9 months breastfeeding, and then our pediatrician gave him soy formula, since Nutramigen was not only expensive, but my M* was old enough to know that THAT stuff was nasty, no thank you!

My little family relocated when M* was about a year old. We moved to a wonderful, quiet town very much like my hometown. We settled in happily, only to have M* contract RSV within the first two months, and pneumonia twice in the following month. Our second pediatrician later, I was taken seriously and not disregarded as a crazed first-time mother. We went for allergy testing, and were surprised and relieved to know that we had some answers.
His allergies are now under control, since they are known. We have a plan of action, always travel with Benadryl, an Epi Pen and Gluten Free, Dairy Free, Egg Free, Casein Free, Nut Free, Sesame Free snacks and a sense of humor. He is allergic to wheat (though not truly gluten intolerant…as I learned, there is a difference), soy (yep…the very same soy that was in the formula…:headsmack:), eggs, peanuts, walnuts, brazil nuts, dairy (which is in just about everything, and is different than lactose intolerence), sesame,  shrimp, mildew, dogs, cats…and a few others that are just random and don’t really appear in much. I believe he also has mild belly discomfort after the consumption of certain dyes.

SO…today we went to a chain restaurant where we have often eaten together. I generally have a regular meal that contains butter and shrimp, and we always order a plain hamburger (no bun, no cheese, no condiments) and fries. We know the restaurants that carry safe fries, that are unbreaded, and that do not use peanut oil. This particular dining establishment is always very accomodating to our needs. Tonight, when I placed my order for M*, the server came back with the burger on a bun. This isn’t a huge issue usually, since contact with wheat is not a problem for him, just the consumption. I order it without just so they don’t waste the bun. BUT tonight when it got to the table, the bun had very clearly been grilled with butter. I asked the server if she could please have them refire the burger, as it would make him break out into hives immediately and could cause breathing issues. She was apologetic. When she returned to the table, she said that the cook told her to cancel the burger, as they COAT their grills with butter before anything is cooked.
Dear readers, I have ordered many times here, stressing that he has a severe dairy allergy. He has always had a few hives after we eat there, but I had blamed it on my own meal, thinking perhaps my own inattentive actions had somehow contaminated his food. Now I know that I need to be very specific, and ask, ask, ask. It may annoy the server or my fellow diners, but my child’s life is not worth the risk. I almost feel back to square one. It was a rookie mistake to trust that people know what I mean by “dairy” allergy.

I hope with this blog to continue to share my experiences of navigating the fields of playgroups, public eating, cooking, breastfeeding a child with allergies, family acceptance and education, self education, doctor relationships and respect, and -very soon- sending a child to school with more than 5 common allergies. God bless their little sharing hearts…

Let me know what you would like to read about regarding this topic, and I will oblige, most likely!