Living With Multiple Food Allergies

In the past I’ve talked a bit about Samuel and his food allergies. Today I wanted to talk about where we’ve been, where we are, and what’s next since we’re nearing the end of Food Allergy Awareness Week,  and May is Asthma and Allergy Awareness Month,

Daiya Vegan Cheese Pizza
Making pizza with Daiya cheese

I first found out Samuel had food allergies when he was two years old. I offered him a very small bite of my scrambled eggs and about 10-15mins later he crawled into my lap and went to sleep. I didn’t think much of it because he was still napping at the time. Then I noticed what I thought were mosquito bites on his arms, but they were hives, and soon his body was covered in them. He woke up and started coughing and wheezing so I took him to the nearest ER. The Dr said it was an allergic reaction to the egg and that the next reaction would be worse. He said I needed to get him allergy tested and an epipen asap.

I was having trouble wrapping my mind around what all of this meant. I knew he was allergic to dairy, his sisters were. None of them could tolerate the trace amounts they would get through my breastmilk, so I had cut it out of my diet. No dairy and now no egg, got it. I also stayed away from peanuts because it’s one of the top allergens.
I wasn’t able to have him seen by a allergist because he didn’t have insurance, and that is a long and ridiculous story that I won’t get into.

A couple of weeks later he had a bite of a zebra cake, which I didn’t know at the time. He’s happy and playing and next thing I know he starts projectile vomiting , coughing and wheezing. I called 911. They took us to the same ER and the Dr sent us home with a script for an epipen. I couldn’t believe they were $500 for a set. So he still didn’t have one.

Fast forward several months later and he was admitted to the hospital for RSV. They were informed of his severe food allergies and sent us home with a pack of  epipen jr.
I am a firm believe in the whole everything happens for a reason. A short time later I had to give the epipen for the first time. I remember being so naive and thinking I could get him to Children’s in time and wouldn’t need to use it, but when his breathing became more labored I turned the car around and called 911. I was only 5 mins away from the house, and was on the phone with the operator when I hopped into the backseat and said a prayer before administering the epipen. He screamed and I apologized, took him out of his carseat and the ambulance pulled up. One of the EMT’s ran to the car, grabbed him from me and ran back down to the ambulance with him. They checked his vitals, made sure he was stable and we were off to Children’s.

Samuel has needed the epipen 2 more times since then and each reaction was worse and came on faster, with the last one being the most severe. We were at a family birthday party and my mother in-law put parmesan cheese in the ground meat and made hamburgers with them. I wasn’t aware of that at the time and gave him a burger with no bread. Once again the reaction came on very fast. I gave Benadryl and waited a couple of minutes, but the hives kept coming and then he started having trouble breathing, so I gave the epipen. He had a secondary reaction once the ambulance arrived and that’s never happened before. We sat outside of the house for what seemed like forever. The EMT’s were trying to figure out the right dosage for another round of Benadryl and epinephrine. If the ambulance had not arrived yet I would’ve had to administer the 2nd epipen. That’s why you always carry both with you at all times.  He could’ve died. His lips were turning blue and white, he was placed on oxygen and I could see the concern on the EMT’s faces. Once they figured out the next dose and gave it to him then the reaction stopped and he was given a breathing treatment.
That was in April 2014. We’re doing really, really good, but we can’t ever let our guard down.

I always keep the epipen and Benadryl with him at all times.
That kit goes wherever he goes 24/7.
Every child with food allergies should have an allergy kit with them.
We have two, one that goes with him and I keep one in our church kitchen since we spend a lot of time there.

Allergy Kit:

Up to date Epipen Jr
*check your expiration date: some last 6 months and some 12 months*
Practice epipen
Benadryl
Ventolin inhaler
My contact information
Asthma action plan
List of food allergies

I always give Benadryl first and then the epipen because that is what his Dr said to do. Plus, if I give the epipen first he won’t take the Benadryl because he’s so upset from getting the injection. Benadryl takes the hives down immediately and in most cases helps him sleep once he’s settled from the trauma he’s been through. The epinephrine immediately stops the anaphylaxis.

Samuel has had mild reactions that only call for Benadryl and it’s usually from touching the allergen and then he touched his face. That’s happened twice with dairy and once at Red Robin, but I’ll share that story in another post about allergy-friendly restaurants.

Everyone who has regular contact with Samuel knows to ask him or me what he can or can’t have, most people know his exact allergies. Samuel has known his allergies since he was almost 3. I absolutely love the way he advocates for himself. I’ve heard him tell adults and other children what he can’t have and why. He will send people to double check ingredients with me. His sisters help a lot with all of this as well. They know what he can and can’t have.

I bring food for him with me everywhere, but I love that my friends in Virginia and here in Ohio have been so amazing at making food for him at birthday parties, and sending me pictures with the ingredients list to make sure he can have it.  Samuels Table

Samuel had allergy testing done back in November and the following will cause an anaphylactic reaction, which we found out the hard way…. Milk, egg, peanuts, tree nuts, shellfish, penicillin, and sesame seeds. Smaller numbers were for Chicken, beef, apples, oranges, strawberries, corn, and soy. The allergist said(and I double checked)if he’s been eating the foods that he tested very low on, he can continue eating them. He gave me the option of cutting them from his diet, but I didn’t because he’s already so limited, and chicken is his favorite food.

This is our life. Food allergies are very serious, and I may joke about it with people, but part of that is my way of coping, and in the back of my mind I’m wondering when is the next reaction, and how bad will it be next time”?
I know that sounds bad, but it’s the truth of this lifestyle. It’s not if there’s another reaction – when is the next reaction. Could be years like it has been, could be tomorrow, could be months. We don’t know and that’s why we have to stay on top of this at all times.

This journey is something I will continue to write about because its not stopping anytime soon.
There’s so much to write about and I barely scratched the surface with this post, even though it’s well over 1100 words.
Samuel will have weekly allergy shots for environmental allergies. Blood draws, skin testing, and possible food challenges every 4-6 months. I’m helping him learn to read food labels, we’re finding new foods and recipes, helping continuing to educate myself and everyone who has regular contact with him.

If our story can help someone then I want to share it.