Anaphylaxis
All moms and dads love their children and want to protect them from harm. I don’t think that ever stops, it’s age-agnostic. We love our children, and will do anything for them. Unfortunately, my wife and I let our almost four-year old son down yesterday. Yesterday, exactly one week before his fourth birthday, he got really hurt and my wife and I experienced the most drastic range of emotions since our son was born with severe food allergies.
First Months
Before I dive into what happened, I’d like to take some time to go to the beginning and set some context. When our little boy was born, it was pure joy and love. His little wrinkled fingers, his cute smile, the way he slept, he was perfect. He might have cried a little more than some other babies we knew, but we didn’t think much of it. One nurse even commented that colic is a frequently used word, albeit incorrect, but she felt that he might have had something like that. We geared up for the challenge, no problem.
A few weeks after we got into the mommy/daddy rhythm, I started helping and would supplement breast milk with formula (dairy-based). Looking back now, I can sort of tell he didn’t love it, but I always thought that was because it wasn’t mommy’s milk. But this one morning, after I had given him an entire bottle, he had a reaction. Our doctor called it baby acne, but that didn’t feel right to us. We couldn’t quite describe it. We searched the internet, talked to friends, talked to another doctor at some point, then dismissed it all because it went away on its own.
Allergies
Time went on. We didn’t have another episode like that, at least not exactly like that. I remember we were about to head out to a one-year old birthday party and were eating some snacks at the house. We opened some hummus, and gave him just a tiny bit, probably enough to cover the tip of a pencil; he was a picky eater. He broke out in hives. We rushed him to the ER.
That day changed our lives, since we knew we were dealing with food-based allergies. We didn’t know what, and how severe, but this was the inflection point for all things to come. He was about 8 months old. My wife decided it was time to take him in for allergy screening. We found out that he’s severely allergic to:
- Dairy
- Tree nuts (cashews, pistachios, walnuts, etc.)
- Peanuts
- Sesame
I wanted to clarify the differences between a food intolerance, allergy and severe allergy, although this site explains it more detail. With an intolerance, the immune system is not involved in the response and it’s usually a digestive issue. With an allergy, hives and nasal symptoms might appear (just like if you have seasonal allergies). With a severe allergy, the immune system is involved in the fight and symptoms include vomiting, lethargy, loss of consciousness and potential loss of life if not treated immediately. Collectively, those are referred to as anaphylaxis. Our son is severely allergic to those things mentioned above, and his body has had an anaphylactic response on several occasions.
The reason those things happen is because the body releases histamine when exposed to an allergic substance (food), which cause blood vessels to dilate and airways to contract. When too much histamine is released too fast, blood pressure drops and one of two things happens: Either the heart will malfunction or the airways will constrict too tightly to allow oxygen into the blood.
Being A Kid
One of the toughest things we must deal with is helping him understand that he has a disability but without making him feel like he has a disability. We try to include him in events versus excluding him. For example, just going to a birthday party.
Actually, a birthday party typically has all those things that can send him to the hospital: Pizza, cake, milk, goldfish crackers, cheese puffs, cheese popcorn, etc. We will be the helicopter parents that are always hovering around him at these sort of events, and if things get too stressful or risky (like 20 kids running around a park with a slice of pizza in their hands), we will leave. If we do make it to cake time, we always bring our own allergen-free treats.
We know some parents don’t get it, they might judge us if they just met us, or think we are exaggerating a little (or a lot). I would have thought the same if I was in their shoes. I would have probably judged us too. But we want our son to live, because we love him and want to protect him. He deserves to have friends, go to school, and have fun so he can be a kid.
Incidents
I feel like there have been too many incidents where he has had anything from a small-to-extreme reaction to foods he’s allergic to. I’m pretty sure I’ve missed a few of them below. While we do our best to avoid places and foods that we know could be too dangerous, we have still had our fair share of bad moments. These are all learning lessons, and they have all been scary for him and us. I wish that no parent ever has to experience any of them, ever.
- Touched a cheese popcorn to his tongue at a birthday party before I grabbed it out of his hand and told him he couldn’t eat it. He had hives on his face and his eye turned red within 15 minutes. We (forced) him to leave the party and gave him Benadryl in the car. He was crying the entire time.
- Ate a small bit of sesame (hummus), started coughing and face had hives within 10 minutes. We gave him Benadryl and drove to the hospital. Sat outside the hospital doors for 30 minutes because his hives got better.
- Tried cheese for the first time, before we figured out he was allergic to it, he was less than 9 months old. He had hives on his face within minutes, and everyone thought it was the silicone in the bib that caused it.
- Still don’t know what happened here, but we gave him a pack of raisins and he had a pretty strong reaction to it. We checked the raisins, and some of them had what could only be described as cobwebs on them. We later found out that this could have been mold-allergy, although he never tested positive for that.
- Got touched (in the face) by a student at school, who had eaten a peanut butter jelly sandwich. His eye turned red and he had hives within minutes, and the teacher had to give him Benadryl.
- Started coughing violently at Starbucks, and wet his pants. We still aren’t sure if it was airborne milk or the pretzels he had eaten just before that read: “Produced in the same facility that handles tree nuts.” This was the first time we had used the EpiPen, in the bathroom at Starbucks, and immediately drove him to the hospital.
- Ordered noodles at a restaurant in Four Seasons, a super-meticulous establishment when it comes to food allergies. The waiter forgot to write down our son’s allergies in the correct area on the ticket. They brought butter noodles. After eating 3–4 noodles, he said: “These taste funny” and broke out in hives all over his face. His nose was stuffy. We gave him Benadryl and watched him for 20 minutes before heading home. The manager of the restaurant, and the waiter, apologized for a good 5 minutes straight and came to check on us every few minutes while we monitored him.
- When we were staying at a hotel in San Francisco, our son decided to grab a pack of Pringles from the mini bar because he recognized the logo. He didn’t know he grabbed the Sour Cream flavor, which has milk. He ate one chip before I caught him, and told him: “You can’t eat that!” He got scared, but he did have a small reaction on his chin so we gave him Benadryl and watched him breath all night long.
- My folks came to visit us in Austin, and we went to a new restaurant called Culinary Dropout that seemed like they had their act together. We order him what we almost always order him at a restaurant: Chicken (dry), pasta tossed in olive oil and we typically ask to speak with a manager to make sure they understand his allergies. Within 10 minutes, he started getting a stuffy nose and hives on his chin. We gave him Benadryl, and left the restaurant, trying to decide if we were going to the ER. The Benadryl started to work within 20 minutes, so we took our son home and watched him all night long.
Worst Reaction
Yesterday, our son ate a vegan kolache, with strawberry jam. It was at a local farmer’s market, from Austin Kolache Company. Shannon asked the usual questions: “What are the ingredients?” and “Any chance of cross-contamination?” We usually get the traditional response to the latter question: “We can never fully guarantee but do take precautions.”
He had the worst reaction we’ve experienced to-date. This was not just a cross-contamination, it was a full anaphylactic episode. It started around noon, 15 minutes after he ate part of the kolache. He started acting tired. By 12:25, he was severely lethargic. We got in the car, and he started crying and said: “I need water, just water.” When I pulled his travel cup out of my bag, he threw up all over me, himself and the car. My wife and I had questioned his lethargy moments before, wondering if he didn’t get enough sleep the night before, but that was no longer a doubt in our minds.
Pure fear went through both of us at that moment, my legs almost gave out. I looked up the closest ER, 15 minutes, and got in the car right away. He was crying the entire time. Less than 5 minutes into the drive, I felt like I was doing something wrong thing. So, I pulled over, and got his EpiPen Jr out. I asked Shannon to hold his arms up, and injected the EpiPen Jr into his left thigh. Looking back, this was first best decision we made all day.
Got back in the driver’s seat, and kept going. The drive seemed to take a long time, and another 3 minutes later, Shannon saw a sign that said: “Emergency Room” but when I looked at Google Maps on the phone, it said 11 minutes away to Dell Children’s Hospital. I said: “Oh well.” and we pulled into the driveway of the ER, and got checked in. This was the second-best decision we made.
The doctors seemed relaxed, but I found out later from the nurse that it was mainly because he appeared stable and because we told them we delivered an EpiPen. We were especially nervous since this was the first time our son ever threw up from a food allergy. This was also the first time that he didn’t have any hives, just went into anaphylaxis before any telltale signs we were used to seeing. The nurse said she has seen lots of cases, and because his heart rate and blood pressure were stable, those were all good signs. Still, no parent should ever see their child laying in a hospital bed…
We were at the hospital for 5 hours, so they could watch our son closely. He had some hives that showed up an hour into monitoring, which was new to us, as hives were almost always the first thing that showed up in all previous incidents. About 3 hours after we were admitted to the hospital, he started getting better. Although there’s always a concern for biphasic anaphylaxis, but I’ve read mixed opinions around what causes that and if there are any telltale signs.
I feel like we’ve learned enough, and read enough unfortunate stories that we won’t hesitate to use the EpiPen. Delivering that medicine could mean all the difference, and so long as we know that severe food allergies create an immune system response, we will continue to do that. We sincerely believe that a combination of quick EpiPen usage and subsequent hospitalization saved our son’s life yesterday. I rushed this one and gave him the injection in the wrong place (should be to the outer side of his thigh), but wanted to show a picture of the injection site for anyone wondering how bad it is. It’s tiny compared to the unthinkable.
Change
We’ve been through enough of this to know we need to create change every step of the way. Awareness, prevention, treatment and eradication. We’ve learned that restaurants and food businesses are not equipped and educated to the levels most allergy groups recommend. We’ve learned that most treatments are masking the underlying cause. We’ve learned that detection for most means consumption. We’re writing this article because no child deserves to die from eating…period.
So, the next time your child with food allergies has a severe reaction, please, don’t hesitate giving them an EpiPen. Don’t hesitate to take them to the hospital. Don’t hesitate to let others know, so they can learn too. And for those without food allergies in the family, please take a moment to understand them, and show compassion towards the millions of super-stressed out parents that just want their kids to be safe.
