Two teenagers died in one week in September.
Not car accidents.
It was peanuts.
FOOD ALLERGIES. Peanuts.
One a 16-year-old bit into a s’more laced (yes, I’m using that word) with peanut butter at a homecoming bonfire.
Another, a freshman in college. The 18-year-old drank a smoothie (one she’d ordered before). With peanut and dairy allergies she went into anaphylaxis.
In BOTH cases the teenagers did NOT have their EpiPen or Auvi-Q, the life saving medicine they need to keep breathing.
These are the stories that make up my nightmares.
In the last couple weeks, I have randomly burst out in tears thinking of the 16-year-old musician or the 18-year-old just starting the rest of her life at college.
One night last week, I just stared at my son in his bed. I watched him breath in and out, his stomach rising and falling. I closed my eyes, partly to stop the forming tears, partly to say a quick prayer, Please let him breathe, always.
My son has severe peanut, tree nut and shellfish allergies.
I’m trying to prepare him for a lifetime of avoiding those foods so he can have that – a long lifetime.
These are the five things I want my food allergic boy to know.
1. Never Leave Home Without the EpiPen (or Auvi-Q)
Especially in light of the two recent deaths where a simple epinephrine shot could have possibly saved these two teens, I have been focusing on this. There is NO excuse EVER to leave home without the EpiPen.
This week my husband was taking my son to get his haircut. Quick 15-20 minute trip, in and out. It was going to be easy. As my husband and J.C. walked out the door, I yelled, “Don’t forget the EpiPen.”
My husband responded, “We don’t need it. We’re just going to the salon.” I hounded him with the story of kids who haven’t survived accidental contamination.
He still pushed back, “Well where am I supposed to put it?”
Quick-thinking-me grabbed my son’s Snoopy lunchbox, “How about here?”
He responded, “I don’t need a purse, I’m not a chick.” (Yeah, I know – don’t get me started).
That’s when I realized how important my husband’s support would be here, “In ten years J.C. is going to say those exact words, he’s going to say it’s inconvenient, it’s hard to take with him, he’s not going to eat anything – the list goes on. We need to teach him NOW that taking the EpiPen is nonnegotiable.”
My husband realized I was right (poor guy finds himself in that spot a lot – hehe) and showed J.C. how he was going to put the EpiPen in his pocket that was “just big enough.”
Since, I will ask J.C. to “grab the EpiPen” before we leave. It’s become his job to put it in the diaper bag before we walk out the door.
2. To Never Eat Without the EpiPen (or Auvi-Q)
This week I got home from work and threw the kids in the car. I had a meeting to get to and ten minutes to get there. As I buckled the boys in I promised we would grab Sonic on the way back from the meeting.
When the meeting was over, we headed to Sonic. While my son waited to get his Wacky Pack, I realized we didn’t have the EpiPen on us. In the chaos of leaving, I had forgotten it.
My first thought, We have had this very same Wacky Pack so many times. He will be fine. If he’s not, we’re only 10 minutes away from home. We will be fine. Then flashed in my mind the famous Sonic shakes. What makes fun summer memories for some, mean my worst fears – Reese’s Peanut Butter Cups, turtle pecan, Snickers.
There’s no way I was going to risk my son’s life for a rumbling in his tummy.
We had one more quick time-sensitive errand to run. We turned out of the drive-thru line. We quickly checked the errand off the list and returned. We ordered the food. We drove all the way home. Only then, when we had the EpiPen within view, did he eat the meal that has been safe so many times before. And yes, it happened about an hour and a half after lunchtime. And yes, he did not have a reaction. But the risk is just not worth it. One single employee snacking on Reese’s one second and putting a straw in his drink the next is all it takes.
I talked this through with him the whole time.
We do not eat anything – even the familiar – if we’re not within arm’s reach of the EpiPen.
3. If There’s a Question – Skip It
As a family we’ve practiced this for two years. The baked goods at a friend’s party, the candy in the quarter machines, the treats in church – we skip them all. The only way he can eat them is if I am able to check the ingredients. He, already, at the age of three, has turned down candy because he doesn’t know what it is in it. Trust me, this is quite the accomplishment for my pint-sized sugar addict.
He asks, explains his allergy and later tells me, “They thought I didn’t have allergies.”
We also have a deal. If he has to feel left out for a moment, later I’ll take him to the store and we’ll pick out any safe yummy treat.
4. Always Read Ingredients
Our grocery shopping list is pretty typical – bread, chicken broth, Cheerios. The basics. Several months ago, as I read the ingredients of Cheerios for the billionth time, I started justifying in my mind I am wasting so much time with this. I’m sure most of these products are fine. I can probably stop reading the ingredients of our staples. I started throwing things in the cart willy-nilly (like a regular shopper!). When I got to the bread, I tossed it in the cart. Look at me, I’m not a paranoid allergy mom! I just throw stuff in the cart. We’ve eaten this. We’re good.
A tiny little voice in my head told me to knock it off. It reminded me of the warning I’ve always seen, “Read the ingredients every time.” I picked up the bread, flipped it over and read, “Produced in a facility with tree nuts.” ARE YOU KIDDING ME? We’ve had this bread for two years. Apparently, the company switched bakeries. I panicked – remember that paranoid allergy mom? She was back. I was digging through the cart like a mad person. Grabbing items, reading labels, tossing them back in.
All of our other foods that we’ve bought several times before were fine. Since, they’ve all been fine. But I still check the labels. After that experience, I will always check.
5. Food Allergies Can Kill
We don’t use that word, “kill” in our home. In fact, we’ve never told J.C. that his life hangs in the balance based on his diet. We’ve never explained to him if he eats peanuts, tree nuts of shellfish he could die. We will. It’s just not time. He knows he will be sick. He knows he won’t be able to breathe. He knows his whole body will itch “inside and out” as we say. He knows he won’t be able to see because his eyes become so swollen he can’t open them.
I’m just not ready to tell a 3-year-old what food allergies really mean.
There will be a day for this heartbreaking conversation. Most likely before he heads off into the big scary world (eh hem, kindergarten) that we’ll have to have a serious conversation about consequences.
It’s something he will have to know before he makes choices about what goes into his body.
All of this, is all I can do. All I can do is teach him and pray he listens. Pray he doesn’t find himself accidentally gasping for breath, explaining to a friend he doesn’t have his EpiPen.
Pray he will be able to breathe, always.