It’s All Suspect

My last post left you hanging a little bit. If you haven’t read the post titled, Now This is A Story All About How, go check it out. Go on, I’ll wait…

Ok, cool. Now I’m sure some of you chose not to read it so here is what you missed:

A peanut butter cookie almost killed one of my children when he was 15-months-old. It was terrifying. I described the event in detail. It altered how we approach pretty much everything in our daily lives. I referenced The Fresh Prince of Bel Air theme song a few times and I’m hoping at least a few people got the references. 

Now if that wrap up didn’t convince you to read the post then I don’t know what will.  But now that you’re to this point, here we go…

I was eight months pregnant with Manning when Marshall, at 15-months-old, had his anaphylactic reaction to peanuts. I am still amazed it didn’t put me into labor that night.  After a couple of days went by, I found a few online support groups for moms who have kids with food allergies. I found one national group that was my go-to for information.  Sweet, I thought, I can get educated about this whole allergy thing, see how ‘normal’ it is, and learn tips on how to keep him safe. If only it was that simple. Within a couple of days all hell broke loose (hang on, I’ll get to this part soon).

So, at this point the traumatic experience of Marshall’s reaction was still extremely fresh. There’s something about watching your terrified, suffering, screaming baby get stripped naked and hooked up to IVs that kinda sorta sticks with ya. I immediately started educating myself about food allergies and discovered what a huge difference there is between a food allergy and food intolerance/sensitivities. Truth—there is a big difference. Big. Huge.

I was scared. I was mad. I was so, so, so mad at the world. It took every ounce in me not to lose it on someone who would tell me they understood exactly what I was going through because they were lactose intolerant or something similar. I was frustrated and annoyed with these people who were only trying to relate somehow unknowingly making the situation much, much worse.

It was like, Big whoop Brenda. You’ll drink some milk, have a tummy ache, and risk crapping your pants.  My. Kid. Could. Die. Yeah, like stop breathing, go into cardiac arrest, you know, death*.

These first days after the reaction were so overwhelming, but I knew I needed to educate myself. I kept obsessively researching food allergy information online and would scroll through the support group discussions constantly. Acronyms and abbreviations such as PN/TN and ANA** were used in these groups constantly and the term comfort level*** was all over posts when people were asking about safe food options.

I wanted to understand and for everything to just make sense. No, I needed everything to make sense. I needed it to make sense so badly because my baby could have died and I needed to protect him. But much of what I was reading felt like interpreting a foreign language I never knew existed. I didn’t know anyone personally I could reach out to for help with this. I felt alone in a world where food could harm my child.  I knew I didn’t get it in the moment, but tried to convince myself over and over I would get it soon. Hopefully… Eventually…

But then, just when I thought I experienced the worst of this new normal the next day came and it was basically mass hysteria in some of the food allergy groups. Complete chaos because a wheat milling company we’ll refer to as Big Wheat, had just issued a recall of their flour due to peanut contamination. Now Big Wheat isn’t a brand of flour any of us buy at the grocery store.  It is a company that supplies flour other food companies. And the problem here? Some law(s) prohibit the Food and Drug Administration from releasing certain information about food supply chains. Something about commercial confidentiality or some other BS. Instead, consumers had to contact Big Wheat directly to attempt to see if they could get any straight forward information about who they supply their flour to. The FDA wouldn’t—or couldn’t—disclose the companies Big Wheat sourced their flour to.

So, what does that mean?  It means bread, buns, crackers, cereal, breakfast bars, tortillas, cookies, bagels, donuts, chips etc…basically anything with wheat could be contaminated with peanuts. Anything.

Everything was suspect. Food that was deemed safe was now potentially deadly because the very first step in the supply chain had been, well, poisoned.

The even bigger issue that created such hysteria among the food allergy community was that Big Wheat did not name the companies they sourced their flour to. These companies now had to look into if they used this contaminated flour, what products it was used in and then needed to test those products, then issue recalls, etc…..

Are you still with me? Ok, good I hope…

At this point, in an attempt to confirm safe foods, some support groups were filled with members posting constantly about what companies they talked to and if that company would confirm if they sourced from Big Wheat or not. Newsflash—some wouldn’t.

Members were also posting about every single potential reaction people were experiencing—such as a random red mark on the skin or itchy throat—because feeding our children felt like an unavoidable game of Russian Roulette.  There was nothing but a constant vibe of fear and paranoia. We all went to the worst scenario possible. There were so many different threads going on that there was little to no organization of information. Some members and group admins certainly tried to calm the storm, but the fear and sense of urgency seemed to overshadow everything else. Especially for this newbie.

Many tossed all processed food away and severely limited what their family would eat during this time.  Many blacklisted certain companies at this point because of their lack of transparency.  This was all happening as I was trying to learn what my new normal would be, but I couldn’t. There was nothing normal on any level with what was happening. I didn’t have anything or anyone solid and calm to try and lean on or learn from at this point. I was treading water, but drowning was imminent as I couldn’t find a life jacket. What I did have, though, was a baby that I was afraid I was going to kill with food.  With f***ing food. And then I gave birth to another baby in the middle of this all.

This chaos lasted for months. Months. This is what I was thrust into. This is how I entered the food allergy world. Mass fear of food.  Mass distrust of companies. A type of anxiety I didn’t know I was capable of experiencing.

I would stare at Marshall every time he ate anything.  Just like many others, every red mark I thought was the start of another reaction.  Every cough I thought his throat was closing. I would look at his body/skin each time before he ate so I knew if anything new popped up during a snack or meal. Anywhere we went I pictured everything covered in peanut butter. No joke, I would look at people and imagined them dressed up like Mr. Peanut. It was like I was taunting myself. It sounds ridiculous, I know, however, we were thrust into this world at likely the worst imaginable time and apparently my imagination was a bit active.

During my 10-week maternity leave I was home alone with my new baby and I was obsessed with constantly checking the support groups out of fear I would miss some pertinent information. My phone constantly dinged with notifications each time someone posted—which was all day, every day for a while. I was trying to bond with my new baby and physically and mentally recover from child birth, while trying to not lose my other baby.

I. Was. Exhausted. Fortunately, Marshall was with my mom during the day while my husband was at work, so he wasn’t neglected during this time. Every time Manning was sleeping I was on my laptop researching and reading anything and everything about food allergies in general, as well as information about the recall. I almost never slept and barely made time to eat or take care of myself during this time. It sent me down a pretty deep, lonely spiral for a while and it wasn’t an easy thing to crawl out of. Quite simply, it absolutely sucked.

So there ya go. Part two of two in regards to my intense introduction to the food allergy world. A bit of a gut punch and for some reason I couldn’t quite work in any 90’s sitcom quotes into this one. There is a poor half-attempt at a Pretty Woman quote early on, but that’s it. Bonus points if you spotted it.

Until next time friends…

*Before anyone jumps on me I am in no way downplaying intolerance/sensitivities, but rather trying to convey how I felt in the moment and also get the point across that there is a lot of misunderstanding of what a life-threatening food allergy actually is.

**FYI, ‘PN/TN’ stands for peanut/tree nut and ‘ANA’ stands for anaphylaxis in these groups.

***FYI, ‘comfort level’ basically refers to what you are comfortable eating/feeding your child in regards to companies labeling practices and if an allergen is present in the manufacturing facilities or not. There is a wide range of comfort levels in the allergy community. This is something I will explain in more depth in future posts.