It finally caught up to us. Both of us. After ten years of dealing with multiple severe food allergies, my daughter and I are both mid-breakdown about right now.
It started six weeks ago when Jillian was having school lunch one day. There is one meal that her school makes that I have deemed safe for her — sliders (mini hamburgers). After four and a half years of exclusively eating packed lunches from home, Jillian practically begged me to see if there was a safe school lunch option for her to eat… even if it was just a couple times a year. So last year (when she was in fourth grade), I met with the cafeteria manager and posed the question. Could Jillian safely eat a school lunch? She amazingly and wonderfully provided me with an entire ingredients list for every single school lunch item they offer — main dishes, sides, desserts, you name it! We picked out one thing to start with (her favorite, hamburgers), and I double checked the ingredients on the boxes of buns at school, just to make sure. The next time sliders day came around on the menu, I asked the cafeteria staff the day before if they could make Jillian separate burgers. They happily obliged and made hers safely and separately from the rest of the burgers (which were near cheese), and they changed their gloves when it was time to serve her.
Jillian ate her first school lunch in October of her fourth grade year. She was ecstatic!
Sliders have come around on the school lunch menu about once a month since then, and Jillian always wants to eat them. Every time has gone off without a single hitch until six weeks ago. I had gone to have lunch with her the first half a dozen times or so that she ate school lunch, but she had recently asked if she could just sit with her friends – I didn’t need to go. Ahh, growing up! No worries, I live just minutes from the school, and I trust them completely, so I let her eat school lunch without me there. I still always made sure they knew a day ahead to make her a separate set of sliders, and I absolutely, completely trust the staff at the school. No doubt in my mind exists that they wouldn’t handle her food with the utmost extreme caution.
But this day, I got a call at lunchtime. Never a good sign. “Jillian’s throat is scratchy after a couple bites of her slider. She is worried and wants you to come get her.”
Damn. Not on slider day!
She’s had scratchy throat reactions before, and usually a dose of Zyrtec does the trick. Then we try and figure out what might have caused the reaction. Was there an ingredient we missed? Cross-contamination?
I headed to the school, highly disappointed that our trust had been broken and she would probably not be able to eat school lunch anymore — something that may seem like “no big deal” to most kids, but for a food allergy kid, it’s a taste of inclusion and normal-ness that they rarely get to feel.
Zyrtec dose taken, starting to feel better, we headed to the cafeteria to speak to the manager and ask what could have possibly gone wrong. Did they change buns without me knowing? Did someone forget to change gloves?
The answers were all “no.” Same buns — I checked. Two staff members confirmed the changing of gloves before handling Jillian’s food. What on earth could have caused the reaction?
Defeated. I felt completely defeated.
“Well,” I said, “there’s no way she can eat these again. If we don’t know what caused the reaction, it could happen again. We can’t trust this food anymore.”
For three days, I was completely disappointed. But then I got scared. And utterly confused. Because it happened again. I got the call at lunchtime that Jillian was having a bad scratchy throat reaction and needed me to come get her.
Only this time I knew what she was eating, and I knew it couldn’t possibly be an allergic reaction. She was eating leftover salmon (her second favorite food!) from dinner the previous night — and the night before that. I had saved her a chunk of it and packed it in her lunch myself. No mystery ingredients, no cross-contamination. And it was the only thing she had taken a bite of before she got the scratchy throat.
I wracked my brain for hours about this. WHAT could have caused her reaction? What in the world?!?!
Until it happened again the next day… to a different food. And then it happened the day after that. And the day after that. All scratchy throat reactions to foods she is most definitely not allergic to. She’d take a bite and have a reaction. She’d be scared and stop eating. The next day, she’d try that food again and have no problem at all, but she’d react to a completely different food that she’s not allergic to.
For three weeks this happened on a daily basis. Not to every food she ate, but at least once a day. It was enough to scare her into barely eating anything and completely frustrate the crap out of me!
“So, if something scratches my throat, am I just supposed to keep eating it?” she asked me one day.
HOW DO YOU ANSWER THAT?!?!
“Just eat what you’re comfortable with,” I ended up saying, knowing very well that was next to nothing at this point. She’s already almost the smallest kid in her class. She does not need to lose any weight. But how do you tell your severely allergic daughter to do the exact OPPOSITE of what you’ve always trained her to do?
At her prompting, I took her to see her allergist, but he didn’t know what to make of it, either. Maybe a throat sensitivity after a small virus she had a couple weeks ago? Maybe.
Only it didn’t go away. Everyday, different foods caused a frightening scratchy throat. She found that chugging a huge amount of water helped get her through it, and we eventually switched that up to chocolate almond milk, which seemed to help quicker. But carrying around gallons of water and/or non-dairy milk just so you can get through a meal hardly seemed like a great idea for the indefinite foreseeable future.
That’s when I found the Facebook post. The one that I genuinely thank God I saw. It came just a few weeks into our craziness of trying to figure this out — it could have lasted so much longer without me knowing.
Another food allergy mom posted in a group I’m part of about her daughter’s OIT (Oral Immunotherapy) and how much it has helped her, especially since her anxiety about her food allergies was so bad, it had started mimicking food allergy reactions.
Oh my God! Can this really happen???? Can this be what’s happening to Jillian????
I wrote her and asked her to please explain. More details needed! I’d never heard of this! No one has ever mentioned this, nor had I read about it anywhere before. And I’ve been well-immersed in the food allergy world for an entire DECADE now!
I heard from more people who said the same thing happened to them or their children.
One woman said she lost 60lbs because she eliminated everything but rice from her diet. Everything gave her a scratchy throat.
There is a link between food allergies and eating disorders.
How is this happening, but no one is talking about it?
Jillian had a recent appointment with an allergist at a special children’s hospital not far from where we live. I mentioned to her about the reactions — that are still happening daily — and asked if she knew about anxiety-induced reactions.
“Oh yeah, that happens. Uh huh.”
That was it. Seriously?!?! I’ve got a ten-year-old who is scared to eat, and all you’ve got for me is, “Uh huh.”
I said, “I’ve got her an appointment for therapy with a PhD. Is that the best solution? Psychotherapy?”
“Yeah. Therapy’s good.”
Ok, greeeeeeeat! Thanks a TON, lady!
So that’s where we are. Jillian has an appointment with a local doctor this afternoon. Miracle of all miracles, the original Facebook mom who posted about her daughter lives in a neighboring city, and we’re seeing the same doctor that got her daughter through her anxiety.
I’m optimistic. But I’m also realistic.
Her daughter is better now, much better. But she also went through OIT and can safely eat her allergen now. So I question how much the therapy did for her versus the OIT in curing her stress.
I’ve done a little research on OIT, and it looks promising. Very promising. But one thing at a time.
Severe food allergies are no joke, and the havoc they wreak in your life is sometimes unbearable.
Two weeks into Jillian’s scratchy throat reactions, I had my first anxiety attack. I didn’t know what the hell was going on. I thought I was having a heart attack! I went to the ER and got checked out — I came out with the diagnosis of a panic attack. Great.
I guess it’s about time. When you’re an allergy parent, you have to worry about all the normal crazy parent stuff, “What if my kid runs out on the road? What if she falls off her bike? What if he gets kidnapped?” But you add in an absurd amount of real terror when it comes to the most basic human activity: eating.
I guess after ten years of being scared Every. Single. Day. that Jillian was going to eat something that would immediately kill her, this pushed me right over the edge.
I have an appointment for my own therapy tomorrow. Gotta take care of yourself, too.
I will keep writing about our journey — both Jillian’s and my own — through handling the stress of food allergies, because it needs to be written about.
If you or your child are having anxiety-related issues, I sincerely urge you to get some help. We can handle a lot of things on our own — and we do — but sometimes we need outside help.
And that is totally OK!