It’s taken six months to finally accept that this chaotic chapter of parenting doesn’t have the typical story arc–that it may never come to an end. But hearing from others who’ve been through hell and back with their own families’ challenges reminds me how important it is to share our stories with each other.
We’re juggling a mix of overwhelming knowns and unknowns, like anyone with food allergies. In many ways we’re very lucky, but that doesn’t prevent the ever-present feeling of dread when anything made out of peanuts, eggs or milk are being consumed in the same room, smeared across hands and mouths, dropped on the floor, or left in the sink.
It started in March, when we took a terrifying trip to the ER covered in vomit, after our hive-riddled 9-month-old ate a minuscule amount of peanut powder a couple of hours earlier. Ironically, what was intended to be an “introduction” to prevent the allergy is exactly what made its presence known. We weren’t properly educated about introducing allergens when your child has moderate eczema, like many babies do, or that doing so in a doctor’s office was an option.
Haunted but stoic after spending our Friday night in the hospital, we armed ourselves with highly coveted Epi and AUVI-Q pens and slowly recovered from the emotional hangover of our baby’s anaphylactic episode. I flocked to Facebook groups looking for answers and camaraderie, like many food allergy moms do.
Thirty painstaking days later, we finally got in to see an allergist and got our first dose of the ambiguity that comes with diagnosing food allergies. Skin testing, which involves a grid of needle pricks on your baby’s tiny back–which you must hold flat for 15 minutes–revealed not just peanut, but milk, egg, and possibly cashew and pistachio. (This is a short list, compared to many other families.)
Follow-up blood tests could indicate the potential for tolerating an oral challenge of baked milk and egg, but bloodwork is even more rife with false positives than skin testing. Not to mention the trauma of trying to have blood drawn from the tiny, vanishing veins in your baby’s chubby little arm without success–which happened to us more times than I care to remember.
The prospect of transitioning to finger foods and finding a substitute for milk-filled sippy cups at 12 months felt overwhelming, so we turned to a pediatric gastroenterologist and nutritionist with mixed results. Under our allergists’ guidance, we continued introducing all the allergens that we tested negative for, one at a time, holding our breath with each new addition.
After learning about the nutritional deficiencies that milk-allergy infants and toddlers are susceptible to, we came up with a Google spreadsheet that left no stone unturned. We track every serving, every food group, every ounce of hypoallergenic formula and every critical nutrient’s daily recommended intake and tolerable upper limit.
The menu changes every week as our now 15-month-old (and I) get more adventurous. We’re still combining fruit, veggie, meat and grain purees with healthy fats like olive oil, batch-tested salmon, almond butter and coconut milk yogurt that don’t have “shared lines” with any of our other allergens–all which help make up for the surprising variety of essential vitamins and minerals (like iodine) that can only be found in cow’s milk.
Every day includes vitamin D and DHA drops, fortified baby oatmeal for breakfast, a potassium-rich banana, and calcium-enriched animal crackers (yep, the century-old classic) which we try, unsuccessfully, to keep off the floor. But we’re very proud that thanks to all the hard work, we get to squeeze a chubby toddler belly and thunder thighs.
When we finally regained enough confidence to leave the kids home for a quick overnight trip, it was a foreign experience to not constantly race through a mental checklist around the clock.
I still diligently wash my hands after eating anything made with mayonnaise or dairy products, and shudder at the idea of peanuts anywhere in the house. I’m still wary of high chairs in restaurants and swings in the park. We prepare three different dinners, which is another story in itself.
I can’t imagine sending our little guy away from our safeguarded cocoon out into the world, but seeing moms do it every day gives me courage.
As years are layered upon the hearty foundation we’ve established in this first six months, I know from experience it will get easier.