I walked a year and a half in hell and then had the best day ever.
My second child, Isla, was far different than my first child. Isla was such an easy birth, the best baby, sleeping through the night at 6 weeks old, could take her anywhere, and was so calm. I joked that it was too easy to take care of two kids. After dealing with the drama of my first born, and then a difficult first year of follow ups with her, I was waiting for the other shoe to drop.
Of course, it did. Around 6 months Isla developed severe eczema. She stopped sleeping through the night and was getting up multiple times a night. The pediatrician warned that as we began introducing solids after 6 months, that we should try egg and peanut first, because they could be commonly associated with eczema. After starting a few veggies, we tried peanut. No reaction the first time… the second time, a complete break out of hives. Luckily though, nothing more, just hives. This was crazy… we had no family history and no instance of my first born, Riley, ever having any kind of eczema or allergies. A few days later we tried egg. No reaction. We gave egg again over the course of 5 days. The FIFTH day of egg trial she developed an awful reaction of hives, vomiting, and runny nose sent us on our first trip to urgent care.
We scheduled an appointment with CHOP allergy doctors. Soon after, I am now decked out with epi-pens at an arms reach, and realized that her risk for severe anaphylactic reaction allergens were more than just egg and peanut. Isla’s allergies also included dairy (milk, butter, cheese, etc), turmeric (pickles, rolls, crackers, jelly beans, relish, mustard, etc), and sensitivities to chili powder, kidney beans, cinnamon, strawberries, bananas, papaya, tomatoes (including ketchup and sauce), lemon, and she had reactions to preservatives in lunch meats, hot dogs, icing, and the like.
We took the advice of the allergist for a while and tried introducing baked dairy, baked egg, and we even took part in a recommended food challenge (which was an awful experience). Isla was barely a year old at this point and was visibly reactive to EVERYTHING. The allergist also suggested that I still continue to eat these foods because I was breastfeeding. Every time she’d nurse after I had something she was allergic to, her skin would flare up with eczema.
I think the very worst of her allergies was a meal out at a Vietnamese restaurant. Isla was 10 months old, and we packed her “Isla-friendly” foods so we didn’t have to worry about cross-contamination. Just kidding though, because after 5 minutes of being in the restaurant, Isla suffered a severe reaction from simply breathing in peanut and peanut oil that was in the air. After a very scary trip to urgent care, which included lots of prednisone, benedryl, and tears from mom we had to make a change.
At this point, I had to follow my gut. This wasn’t getting easier. It was getting worse. We went against the suggestion of our well-educated allergist who is doing ground-breaking allergy research at CHOP and did what we felt was right. The Goal: To completely eliminate the inflammation in my child.
The sensitivities were enough to have us avoid those foods completely. We simply stopped trying new foods. We didn’t dare venture to tree nuts because the proteins were usually common with peanuts. We took the foods completely out of the house, and completely out of my diet because I was nursing Isla. We had a dairy, egg, peanut, tree nut, turmeric free party for Isla’s first birthday. Thanksgiving required me to do all of the cooking so I didn’t feel uncomfortable letting Isla try anything. Do you know how hard it is to make green bean casserole with no cream of mushroom soup? And NO BUTTER on my Turkey??? Not to mention I was catering to my gluten-sensitive sister-in-law on Thanksgiving so it was all gluten-free too. Yep, no gluten in our stuffing.
At this point I am sure you are like, what the hell do you eat? Well.. Isla never had a reaction to black beans, chickpeas, meats, rice, fish, some low-histamine fruits and veggies. We became the definition of “clean eats.”
If you are an allergy parent, you can relate to the following thoughts that I had CONSTANTLY:
- I don’t want to leave the house.
- I am hesitating to kiss my kid on the lips and face because I have to first think about what it is I ate. No one should have to hesitate to kiss their kid.
- Is that a chestnut tree? Oh no is that a chestnut in the sandbox? Oh my god don’t put that in your mouth, it’s literally a tree nut.
- Did your son just eat peanut butter? He’s trying to help my daughter up the stairs on the playground. Did he wash his hands?
- Is that a cheerio under your couch? Is it a honey nut cheerio? Do honey nut cheerios have nuts in them? What if Isla accidentally puts it in her mouth because she thinks its a regular cheerio? Is there a cheesy dorito under your couch? Because she’s playing with a car on the floor and it just rolled under your couch.
- I can’t fly on a plane. What if someone on board opens up peanuts? She reacts to peanuts being circulated in the air. We can’t travel. Will we ever travel again? We’re done traveling.
- Your dog is so sweet. Aww he is so sweet to lick Isla’s face! Oh wait, did he just have a dog treat? Was their peanut in it? Turmeric?
- Did your coffee have milk in it? Don’t kiss Isla’s cheek, she’s going to react.
- Did YOU wash your hands before you touched her? What did you eat today?
- She’s going to have to pack her own food for every birthday party. She can’t have pizza. She can’t have birthday cake. She can’t have traditional snacks like Goldfish and yogurt and ice cream. This is going to take a lot of planning. She will be different. Will she be bullied? Will she miss out? Will she feel sad?
I lived a whole year like this.
At about 18 months, I made more changes:
- I took her to our chiropractor every three weeks.
- We didn’t travel.
- We didn’t go out to eat for fear of cross-contamination on the table or high-chair.
- I made every single meal for her and didn’t let anyone else feed her.
- I packed every single treat for every single wonderful birthday party we attended.
- I avoided high-histamine food.
- We continued to eat clean, organic, non-gmo as best as we could.
- I started her on hypoallergenic probiotics.
- I only put her in organic cotton clothes.
- I bought her a Himalayan salt lamp for her room.
- I installed HEPA air filters.
- I installed a whole home water filtration system to optimize her body’s ability to heal and reduce the amount of toxins she was exposed to.
- I read books by Amy Myers, met Kristen Coffield who is all about reducing inflammation, talked a lot with my sister-in-law who struggles with food sensitivities, and shared my story with anyone I could. This also helped raise awareness of people who were around Isla, in turn keeping her safe.
- I also lived a year and a half not only avoiding her allergens for her, but also for me. I used to LOVE cheese, but I completely cut it out of my diet because I felt like I had to do it.
- Most importantly, I continued to breastfeed my allergy child. At a year and a half she was still nursing 3-4 times a day (and still in the middle of the night). And by about 22 months she was only nursing 1-2 times a day.
Can you guess what happened next?
Almost 1 year to the day of her near-anaphylactic trip to urgent care for breathing in peanuts, we had a regular follow up allergist appointment. Isla is almost two. She skin tested negative for everything. SHE TESTED NEGATIVE… for peanut, tree nut, dairy, and egg. She is no longer at risk for anaphylaxis and we are to start introducing these foods when we feel comfortable. We are no longer granted an epipen prescription. She’s finally been sleeping through the night after a year and a half of being so unsettled. And weirdly, she seems less rambunctious and destructive (no idea if there is a correlation here). This disabling issue is no longer a cornerstone in our life. This changes everything.
Why am I writing this? Because this is the article of hope I was looking for one year ago. My motherly instinct told me that the doctor’s orders weren’t going to work for my allergy kid. I did my own research. Had a few great conversations with very knowledgeable people, and did what I felt was right.
Will this work for your kid? Maybe. Maybe not. Who the hell really knows. Of course, I could have done nothing. Or I could have continued to follow my doctor’s recommendations to force feed the allergens to my kid. Maybe we’d still be terrified to leave the house? Or maybe she would have been “cured” no matter what, because that’s just how allergies are? Either way, maybe the “Isla-friendly plan” will be something you’d want to try, because maybe you’ve tried everything else. Or maybe you want a holistic way to try to cure allergies.
And of course I can’t end this on a completely high note. Only 10-20% of kids with severe peanut allergies grow out of them. Be aware of kiddos and parents everywhere who may be struggling through this. Wash your kids’ hands before you let them play on a playground after they eat an innocent Uncrustable. Be aware of classmate’s food allergies, and please don’t think of them as a burden… your allergy-friendly snack is just keeping them safe, and letting their parents breathe a much needed sigh of relief that their kid is going to be ok that day.
And lastly, pray, wishbone, hope, or cross all your fingers that our dear friends Gregory and Vincent outgrow their life-threatening food allergies. I believe, and can report, miracles do happen.