If you haven’t been brought up to speed yet, start with this story about my daughter Isla’s severe food allergies to… well… everything.
We got great news that Isla’s skin tests were negative back in June, and it’s now August. We were told to introduce these allergens at home because she likely wouldn’t react to what was once severe food allergies.
I had easily worked back in all of the random one-off non-severe reactive foods (lemon, spices, turmeric, banana, strawberries, etc) and Isla did great. No reaction at all. With the confidence of a negative skin test, encouragement from our allergist, and an epi-pen on hand, we were ready to try the big three that she was allergic to: eggs, dairy, and peanuts.
You can reduce the allergic quality of the proteins in egg and milk by baking them for an extended period of time so we started there. No reaction to baked milk or baked egg (muffins, cakes, cookies, etc). Great! Let’s move on to lightly baked milk and egg (pancakes, waffles, cheddar goldfish, etc). No reaction there! WOAH…. this is really working! Before we moved on with egg and dairy, let’s try peanut. We got 100% organic, pure peanut powder. We gave her the smallest bit mixed with applesauce. WHAT! This is PEANUT we are talking. My kid literally had trace amounts of this and we ended up in Urgent Care on prednisone… and she did not react this time, a short year later. We did this for a few days in a row, just a small amount.
Then we navigated back to increasing the egg and dairy. She still wasn’t reacting to the pancakes and goldfish we were feeding her so we tried to move on to the next phase, baked cheese on pizza, and parmesan cheese baked on a casserole. The smallest red dots for both, but nothing major. We thought, ok, minor redness… she has sensitive skin, we’ll try again tomorrow. Literally day 2 or 3 on both of the baked mozzarella on pizza and parmesan cheese, she got lots of red dots. More redness than I was comfortable with proceeding with. So in my head it was “ok she’s not quite ready for the cheese phase, let’s live in baked for a while.”
Ok let’s go back to peanut. Day 5 or so of ingesting the same amount of peanut, Isla started to scratch her tongue. My allergy mom friend said her son described trying his dairy allergen as “spicy” so maybe Isla thinks peanut is spicy (bizarre)! But I’ll keep going with peanut but I won’t up the dose. Maybe eventually it won’t be spicy.
Let me try egg. She was getting pancake which had egg that was only cooked for maybe 8 minutes tops? That’s essentially how long a straight scrambled egg is cooked. Let’s try scrambled eggs. Half a scrambled egg went in, minimal redness… hooray! We have officially overcome egg!
Not. An hour and a half later, vomit. The first time she vomited since accidentally ingesting allergens last year. Ugh. At this point, I emailed CHOP, described every scenario above. The thing they were most concerned about was not the egg vomit, but the itchy tongue from peanut. STOP TRYING PEANUT. Fuck. Fuck. Fuck.
Back to CHOP we went. Skin test revealed the following: Dairy – 0. Egg – 1 (down from a 2 in June which is still not considered an allergen because skin results 2 and less aren’t counted as positive results). Peanut – 9. A NINE. It was so big my husband thought it was the histamine control. She was a 0 for peanut in June. Essentially a 9 is where she was at last year, when trace amounts of peanut sent her to urgent care. The egg which she puked from had GONE DOWN since June. Are you baffled? Confused by the numbers? So are we. So is the doctor.
So where do I go from here. Some may say “hey move on to a new doctor” but like results are results no matter the doctor. I think the last thing I expected was the peanut to show positive because that was to be honest the thing she was least reactive to. I think I expected the results to all be 0 again and have to fight to argue that nah… my kid still can’t (or may never) be able to eat this crap without feeling shitty. But my doctor for the first time was candid and slowed her focus to side with me and help me figure out a plan. She gave her opinions yet offered little advice (realizing that my experiences are the most information I have at this point). I’m not mad at the doctor. I actually really like her. But we agreed, every kid is different.
Ready for my theory? Inflammation. Have you heard me use that word before? Of course you have. My gut tells me that the egg and/or dairy, AND/OR other inflammatory foods that we’ve reintroduced have triggered the severe peanut allergen to return. Our personal experiment for the next 6 months will be going back to clean eats for the kids. No more waffles, cheese, eggs, peanuts, goldfish, rogue breads or birthday cakes at parties. Limit gluten and other inflammatory foods, and see what happens at the next skin test. In a way maybe my kid just cracked the peanut allergen code for me by showing me her minor flare ups to egg and dairy are her triggers for the peanut reaction.
The worst thing about food allergies is not the food prep you have to do before you go anywhere, it’s not the sadness that your kid will miss out on whatever treats their friends are ingesting, it is 100% the fear that your child will accidentally ingest a trace amount of something that will send them into an emergency situation. That fear was still in me for the past three months, but it took a back seat. Long enough for us to book and enjoy a trip for the first time as a family, and enjoy meals at all kinds of restaurants (enjoying her non-allergy foods without fear of cross contamination).
We can easily convert back to our diets now of keeping these allergens out of the house, not forcing them on her, and letting her body heal. My breastfeeding days are quickly coming to an end, so that’s not on my side anymore, but we still have some other tools like probiotics and chiropractic we will continue with. If in 6 months, her skin tests are negative again, I am not sure what our plan will be. The confidence of KNOWING my kid is not flared up (non-reactive) to these three foods in trace amounts of cross contact is better than her having the ability to muddle through eating two of them with rashes and stomach aches and then potentially go to the ER for coming in contact with the third. Let’s face it, peanuts are moldy and one of the most genetically modified foods, and dairy is terrible for everyone (that’s not just an opinion that’s science, y’all, but certainly something I tell myself whenever I get sad about her not eating them).
Am I embarressed I pre-emptively posted a long story about being proud of myself and sticking to my mom-intuition and my kid overcame food allergies, and she didn’t? Well no. Because I was lead to believe she did. And this is a road I’ve never traveled before. I think I felt it was too good to be true then and was trying to convince myself of that. I’m going to continue to share this with you because it’s the easiest way to inform my family and friends of this crazy puzzle piece of a child we have, and hopefully find some other moms in similar situations.
I was crying in the car on the way home from CHOP, trying to hide it from Riley who picks up on everything… she goes “don’t cry mom, Isla will just grow out of it when she’s bigger.” I had my minute. I had a martini. I had a nap. I shared this part of my story which will continue and be another part of my parenting rollercoaster. I will wake up tomorrow, love my kids even harder, and not let this anxiety fill my bucket. Stress is a wicked monster that’s literally made me sick, and I refuse to live my life in fear. I have tools and knowledge to keep my kids safe and I will continue to protect them the best I can without letting my own health suffer.