So you've just discovered your child has food allergies. What now?
For starters, take a deep breath. For real, right now, deeeeeeeeep breath....and exhale. Know you're not alone.
A little background on our discovery, full detailed story here in this blog post, our daughters first anaphylactic reaction was at 8months old to dairy formula. She'd had what I thought was minor irritation prior (example in picture above...I know, I know...hindsight that doesn't look minor...hashtag first time mom) to random fruits and veggies and likely dairy through my breastmilk, but I'd never even considered actual food allergies until her big reaction. She had horrible eczema which I also didn't know could be connected to food allergies. Our actual diagnosis came about 4 months later when we went in for testing and discovered she was in fact allergic to cows milk (casein) in addition to peanut, pecan, walnut, and egg. I felt like our life had been turned upside down. Some of you are having similar experience with and infant diagnosis, and others of you are experiencing this for the first time with an older child. Wherever you are, I don't promise to have all the answers, but I do have a few pointers that I hope will help get you aimed in the right direction!
Step One: Elimination, Epi, Allergist If your child has just had their first reaction, step one is to eliminate the suspected food allergen from their diets. Check labels, go back and read the labels of food you've been giving them just in case they contain the allergen and you're unaware. I remember a year after Ansleigh's diagnosis, realizing a baked Gerber snack I gave her often early on contained milk, which likely was the culprit for her horrible eczema and the mini reactions I mentioned earlier. Poor thing was probably miserable and I didn't even know! Next, get your epinephrine! If your child had an episode that got them to the ER, you should have left with a prescription for an epinephrine auto-injector, get that prescription filled! If you didn't get one, find an allergist and upon getting an appt, ask if you can have a prescription sent to your pharmacist in the mean time. Read up on and know the signs of anaphylaxis, write out an allergy action plan (forms can be found on FARE's website). Once you have them, always carry two. There are some reactions that require a second dose before emergency crews can arrive...always carry both injectors! With that, thirdly, get to an allergist! Ask around for good allergists in your community, Facebook is an easy place to search for an allergy parent group in your area for good recommendations based on personal experiences. I have a theory that our first allergist can be a rough experience because we don't know what we're even needing, so if you don't feel heard and understood and educated, find a new allergist! Advocate for your child's life and your best ability to be educated for them! Going in to the allergist, you want to ask ahead to make sure they do BOTH skin and blood component testing...neither of these on their own are definitively conclusive, you want the results from each to help confirm the diagnosis. If the allergist only does one, I'd advise you find someone else.
Step Two: Find Your Food In the very beginning, you can become so overwhelmed with dietary changes, especially if your allergens go beyond nuts! Social media is a great place for recommendations, but it can also be an overload. In the early stages, know that simplicity is absolutely acceptable. We struggle with wanting our kids to have a great palate like great cultured people have, but mama, hear me when I say the same sandwich and fruit every day is just fine while you figure this out! Don't go spend all your money on specialty allergen free products, especially when you don't even know if your child will like it. Our grocery bill went up by about $400-we-didn't-have average each month trying to find substitutes and buying the fancier products. It's unnecessary. So, find your food. If your child is still under age 2, and you have a dairy allergy, find your milk substitute (for what it's worth, we used hemp milk ages 1-2, flax milk and coconut milks ages 2-3, helped reduce costs as hemp was most expensive). Fruits and veggies naturally provide a great variety all their own. Find your one safe bread for toast, sandwiches, etc. Find a safe lunch meat and if needed a nut butter alternative. Find your top 5 go to shelf stable snack foods (think cereal, crackers, pretzels, breakfast bars), take a day to write out 5 safe lunches and 5 safe dinners, all ingredients/specific brands written down. Keep this list on your refrigerator for reference for anyone taking care of your child and to give your brain a safe reliable space! (***note, check labels every time you buy a product, companies can change ingredients without any warning...I know, I'm sorry, one more thing to remember, it eventually just becomes habit!!) Find one or two safe desserts/treats that are easy to grab when you know there's a celebration. If you can handle it, find a recipe and make a dozen safe cupcakes, freeze them. Keep a safe frosting on hand (or make your own easily out of powdered sugar, vanilla, and water) and you know you'll always have a cupcake on hand for birthday parties! This list is clearly not at all conclusive for all of life, but in the beginning, find these things, write them down, and don't feel you have to expand until you're more settled and have more clear results from allergy testing. I can't express how often Ansleigh ate rice, beans, and avocado in her early days just because I knew it was safe, easy, and covered protein, fat and carb...she is currently thriving people.
Step Three: Separate Non-Safe Foods This is a step that is controversial in the food allergy community. For some, completely eliminating the allergens from the household is the best option. This is not an option for us, as I've learned recent studies show preventing food allergies in babies actually involves introducing Top 8 foods early, as in 4-6months old early. While my older two have food allergies, my youngest and hopefully the one in my belly, do not. So we keep the allergens in our home to give to them routinely, and meticulously, involving thorough cleaning afterward and no kisses for big sister. That being said, I do have it separated! I know the top shelf of my refrigerator is the specific place for foods that are not safe for Ansleigh. Same in our pantry, the top shelf contains her allergens. She knows not to touch it, and we know not to give it. It's an easy declaration for caretakers...no top shelf!! This is a personal decision, but know it can absolutely be safely done!
Step Four: Get Educated This is my heart, mamas! There is a TON of scary information out there, some true, some not so much. Find your reliable resources, through your allergist, through FARE, through local experienced food allergy parents/sufferers. Take the time to truly research and dig. Find actual statistics and not stand alone experiences. While these can absolutely be helpful, and something to be mindful of, I dream of parents that are confident because they're educated, they've prepared and prevented their best, and move forward instilling life and capability into their children as they grow. We release them into the world once they're grown...I don't know about you but I want my food allergy babies to be confident and fearless, not because there's no threat, but because we've done the best we can to know all we can know, and prevent all we can prevent. We're not in control of every circumstance and outcome, but we are in control of what traits we pass on to our kids...and I refuse to let my fear, worry and anxiety drive the trajectory of their lives. That being said, it's taken years to know what I know and prevent what I prevent. This is a lifelong journey. Research and evidence based treatment is evolving all the time, it takes dedication to stay current, you can do this! Start a list of things you want to learn based on category (ex: safe foods, reactions, signs of anaphylaxis, treatment options, misconceptions, etc) and then begin the search, one tiny bite at a time. A truly great and reliable starting point is FARE, Food Allergy Research and Education. Linked here is their Food Allergy 101 page, an easy introduction!
Step Five: Educate Others It helps so much that as you find your information, educate everyone! The whole world! Okay, I know you don't have time for that...but it's very important to educate those that will be caring for your child. (There are so many quirky things people in general don't know...an example, wiping down surfaces: soap and water is the most effective at removing food proteins, not lysol or sanitizing wipes. Same with hands, soap and water, not hand sanitizer.) Spouse, grandparents, babysitters, teachers, daycare employees, etc. Having your allergy action plan printed out and on your fridge is great for caretakers. Eventually I'll let you know great ideas for an allergy notebook/binder. But for starters, the basics are your allergy action plan and safe foods list. If your child is school age, and attending a public or somewhat federally funded private school, you need to meet with admin and create a 504 Plan.
Step Six: Breath, again. Like I said, this list is not at all exhaustive. There is SO MUCH MORE. But I hope this gives you a to do list that is attainable, solid footing for the road ahead. But take a breath. Remember self care in all of this. There is no shame in counseling for yourself, early on there is a grief and fear that seems to settle over you, as you realize every meal time can potentially be dangerous. Decide now that you are going to aim for freedom from fear, for your health and the sake of your kiddos health too. The journey ahead is long, but the resources and will power are there for it to be joyful and full of strength. Here's to many days of a prepared and peaceful mind!