Benadryl, check. Epi pen, check. #Allergymom4Life

7

 

The dreaded RASH Test
The dreaded RAST skin Test

As a mom of a child with multiple food allergies (dairy/eggs/nuts/sesame (concentrated) and shrimp), this is my life whenever we leave the house. It wasn’t always this way…just since he turned about 6 months old. I feel ‘lucky’ because the worse my son has had as a reaction is terrible (like scratching to bleed on his face in his sleep) eczema.
“Wow, that must be tough.”
“I don’t know how you do it.”
These are probably the two most annoying comments I hear on a regular basis.keep calm
It IS tough, and I honestly don’t know how I do it every day, except that I have no choice. As a mom, I’m sure everyone has something(s) they never imagined they would have to deal with when they first hear the confirmation from their doctor, yup, you’re pregnant.  What I do know is I wouldn’t have been able to make it without the expertise of the amazing doctors we see, both local and not so local, western medicinal and our beloved homeopath.
I hope this post reaches at least one family who is in need of my lessons learned.

You GOT this...with a little help from your friends.
You GOT this…with a little help from your friends.

Lesson #1: Follow your gut as a mom. I learned this the hard way. Before my son was born, I researched a lot and decided I wanted to split the vaccines (not skip, split). My doctor at the time (new doctor now, same amazing practice) advised me not to bother and gave me that ‘I’m the professional. You’re a weirdo’ look. I’ve since learned my son’s body is super sensitive, and regardless of cost and inconvenience, I always split them now so he doesn’t get more than 2 vaccines at a time.
Lesson #2: Exhaust all avenues and don’t take ‘no’ for an answer. As a parent of a child with multiple food allergies, I cannot be afraid to advocate/speak up for my son. His life depends on it, sorry if I offend you…actually sorry I’m not sorry. Having a child with allergies must mean you constantly have to educate/explain your situation a lot. When my son was diagnosed with his allergies and needed Neonate formula, $50 a can, and my insurance refused to approve it, I spent HOURS…days…WEEKS on the phone with my healthcare advisor, local congressman, local CVS, and pediatrician. It took 6 weeks, but I did win.
Lesson #3: Find a friend who can really hear and support you. This is the most important. I was lucky. I teach and have many families who deal with food allergies, so they helped, a lot. These amazing people steered me to FARE (Food Allergy Research & Education), helped me when I struggled with epi pens costs, explained how to embrace life, not fear it, and taught me that this too shall pass. Most importantly, they always pick up the phone/return the emails/have coffee, because they had it so much worse. In the past five years, food allergy families have grown, and thus the demand, and supply, of safe foods. *see my list of links for safe foods.

#truth
#truth

Lesson #4: Forgive….yourself. This one is by far the toughest one for me. Unfortunately there is still no reason/explanation of what causes food allergies; no cure, no timeline for outgrowing them, hopefully. You can ‘do everything right’; eat peanuts while pregnant, don’t eat peanuts. Get vaccines, don’t get vaccines. Breast feed, formula feed. Upper, middle, or lower class. Race and ethnicity. Nothing really matters. Food allergies effect everyone.
And if you think, well not me. My kids are ‘normal’, you probably know someone close by who is navigating the dangers of safe eating…maybe they are the ones who come to your party with their own cooler of food and administer wipes to anyone who wants to touch them. Or maybe you’ve been asked to not feed your kid that peanut butter sandwich and milk.
Please understand we all just want to keep our kids safe the best way we know how.

*Resources:
Local:
Izzie B’s: great cupcakes, cookies, and now ‘chocolate’ covered bananas & whoopie pies! http://ibcakes.com/
Mrs. Greens: they carry tons of safe foods, especially gluten free/vegan products I’ve not been able to find elsewhere
Fairway: they carry ‘specialty’ products like these meatballs and sausage patties (just meat, no eggs or dairy).
Stop n Shop/ShopRite: I am so glad that the local stores have expanded their lines to include the Applegate product line (dairy/egg and some are gluten free), So Delicious coconut milk/yogurt (coconut is NOT a nut but you should check with a doctor to be sure it’s safe) products, and Vans waffles, which are also dairy & egg free.
Websites/Facebook/Pinterest support:

FARE: They are the hub of information and always where I go first to check if a food is safe. They have local chapters and meetings.  http://www.foodallergy.org/

Kids With Food Allergies: This website is a databank of recipes, forums, and general support. http://community.kidswithfoodallergies.org/pages/community

The Allergy Mom, Cooking for Stella, Nutrimom- Food Allergy Liaison are a few of the Facebook pages I follow for interesting cooking ideas, safe substitutions, and ways to mange life in the real world, like how to eat out or celebrate holidays in an inclusive manner.

love allergy mom

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Maria is a full-time mom, teacher, wife, daughter, and sister, who feels pulled in too many directions! Her older son Michael took over 24 hours to be born, and at six-months-old was diagnosed with allergies to dairy, eggs, nuts, soy, shrimp, and wheat…all after exclusively nursing because she was SO SURE that would help him be a healthy kid. Luckily at age 1, he began to outgrow some of his allergies. Fingers crossed the others will soon follow because that plus a husband who doesn’t eat any veggies and Maria always battling her weight makes for three meals to prepare every night. Luckily, Christopher, her younger son, is a cooperative eater! As someone who has always been committed to making positive change, Maria uses her privilege and position as an educator and mom to work toward a most anti-racisit, equitibile, and inclusive world. Recently, Maria has even started getting up at 5am to workout in her basement. (Thank you pandemic living!) She is addicted to reading chicklit on her Kindle app in the dark, most Trader Joe’s products, and watching TikToks.

7 COMMENTS

  1. It is great that we now know so much more about food allergies and sensitivities because we have more resources and support than ever. Feeling alone can be so difficult. Both my son and I have food allergies and have struggled to enjoy the things that other people take for granted. We have struggled even to get family members to understand how to cook for us. My fantasy is to walk into a restaurant and just order what sounds good on the menu, not choose between two options and then have to ask them to substitute something, just so that we can eat. It does taste a little bit better when you put in all that work to make a special treat. And at least we know that good and real food is fueling us, instead of junk. The upside, I guess 🙂

  2. This post couldn’t come at a better time. I have a suspicion that my son has an allergy and am about to get him tested. My naturopath recommended elimination first, but it is taking too long. Eliminating dairy helped, but didn’t completely solve the problem. Thanks for sharing. I have been gluten free for 5 years now and it is great that allergen free products are more available!

  3. Hi Maria,

    I have a one year old son who is allergic to dairy, egg, peanuts. Having a hard time and looking for more advice/support as I feel like my pediatrician is not the most helpful when it comes to helping with getting my son to eat food/drink (something other than bm) and I am concerned he might not be getting enough nutrients because his growth has declined over the past two doctor visits (not just slowed, but actually decreased on the growth chart). Any chance you can recommend a nutritionist or someone who can help find out if he is getting enough to help him grow? I have been breast feeding on an elimination diet 🙁

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