A Letter From A First Generation Food Allergy Mama

JC Mama talks about Food Allergy
Written by Info

A Letter From A First Generation Food Allergy Mama

It is a vivid memory. Our older daughter Teisha’s (T) first reaction was at eight months. She only ate a crumb of homemade walnut brownie, following which she started crying profusely, turned a flustered red color, and presented with full-body hives. We brought her to the pediatrician, who treated her with antihistamines. We were lucky that day because timely intervention and care didn’t make her worse. She then reacted to a hazelnut cookie at 11 months- again, just a crumb! She vomited and had hives all over her reddened face followed by labored breathing. It was my first of many 911 calls to follow over the next few years. When she turned 1, we had a skin prick test done with a local allergist in NYC who confirmed her anaphylaxis to peanuts and tree nuts. The allergist asked us to completely avoid nuts around her.

That was the beginning of an anxious and arduous journey. T also had company along the way – my younger daughter Anaya (A). A had her first reaction at seven months when she ate semolina (cream of wheat) porridge with butter and a few drops of cow milk.  Her lips and eyes were swollen. A bit more experienced this time, we administered antihistamines and immediately got her tested. Her anaphylaxis to dairy was confirmed through a skin test. Since then, she has had a long history of reactions ranging from face swelling, full body hives, unstoppable coughing, asthma attacks, breathing constraints, and cross-contamination reactions. She contacts reactive to dairy, and the unfortunate truth about dairy is that it appears as an active ingredient in almost everything, especially school lunches, popular snacks, and party food – think cake, cookies, ice cream, pizza!

Being a mother to two healthy children with entirely different food allergies left me feeling helpless, anxious, and dejected. I constantly asked myself, “Why my babies” or “What did I do wrong”?  I felt alone even amongst family and friends. People judged me for things I did or did not do, things I may have done more or less than required.
“Oh, maybe you didn’t consume enough dairy or consumed too many nuts”
“You didn’t expose them to allergens early enough?”
“You were too careful or too lax”. It was always too this or too that, and somehow never enough.

I was in a dark place with self-doubt, blame game, and guilt. Initial years were riddled with anxiety as I watched my children like a hawk at mealtimes. My near and dear ones would upset me because of their lack of awareness and accommodation of our situation. Consequently, I also burdened myself with a feeling of upsetting everyone around me with my possible lack of flexibility, constant reminders of the allergy, and endless and extreme caution. There came a time when we would completely avoid social events, playdates, parties, dinners, and extracurriculars. In short, anything fun because it most certainly meant encountering allergens.

We made other lifestyle changes – no eating at restaurants, carrying homemade meals everywhere, altering our shopping habits to avoid allergen-packed foods, and changing our diet.  We spent additional time at grocery stores extensively reading labels and then double-checking and triple-checking ingredients. We chose only those schools and camps that were aware and accommodating of allergies, even if that meant paying more than a regular option. We avoided traveling, especially internationally, to ensure we are never too far from familiar, reliable, and trustworthy care if and when we need it.

I kept looking for answers – Why does this happen? What is the treatment? Is there a treatment? Is this lifelong? I googled like a maniac, approaching allergists and pulmonologists in NJ and NY. Every time we found a new doctor, my daughters were pricked and probed, and every single one confirmed the same diagnosis and lack of treatment options. All we got was a doctor’s note, prescriptions for EpiPens, and some antihistamines. Not to mention a thumbs up and peace out sign, hoping we would not encounter allergens again. Except, it was always the opposite of that.  The allergens seemed to be omnipresent in everything.

And then hope showed up as unexpected as the allergies. We went to San Diego in the spring of 2019, and while we were waiting in the queue at San Diego Zoo panda exhibit, we overheard the family standing in line behind us discussing lunch options at the zoo. We got chatting with them about food allergies. They told us about their friends from New Jersey whose kids had overcome multiple food allergies through treatment in a California-based pediatric allergy facility. They texted their friend and shared the contact information of the SoCal Food Allergy Institute. Honestly back then, it felt too good to be true. I mean could it really work? We live in downtown Jersey City and traveling cross country for regular treatments seemed far-fetched. How seriously would you take a casual recommendation from a stranger in a zoo while waiting to see pandas? Like that, I sat over this information for a few months, which I hold as one of my biggest regrets.

We joined the SoCal waitlist in August 2019 at the 2470th position in line. They say there’s no such thing as a better time, and this couldn’t be truer. After 9 months, we scheduled our first appointment. This was in June 2020. SoCal accepted my daughters into their program in the middle of a worldwide lockdown. After 3 months in quarantine and taking utmost social distancing measures, we flew to the West Coast amidst a raging pandemic.

We started with TIP or Tolerance Induction Program. It entails treating the immune system of food allergy patients by gradually introducing allergens and building tolerance with the support of recommended safe (non-allergic) foods in related families. If you want more details about this program, please click here; https://socalfoodallergy.org/our-program/.

I call myself a “first generation food allergy mama.” Neither my husband nor I nor anyone in our entire genome connection or friends circle has food allergies.  My daughters – T is now 8, and A is almost 6- are wonderful, smart, kind, active, and ambitious girls. I have been learning how to accept, adapt and thrive as a food allergy parent. I am learning through experience, making mistakes, experimenting, sometimes failing, and other times succeeding.

My daughters have been in treatment for 18 months. T can now eat a whole bunch of nuts, something she never had before, in prescribed proportions. She is still in active treatment and has cleared cross-contamination risk. It has taken a lot of weight off our shoulders. A had a setback earlier this year during treatment but is back on track. She is working towards the goal of food freedom, slowly but surely.

At this time, I feel my daughters are living their best allergy-safe life. They attend all events they are invited to, considering there are plenty in a vibrant city like Jersey City. They also actively participate in all school and community events. They continue to do well at extracurricular activities – dance, swimming, soccer, and tennis, to name a few. I can’t wait for the day when they will have complete and unconditional freedom of choice about food.

Through our journey, I have discovered that we are certainly not alone and that there is an incredible support system around us. Our friends and family have come a long way from unawareness about food anaphylaxis to supporting us and rooting for us to tide over. Something I shall forever be grateful for.
I also connected with many supportive food allergy families in Jersey City and across the country. It is truly a village around us, and I hope to be there for anyone who may be struggling with this. Food allergies do not have to be inhibiting and excluded. If you are going through a similar experience, I am here to offer you my support and look forward to connecting with you. If you do not have food allergies and just happen to know someone who does, I humbly request you be more accepting of them.

Every day I strive to give our daughters their best allergy-safe life while raising them to be the warriors they were born to be. I believe in the power of prayer, science, and hope. It is still a relentless quest to find food and freedom, but I know that we are getting there.

– Anitha Charoth,
First-Gen-Food-Allergy Mom, Jersey City Resident

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