Gerardo: On behalf of the Elijah-Alavi Foundation, thank you for extending your time, to talk with us. My name is Gerardo and I will be conducting your interview. Can you share some details about your family?
Swapnil: We have 2 daughters. Our oldest is going to be five in a month. She is the one that has presented with multiple food allergies. Her name is Anya and we have a one year old, name Amani. With Amani, luckily so far it’s completely different. We can go to a friend’s house and she’s in her Bjorn and we can give her a little bit of anything; it’s not a problem. It is so much different than what we went through with Anya. It’s relieving in that sense that you forget what a normal situation would look like, where you don’t have to worry about any of that stuff. The more we’ve read the more we realize that your gut bacteria has a lot to do with it. What we have found, was that if you had some antibiotics when you were younger it weans out some of the good gut bacteria which makes you susceptible to some of the food allergies when you get older. Anya was under 4 pounds when she was born. She had to have a spinal tap to rule out meningitis and she had to have antibiotics. She was in the NICU for about a week and then she got an ear infection. We believe that this all had to do with the fact that she developed food allergies because we do not have a lot of food allergies in our family.
Gerardo: What are some of the allergies that Anya has presented with?
Swapnil: She actually ended up developing more allergies. For example, she was fine with green peas and then developed an allergy to green peas six months after. She’s allergic to other legumes and lentils. She’s not allergic to peanuts or dairy, which are more common allergies. She is allergic to tree nuts legumes eggs and sesame. We are cautious in our house and we no longer eat things that we used to eat such as walnuts in pesto, or pancakes, or waffles. We don’t even have these things in the house anymore because she is even sensitive to contact reactions, so it’s best to just not have it in the house. She’s just now starting to tolerate eggs, which you might be aware, is one of the more common allergies that children tend to grow out of. We are hoping that her treatment helps her sensitivity to some allergens through gradual exposure. Her main allergies are walnuts pistachios pecans cashews eggs sesame legumes green peas. Beans. She is so sensitive to beans that if I eat something such as an enchilada and then kiss her on the cheek, she’ll develop hives.
Gerardo: That is extremely sensitive.
Swapnil: We don’t have her eat out at restaurants. We bring her food everywhere we go. She’s OK with almond and coconut, which are two things that we’ve done some food challenges with. When something is made in a facility containing tree nuts, it’s not good for her. We avoid those products. For example, quinoa was fine for her and then she started reacting to the quinoa. We noticed is that that label changed to know that it was made in the facility that contain tree nuts.
Gerardo: This reiterates the importance of reading labels carefully.
Swapnil: Some companies make it a lot easier such as Trader Joe’s, their labels are pretty comprehensive. There’s a SKU they can call number and the other person the other and can explain it simply. The idea is use technology to make things simpler and easier for people and give people peace of mind with their choice. It is a product that is clear for my kids to eat then I’m happy to buy your product.
Gerardo: Great idea. Using the technology and labeling that is available to us to make the ingredients and allergens transparent for consumers. I wanted to ask you a little bit about Anya’s reactions. Are there any other ailments that affects her?
Swapnil: The way we found out was around her first birthday. We always knew something was off especially my wife was very perceptive, around six months when she started eating salads, there was a lot of eczema and redness. Around her first birthday, she had an allergic reaction where she had hives all over her body and vomiting. At that time, we didn’t know it was allergies per say; we just knew something was wrong. We did not have Epipen at home. We gave her Benadryl, and we were lucky. He had an allergy appointment two weeks later and it confirmed that she had all these allergies. We were much more alert after then. At day care, there was hummus which contains concentrated sesame. My wife picked her up that day and she was rubbing her eyes, which were swelling up. The other kids were eating the hummus. My wife raced to the emergency room where they gave her some steroids to calm the reaction.
Gerardo: Can you tell us about your experience with treatment?
Swapnil: She is on SLIT (sublingual immunotherapy )drops. She is on environmental drops as well as food drops, where we have been increasing the dose of allergens almost to maintenance. Our plan is to add OIT in addition to the SLIT. Our preference is low (dose) and slow. we don’t care if it takes a little longer, we just don’t want to overwhelm her body. We see two doctors; one is local and the other is 2 and a half hours away.
Gerardo: Can you explain a little bit about SLIT and what that entails?
Swapnil: SLIT is basically liquid drops. The cells in your cheeks absorb the allergens versus your throat and down. The idea is to train your body to be ok with the allergen. The doses your steadily increased slowly every three months. Overtime, you reset the body’s reaction to that allergen.
Gerardo: Have you noticed a difference in sensitivity since starting SLIT?
Swapnil: We won’t really know until we do a food challenge. We do annual blood work. At some point we will look at the numbers to determine whether to do a food challenge at that point. The exposure with SLIT is very low compared to OIT.
Gerardo: Thank you for that explanation. How has your family managed during COVID?
Swapnil: One of the silver linings of Covid, is that she’s been home for a year and a half. The last year and a half, we both been working from home.Anya’s been homeschooling while we had Imani growing up. There’s no concern, and we have been reaction free. The hard part of this is knowing that we can’t keep her in this bubble (of safety) for life.
Gerardo: How do you navigate family, school, social situations where there can be potential exposure?
Swapnil: For us, the past year and half has been much easier because due to the pandemic, we've opted to keep our daughter home from daycare. With that being the case, we haven't had to worry about accidental exposures or the like. In August, we'll be on alert once again as she'll be going to kindergarten. Having read about a lot of the challenges parents have with public schools and the inconsistencies with which allergy kids are looked after, we made a personal choice to send her to a private school that is much more aware of food allergies. Most importantly, the school is already nut free. They don't even let products that are manufactured in a facility with tree nuts into the school. And the school nurse has proactively set up time with my wife to learn about our daughter's food allergies so that they can plan to safely care for her. The extra steps they take help minimize the anxiety that we have as allergy parents. For family and social situations, my wife is amazing about making sure that we always have safe foods to bring along for Anya. On trips to visit family or friends, to restaurants, for birthday parties. It's certainly a lot of work (thinking about what to make, making it all, remembering to bring everything, etc.), but the risk associated with cross-contamination isn’t worth taking. And by bringing along foods that are comparable to what others, our daughter doesn't have to feel like she's missing out.
Gerardo: I wanted to ask you a little bit about your family’s journey with advocacy. Tell us a little bit about “Epi, You’re my best friend “?
Swapnil: My wife is very proactive and preps accordingly for Anya to keep her safe and feel included. I come from an advertising background. I want to keep Anya safe, while simultaneously not being fearful if this thing that can be frightening (Epipen) for adults and children alike. I started to think well what are we do? We are not the only ones that are struggling with making kids comfortable with something that can be a life-saving tool. We made the main character, Eli, in the book friendly and inviting. Anya loves it. One of the pages in the book has Epi in a bib at a holiday gathering. This is one of Anya’s favorite pages. This is fun way for her to become comfortable. She takes the book with her where she goes. She is showing Imani. It becomes just like a normal thing. One family reached out to us and said this has change the way that we talk about epi-pen in our household. To talk about Epi as a friend, starts from a place of comfort.
Gerardo: I love this idea. It reframes something that might be scary for kids and parents as a life saving friend and drilling in that Epi goes everywhere with you.
Swapnil: Yes, and where is it that you might remember that Epi needs to come with you? On your way out the door. We made, stickers and door hangers as reminders. Anya will say, “Don’t forget Epi”! It is media placement to drive the right behavior.
Gerardo: Amazing. It’s a way to call attention and create awareness.
Swapnil: We have found great resources online and community support. We got over the hump of being new allergy parents through the support we found online. It helps you to take what information that you need and personalize it for your family.
Swapnil: Anya wants to say hello.
Anya joins in the interview.
Anya: Hi
Gerardo: How are you?
Anya: Fine
Gerardo: What are you up to today?
Anya: I’m doing homeschool.
Gerardo: I was talking to dad about your allergies and Epi.
Anya: (Holds up the Epi Book) The Epi book. I really like the Epi Book. It’s funny.
Swapnil: Mr. Gerardo helps families with allergies.
Anya: That’s nice.
Gerardo: It is nice. It makes me feel happy to help families with allergies.
Swapnil: Can you tell Mr. Gerardo, If you could tell another kid about some thing with allergies what would you tell them?
Anya: We can order the EpiPen, and you can just bring your EpiPen everywhere you go. We bring Epi, everywhere we go!
Gerardo: Nice! Wonderful, fantastic advice!
Before we go, Swapnil, are there any parting words of wisdom you would like to share with parents with children with severe food allergies and parents without children with food allergies and or asthma?
Swapnil: You are not alone. Go to a specialist, general medical providers may not be equipped. Create a plan that is right for you and your family.
If you like to find out more about "Epi Your My Best Friend" Book please go to https://www.swapniliscafe.com
