Latitude Patient Voices

This blog gives voice to the many families who have sought care from Latitude Food Allergy Care, their experiences and how their lives have been impacted.


Jacqueline's Food Allergy Journey

July 17, 2020

Jacqueline delivering foodJacqueline is a rising high school sophomore with multiple food allergies including eggs, dairy, tree nuts, and peanut. She is a member of the FARE Teen Advisory Group and is passionate about volunteering at local food banks and providing allergy-friendly food to families in need. Jacqueline shares her journey of participation in a clinical trial, multiple food challenges to clarify her diagnosis, and advocacy for herself and other families impacted by food allergies. 

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1. Why did you initially decide to come to Latitude?

My mother first heard about Latitude from Julie Bitler, one of the co-founders. She and Julie initially met many years ago when my older brother and Julie’s daughter were in preschool together. They both had kids with food allergies and they bonded over shared experiences with food allergies. 

I previously participated in a clinical trial at the Sean N. Parker Center for Allergy and Asthma Research at Stanford University for multi allergen oral immunotherapy with Xolair, and was treated for dairy, egg, cashews and walnuts. After that experience, I decided to evaluate all of my food allergies at Latitude, because I wanted a wider variety of foods to eat from. Since beginning my care at Latitude, I have already passed oral food challenges for baked egg and baked milk. I still have a few more food challenges to do for peanut, hazelnut, macadamia nut, scrambled egg, uncooked milk (I want to eat pizza!) and then we will decide if I might need to go through another stage of oral immunotherapy for additional foods. 

2. What has your experience at Latitude been like?

Latitude is great. I love it. It feels homey and comfortable. Everyone is super nice and it is great. I’ve been able to feel very comfortable there during my oral food challenges. 

Jacqueline baking3. How have your food challenges at Latitude impacted your family?

I used to make allergy-friendly baked goods just for myself. Now that I can eat baked egg and baked milk, I’m now able to share baked goods that I make. I can eat real pastries and brownies and taste the real thing!

4. Can you share your unique experience volunteering with the FARE Teen Advisory Group and how you are passionate about helping other food allergy families? 

In February, I applied to be in the FARE Teen advisory group — a group of teens around the country working on projects to raise awareness of food allergies and to give resources to help people with food allergies. I’m participating in six different projects this year.  For example, I’m part of the initiative to secure safe food. I’m working to increase accessibility of food allergy options in restaurants, school cafeterias and food pantries. Our team is only 10 people, but so far we’ve tapped into food pantries in CA, NY, MA and NJ to help this initiative. Locally I’ve been donating food-allergy-friendly options to the Milpitas Food Pantry, Ecumenical Hunger Program, Downtown Streets Team, Lifemoves and The River of Life Foundation located mainly in the South Bay. 

When I first contacted the food pantries, they had a huge percent of their population with food allergies or dietary restrictions. We created a long list of food brands that have products that are good for people with allergies or dietary restrictions. We contacted 300 food companies and asked if they were willing to donate products. Many are out of inventory right now, but we did get 30 brands that said yes so far. Some of the brands are Josie’s Gluten Free Mixes, Red Plate Food, HomeFree Treats, Sunbutter (they were particularly generous), Pretzel Pete, Toufayan, GoMacro, Follow Your Heart, Mom’s Place Gluten-Free, Primal Kitchen, Fun for All Foods, Lesser Evil, Katz Gluten Free, Rebecca’s Nut Free, Abe’s Vegan Muffins, Flax4Life, Rhythm Superfoods, Somersaults, and Rule Breaker Snacks. Daiya, Hope and Sesame, Tolerant Foods, and Mozaics also gave us coupons to use. I am always looking for new brands to help donate to these food pantries.

We started this project specifically during COVID because food options are limited, especially for those with food allergies. Food is either out of stock or people have financial adversity to buy food, so I wanted help out. 

We are also raising money on a GoFund Me for our initiative “Securing Safe Foods” to become an official non-profit. One food company, Kate’s Safe and Sweet, has  generously committed to donate a part of their sales to our GoFundMe. And we plan to partner with other organizations like Allergy Safe Card to make menus more accessible and friendly for food allergies. And we hope to convert our projects to become more long term. I am partnering with teenagers from around the country to make an impact nationally.

Jacqueline shares more about her involvement with FARE and supporting other food allergy families in the podcast from the Passion Project. She’s written about hidden allergens and other food allergy topics on the website Food Allergic Teens. 

 

Nicole's Food Allergy Journey

June 22, 2020

Michelle’s daughter Nicole was diagnosed with food allergies as an infant. Now during the COVID-19 pandemic, Nicole, age 4, has reached maintenance dosing with oral immunotherapy to peanuts. Michelle shares their food allergy journey from diagnosis to treatment, from fear and confusion to empowerment and gratitude.

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1. Why did you initially decide to come to Latitude?

Our 4 year old daughter Nicole was diagnosed with tree nut allergies when she was less than a year old. The first time we gave her peanut butter her entire face swelled so that she could barely breathe or see. It was terrifying. We discovered that she could tolerate certain nuts so we began doing food challenges. The challenges were done in allergist office geared towards adult patients, which made for miserable experiences. We had to wait more than six months for an appointment, the nurses weren’t used to working with children, the environment was dreary and our daughter hated it. After sharing my experience with our pediatrician, he recommended Latitude. We had a wonderful first visit at Latitude and every time since then.

2. Please describe your impressions of the care team, the office, and overall experience.

The office is inviting, clean, bright and happy. There are toys and snacks for the kids, and space for parents and caregivers to work while waiting. Dr. Rani showed care and concern when talking to us about Nicole’s allergies, and more importantly, explained options to help reduce her allergy like oral immunotherapy (OIT) which had never been explained to us before. The nurses and office staff know our family, remember us by name, and are wonderful with Nicole and our older son Ethan. Nicole started OIT in October 2019 and it has been going so well. I thought it would be a battle to get Nicole to go to Latitude for her updose every other week, but she loves it and tells all her school friends she is “going to Latitude today” with so much pride.

3. What was the best part of your experience at Latitude?

We are so much more at ease as parents sending her to school or social events where she may be exposed to nuts. We did not even know what OIT was before Latitude, and knowing that Nicole should be able to eat an entire peanut without going into anaphylaxis feels like a miracle. Joining the Latitude family has been one of the best decisions we’ve made as a family for the health and future of Nicole. 

We are thrilled that Nicole has now entered the maintenance stage of OIT as of May 2020. Our family has been so pleased with the entire OIT experience. It went by so quickly. Personally, I’m a little sad that the process is over since I really enjoyed the office visits — and I don’t feel that way about any other doctors visits. The office environment is so inviting and the Latitude staff are world class…and so darn friendly. Nicole wanted me to share these pics — she is so proud of her achievement and we’ve taped her certificate above her bed because she “wants to make sure it’s safe while she sleeps.” We are so grateful! Thank you for everything!


 

Cotten's Food Allergy Journey

May 20, 2020

We are excited to be introducing our first blog entry with patient stories! Cotten was only a six-month-old baby when he had his first severe food allergy reaction to peanuts. His mother, May, sought treatment and care for her baby right away. Their family had no family history of food allergies, but she knew as a hospital dietitian that food allergies were on the rise. Here is their story of their journey with food allergies.

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1. Why did you initially decide to come to Latitude?

As a hospital dietitian, I had the knowledge that food allergies were on the rise, but it never occurred to me that food allergies would impact my child. My son Cotten had a severe reaction when he was 6 months old to peanuts. His full body was swelling and his eyes were puffy. He had bad eczema as an infant. I realize now that eczema is a risk factor but didn’t know it at the time. 

I didn’t want to introduce any more solid foods until Cotten received a skin test for food allergies. At Menlo Medical, we found out that he tested strongly positive for peanuts and eggs when he was 7.5 months, just about when he first started walking. Menlo Medical allergists recommended that Cotten be seen at Latitude and investigate options such as oral immunotherapy (OIT), the peanut patch and other options. 

I reached out to Latitude when Cotten was 11 months old. As a mom who works full time (along with my husband who worked full time), I was concerned that this was too much of a commitment. But once I read more studies, I realized if I waited to pursue options like oral immunotherapy, that I might make a mistake. 

We moved his day care schedule and did an earlier drop off and were able to dose him. I think Latitude’s outreach was very helpful. I initially spent 45 minutes with my patient care coordinator, Debbie, to figure out whether we could make OIT work. Since Cotten is in a daycare center, there isn’t as much individual attention and I didn’t want to risk Cotten having a major reaction. This also highly motivated us to consider OIT. 

During our time at Latitude, we’ve had a lot of success with Cotten. Latitude ran more blood tests giving us a better picture of his allergies. He also did a baked egg challenge. We decided that egg wasn’t going to be part of his OIT since he passed his baked egg challenge and it wasn’t as severe as his peanut allergy. Cotten ate the entire muffin which was a 1/3 egg in a four hour period.

Cotten ended up doing OIT for peanuts, and was able to progress to maintenance fairly quickly. We’ve been exploring how to hide peanuts in food. We’ve crushed it in various things and baked it as well. We even make peanut blondie bars. We’ve figured out the variety which makes it possible to pack more peanuts.

Current maintenance has been uneventful in a good way. Within six months into OIT,  his eczema got meaningfully better. That made things more pleasant with less itching and the lightened load of not needing to be so vigilant with Cotten’s skin. Maintenance has been pretty smooth for Cotten.

toddler patient safely eating ice cream after treatment with oral immunotherapy for peanut food allergy

2. Please describe your impressions of the care team, the office, and overall experience.

Latitude is way beyond my expectations. Cotten loves nurse Liz and nurse practitioner Allison every time we go. For me, it is a personal break. I go to Latitude and have sparkling water and sit there for an hour. It’s really, really nice as a breather in a low stress environment. Suzie, at the front desk, is extremely helpful. She has been very responsive from an insurance and reimbursement process. She was willing to get itemized receipts really quickly and helped us  and go through the process quickly as possible.

3. What was the best part of your experience at Latitude?

The best part of our OIT experience is taking control of your child’s issue. You’re taking an active step to protect them. As opposed to abstinence for years which makes me nervous. The best part of Latitude is the staff. The office visits have been very warm and pleasant. My older son likes to join the visits to Latitude to play and eat snacks. Makes it more enjoyable for Cotton.

4. How has your experience (and or diagnosis or treatment) at Latitude impacted your family?

My husband and I travel a bit. We’ve taken a few trips away from the boys. We go on date nights and leave the boys with a babysitter that knows how to use an Epipen, but I don’t think we could have done any of these things if my son was still abstaining from his allergens. We wouldn’t feel comfortable for long periods of time if someone else were feeding them and watching them. If the data turns out to be predictive for us, my biggest regret would have been not desensitizing early.  

5. Any other comments or feedback?

I preach OIT to a lot of my friends with food allergies. I realize it’s a huge commitment. But I realize if we can do it with our full time work schedules, anyone can do it if they’re motivated enough. I’m a great advocate.


 

COVID-19 Update: Latitude is open. Read about our COVID safety measures.