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Rose

Shortly after the incident, Dr. Levy tests Emma’s reactions to animals. Now she is suddenly anaphylactic to both horses and guinea pigs. Goodbye petting zoos (one of Emma’s favorite things).

Less than two months later, Rose takes Emma to one of their known “safe” places – Disneyland. Disney chefs are known for being amazing with food allergies, and Rose feels Emma is safe there. Until today. After a visit to The Tiki Room (where outside food is allowed), Emma tells Rose that she doesn’t feel good. Emma seems disoriented, and Rose notices that Emma’s face is beginning to swell. Suddenly that same, ominous, forced cough begins again – and Rose realizes Emma is having an anaphylactic reaction. Luckily Disneyland’s first aid station isn’t far. Rose runs there quickly after administering Emma’s EpiPen. Disney’s nurses immediately attended to Emma and paramedics (who are there, on property) arrived almost instantly. This time, it is determined, someone likely ate one of Emma’s allergens in The Tiki Room, leaving residue or crumbs on the benches. Emma, they conclude, must have inadvertently touched the residue, then her eyes, nose, or mouth – causing a life-threatening reaction.

Cross-contact. 
A whole new level of fear for Rose and Emma
.

A few days later, Dr. Levy tells Rose that Emma is now SO allergic that her hands must be cleansed with antibacterial wipes any time she touches something that has come in contact with others. He also recommends having separate dishes, pots, pans, and utensils for Emma going forward – to avoid cross-contact. At her annual allergy testing three months later, they discover that Emma is now also allergic to olives, avocados, and peaches. Rose is advised to have Emma avoid all pit/stone foods. 

In January of 2020, after a visit to a local aquarium, Emma falls asleep in the car, snuggling a toy souvenir she had selected from a bin. While driving, Rose hears Emma cough. A quick glance in her rearview mirror reveals that Emma’s face is red and swollen. Rose quickly finds a place to pull over and park, rushes to Emma’s side, administers her EpiPen, and calls 911. Once again, Emma is rushed by ambulance to the hospital for the now-too-familiar IV, heart monitor, and 8 hours of observation. It’s concluded that another child – with one of Emma’s allergens on their hands – must have touched the toy Emma chose. Another cross-contact reaction.

Nine months later, Emma invites friends over to play with Playdoh. They’re asked to wash their hands before touching the Playdoh, and all is well. Until later that day, after they’re gone, when Emma is playing with the dough by herself. Suddenly Emma is covered in hives on her arms and neck. Her face swells, her voice becomes strained, and her throat begins to close up. Once again, Rose must administer an EpiPen, and the routine of ambulance, IV, heart monitor, and 8 hours of monitoring repeats itself. 

The above is just the first six years of Emma’s life.

Emma now has her own pots and pans for her safe meals, her own grill, her own plates, cups, and silverware and her dishes are washed separately from the rest of the household. Any time they eat out at a restaurant, Rose thoroughly cleans the table and chair with disinfecting wipes before Emma sits down. They only go to movie theaters with leather chairs (so they can be thoroughly wiped down). All of Emma’s soaps, shampoos, and conditioners are different than her mother’s – because her allergens are present in most formulas. Many soaps, for example, have coconut or shea butter – so because labels are usually not provided/visible, Emma cannot risk using common hand soap while out in public. (Instead, she rinses her hands, dries them and then uses an antibacterial wipe to finish getting her hands clean.) When at school, she uses a disposable place mat every day, to avoid letting her food come in contact with the desk or table. Traveling can be extremely stressful. Flying is scary, because if Emma has an anaphylactic reaction on a plane, the pilots would have to make an emergency landing. When Emma flies, she and Rose must pre-board (so every surface of their seats can be wiped down). Rose also purchases disposable seat covers for the plane and packs plenty of safe food for the trip. These are just a few examples of how food allergies impact Emma’s life (and Rose’s)!

Although life can be challenging, Emma is active and happy. Actually, she is thriving! She is doing excellent in school, loves to play sports -- including softball, basketball and gymnastics -- and even became a girl scout in 2021. All she wants in life is to be a “normal” kid. At times that can be difficult, but Emma and Rose refuse to give up!

The first eight days of Emma’s life were the easiest. She was a happy, healthy baby, weighing in at 8 pounds, 9 ounces. But at just nine days old she was rushed to the emergency room – the first of many, many future visits to ‘the ER’.

Her first diagnosis, after that initial visit, was simply ‘acid reflux’. But her symptoms got progressively worse and she couldn’t hold anything down. Doctors prescribed Zantac…then increased dosages, but it wasn’t helping. Because she was prone to choking, her mother was instructed to keep her upright at all times – never flat or at an angle.

At the ripe old age of 25 days, Emma was rushed to the hospital again – this time, after violently choking, she began coughing up blood. The doctors admitted her and ran series of tests. An endoscopy revealed that Emma had torn her esophagus. Her medication was increased.

On a follow-up visit the next week, Emma (who had lost more than two pounds in her first month) was as diagnosed with “Failure to Thrive” and given a referral to a pediatric Gastroenterologist. He provides Emma with a special prescription baby-formula, in hopes that it will help, but Emma tears her esophagus again just two weeks later. Her formula is changed again, and her mother (Rose) is told that the next step would be a feeding tube.

Finally, the following month, a good diagnosis comes back…Emma has gained 6 ounces! She’s doing much better, and is cleared to eat small amounts of baby food.

7 months later, doctors tell Rose that Emma can now be given whole food, such as small pieces of bread, egg, cheese, etc. But everything Rose gives Emma causes her to turn red, swell, and/or break out in hives. 

It’s now clear that Emma is suffering from food allergies. But which foods? Her pediatrician draws blood to confirm what’s causing Emma’s distress. The results are heartbreaking. Emma is reacting to 8 of the top 10 allergens.

With Emma’s first birthday coming up in just a few days, Rose is referred to “Sensitive Sweets” in Fountain Valley, California. They provide a smash cake that is totally free of all Emma’s allergens – something Rose thought wouldn’t be possible, initially. 

At Emma’s first appointment with a specialist (Dr. Donald Levy) she is given her first back-scratch allergy test. This confirms her allergies, and an EpiPen is prescribed.

The following month Emma suffers a severe allergic reaction, despite having not eaten any of her known allergens. She is rushed to the ER and given a steroid shot and a prescription for a three-day steroid regimen. Less than a month later, she suffers another mystery allergic reaction. She’s AGAIN rushed to the ER and given steroids. And less than a month after that, another mysterious reaction. Another ER visit. More steroids.

Then, at 18 months old, Emma suffered her first anaphylactic reaction while eating ‘safe’ foods. At first it seemed like the other reactions (hives, etc.) But Emma began coughing strangely, then her eyes rolled back in her head and she went limp in her mother’s arms. She wasn’t breathing. Rose administered the EpiPen and called 911. Emma was transported via ambulance to the hospital, hooked up to an IV and heart monitor, and kept for observation. 8 hours later, she was released with another steroid regimen and Rose was told to follow-up with Dr. Levy. At the follow-up visit, Emma was tested for reactions to the ‘safe’ food she had been eating when she experienced her anaphylactic reaction. This revealed that she was now (suddenly) also allergic to two of her previous ‘safe’ foods – turkey, and mandarin oranges.

Four months later, at her annual allergy testing, Emma added two more allergens to her large and growing list of must-avoids. Less than three months later, she experiences another mysterious allergic reaction, and another steroid shot. And less than two months after that, yet another mystery reaction, and yet another shot.

The following year, at her annual allergy testing, no new allergens are confirmed, but Emma’s reactivity numbers are higher than they were before. And just two weeks later, she experiences a fresh new ‘mystery’ reaction while at a park. This time she experiences redness and hives on her face, thighs, and arms. Benadryl did nothing, and once again Emma was given steroids. 

Less than two months later, Emma gets a puppy – and is back at urgent care when she experiences an allergic reaction after being licked on the face. More steroids are given, and it’s discovered that the puppy’s snacks contained egg and milk – the residue of which was enough to cause a severe reaction in Emma.

Four months later, on Rose’s birthday, Emma goes on a train trip with her mother, uncle, and grandparents to San Juan Capistrano. It’s a day trip she’s taken with her mother several times with no incidents. They ate lunch, visited the mission, then ended the day at Emma’s favorite petting zoo. Emma pet and fed the animals, rode a horse, and then visited the guinea pig pen (her favorite). After playing with a few of them, Emma began scratching her face. Then her mother noticed a hive on her arm. A moment later her face began to swell, and hives covered her arms and neck. As Emma’s grandfather scooped her up to run her out of the pen, she began the same forced cough her mother had heard on the day of her anaphylactic reaction. Rose administers the EpiPen while Emma’s uncle calls 911. She is rushed by ambulance to the hospital, and as she arrives begins to experience a rebound reaction. The paramedics administer ANOTHER shot of epinephrin, then she's rushed into the ER where they start an IV, and begin pumping her full of medication. She’s there, on a heart monitor, for the next 8 hours. 

Emma's Story

Most people never see the inside of an ambulance. For Emma, it’s become a way of life – as have shots, blood draws, and painful allergen scratch tests. But Emma is brave…like so many other children with similar stories. Because, unfortunately, these stories are abundant – and many people don’t understand just how dangerous the world can be for people like Emma.

That’s why “Allergic Emma” is on a mission. A mission to spread awareness, offer support, and advocate for the food allergy community.