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kids with food allergies

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Ming Tsai’s Food For Thought

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My journey with food allergies began when I opened my first restaurant, Blue Ginger, in 1998. I felt it was important that our kitchen be mindful of food allergies to ensure that all customers could safely dine with us. Little did I know that soon enough food allergies would become an enormous part of my everyday life. 

Just a few years after opening Blue Ginger, my oldest son was diagnosed with multiple food allergies; in fact, he was born severely allergic to soy, wheat, peanuts, tree nuts, dairy, shellfish, and eggs. At first, as a chef, I thought it was an unfunny joke from upstairs. But I soon realized it would be an invaluable lesson and opportunity. I quickly learned that trying to eat at restaurants with food allergies was a much larger task than I imagined. Even though I had established protocols in my restaurant for those with food allergies, most other restaurants didn’t take the same care. I can recall a few times where my family and I were turned away because the chef or restaurant did not want to accommodate us. There were a few occasions where my son was accidentally served a dish containing a small amount of one of his allergens, and within minutes he began exhibiting symptoms of an anaphylactic reaction. As a parent, it’s one the scariest experiences. Thankfully, my wife is a trained nurse, and we were able to spot the signs quickly and administer epinephrine right away. 

First implemented at Blue Ginger, and later at Blue Dragon (which is 100% peanut and tree nut free), we created a book that includes every dish on the menu and a comprehensive list of ingredients separated by dish components (i.e. proteins, starches, vegetables, sauces, and garnishes). This way, the patron and restaurant staff can easily determine which part of the dish has the allergen and omit the item from their order. For example, a customer with a peanut allergy would still be able to have the Chicken Satay with Peanut Sauce by opting for an alternate (and equally delicious) dipping sauce. 

Additionally, any ingredient processed and received from outside vendors is starred and the ingredients are indexed in our system (e.g., dried *egg* pasta). A highlighted ingredient indicates that it is one of the top eight food allergens: peanuts, tree nuts, wheat, soy, shellfish, fish, milk, or egg. Our protocols also ensure proper lines of communication between the front of house staff and the kitchen. Every manager, server, and bartender is trained to ensure all customers can safely dine with us. You can find an example of our documentation here.

My family’s experiences, and the knowledge that comes with being a restaurant owner and chef, inspired me to champion the first bill in Massachusetts to require all local restaurants to comply with food allergy awareness guidelines. It took four years working with the Massachusetts legislature to write Bill S. 2701, which was eventually signed into law in early 2009.  

I’m incredibly proud of the work that we’ve done in Massachusetts to help those with food allergies have a more positive restaurant experience. As a chef, restaurateur, and a food allergy parent, I’ve experienced this issue from multiple sides. From the customer perspective, it’s important to notify the restaurant when making the reservation, triple-check that the server understands the severity of the allergy, and do a final check when the food arrives at the table for any visible cross-contact with your allergen or mistakes. Food allergies are a two-way street. From the restaurant perspective, we need to have procedures in place to make sure customers can safely eat, but we also need to be made aware of any allergies and understand the severity so that we can accommodate. Over the years, I’ve developed a useful and effective way to better determine the severity of people’s food allergies. I ask, “Is using the same fryer okay?” The point we are getting at here is if shrimp is fried in a fryer, could the customer eat fries out of that same fryer? Depending on the answer we then have a better understanding as to the severity of the food allergy, which we use as a directive to the kitchen staff. 

Restaurants should care about food allergies not only because it keeps their patrons safe, but also because it’s smart business. The hospitality industry can be challenging, and meeting customer’s demands is always of the utmost importance. At the end of the day, we are all fighting for loyal customers. 

I guarantee you, if you serve a food allergy customer a delicious and safe meal, and they leave smiling, you’ll have a customer for life.

Peace and Good Eating, 

Chef Ming Tsai

 

Ming Tsai holds an equity stake in Allergy Amulet.

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The 411 on the 504: School Allergy Plans Decoded

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Last month we covered the basics of kids and epinephrine. This month we’re bringing you the skinny on school management plans for your child’s food allergies.

Are you wondering about a 504? An IEP? Have we lost you? 

Don’t worry, we’ve got you covered. 

Setting Up the Plan

Most school districts have district-wide plans for food allergy management, treatment, and reaction prevention. Many states also offer suggestions for school districts on managing food allergies based on guidelines from the Centers for Disease Control and Prevention. To date, there is no federal regulation that standardizes these policies and procedures, so these policies vary between states (and often between school districts within each state). 

The first step in setting up an allergy management plan for your child is to reach out to your child’s school. Many schools will ask you and your child’s doctor to fill out an allergy and anaphylaxis emergency plan form, although this form can go by different names. This form covers what steps school staff should take in case the child is exposed to an allergen or if he/she exhibits symptoms of a reaction. The American Academy of Pediatrics published this template form for reference. Once submitted, the school nurse typically prepares an Individualized Healthcare Plan (IHP): an internal document that outlines the processes the school should follow in the event the child experiences an allergic reaction. 

Some parents go one step further and request a 504 plan. Section 504 is part of a federal civil rights law that protects individuals with disabilities and health conditions, including life-threatening food allergies. The law applies to all schools and programs that receive financial assistance from the U.S. Department of Education (so all public schools and some private schools). A 504 plan lays out how the school should prevent and respond to allergic events. If a 504 plan protocol is not followed, there are several dispute resolution options available for parents. 

To secure a 504 plan, a parent must contact the school district’s 504 coordinator, who works with school officials to determine if the child qualifies. This determination is based in part on medical history, so your doctor may need to provide the school with this information. If the child qualifies, the team will work together to determine what special accommodations and protocols must be followed. 

Notably, if your child has a disability and qualifies for an Individualized Education Plan (IEP), a separate 504 plan is not necessary. The child’s food allergy accommodations may be joined under their IEP. Also of note, in some non-religious private schools where 504 plans do not apply, parents may rely on the Americans with Disabilities Act (ADA) to ensure that the school implements a food allergy management plan for the child. 

School Policy Options

Since there are no national standards for food allergy protocols, policies vary widely between schools. 

According to a recent study surveying school nurses across the country, the most frequently reported policies include: training school staff to respond to allergic reactions and anaphylaxis, using epinephrine autoinjectors, and managing for cross-contact in cafeterias. Other policies commonly implemented include: community food allergy awareness events, designated lunch areas for children with food allergies, and food guidelines for classroom celebrations.

The least frequently reported policies were: allergen labeling information in cafeterias, food management policies for after-school activities, and school-provided stock epinephrine for field trips and off-campus outings. In light of the differences between school policies, parents should understand their school’s protocols before developing their child’s plan.

Words of Wisdom

Finally, we talked with a few food allergy parents in different school districts and asked them to share a few words of wisdom on these management plans:

- “Plans may be different within the same school system—as your child goes from elementary to middle to high school, you will want to revisit your plan. For example, once a child moves to a different school building, new protocols may be appropriate. Older children may also be allowed to self-carry epinephrine or antihistamines.”

- “Make sure your plan or school policies cover transportation to and from school if your child rides the school bus.”

- “Think about after-school plans for your older child, as middle and high school students often have plans with friends after school. For example: can they store their medicine in a school locker during the day–even if the school doesn’t allow self-carry–so that they are prepared to go to a friend’s house or activity directly after?”

We hope this rundown of plan options, food allergy management policies, and parenting wisdom helps you to better advocate for your child’s food allergy needs!

-      Susannah and the Allergy Amulet Team 

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Best Practices for Kids + Epinephrine

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I’m not quite sure how summer passed by so quickly. Is it really back-to-school season already?! As families gear up for the school year ahead, we thought it would be a great time to review current best practices for kids and epinephrine—something every parent should know even if your child has no food allergies! 

Here are a few things to remember as you prepare for your child’s fun (and safe!) return to school.

Educating Your School Tribe

It’s a good idea to get your child’s food allergies on the radar of their school caretakers before the year begins—especially if your child is changing schools. Contact their school nurse and teacher to plan for where the epinephrine will be stored and how it will be used in case of an emergency. You may also want to discuss how snacks and treats are handled in the classroom. Many schools have food allergy policies in place, but some protocols are at the teacher’s discretion. 

It doesn’t hurt to schedule a face-to-face with your child, teachers, and caregivers before school starts to talk through your food allergy game plan. As a bonus, this gives your child an opportunity to meet their teacher before the year begins and help them tackle some of those first-day jitters! 

Epi Dosing Options

There are currently three different epinephrine dosages available. For adults and kids who weigh more than 30 kilograms (~66 pounds), the recommended dose is 0.3 milligrams. For smaller kids weighing between 15 and 30 kilograms (~33-66 pounds), the recommended dose is 0.15 milligrams. Several brands offer both dosing options, including EpiPen, Adrenaclick, and Auvi-Q.  

For infants and toddlers who weigh between 7.5 and 15 kilograms (~16.5-33 pounds), Auvi-Q makes an auto-injector with a lower dosage (0.1 milligrams), which also features a smaller needle. 

Make sure to check with your doctor to determine the best option for your child! 

Safe Storage

Remember that epinephrine is temperature sensitive. The medication should be stored at room temperature and never in extreme hot or cold climates (e.g., car glove compartments). Some brands also recommend that users periodically check to ensure the liquid has not changed color. If the solution assumes a pinkish or brownish hue, this can indicate decreased effectiveness. Epinephrine is light sensitive too—so store your auto-injectors in cases!  

Parents should work with their child’s school or daycare provider to map out a plan for both on-site and off-site storage (e.g., field trips), to ensure availability and maximum effectiveness. 

Using Your Epinephrine

As explained in one of our earlier blog posts, the outer thigh is the best place to administer the injection, even through clothing if necessary. Most manufacturers offer videos on their websites to demonstrate how to use their product. These can be a great resource for new caregivers and anyone that should be prepared for an allergic emergency. Like CPR, administering epinephrine is a good skill for any parent to have in their arsenal.

Replacing Your Supply

Currently, most auto-injectors expire within 12 to 18 months. Make sure to check your epinephrine expiration dates and mark them in your calendar. A good rule of thumb is to always have two auto-injectors in close proximity to any food-allergic child in case one is defunct (and in some cases, two injections may be required!). 

As you replace old auto-injectors, remember that some manufacturers offer coupons or other financial assistance, especially for lower income families.  

While we hope you never have to use an epinephrine auto-injector, we share these reminders to keep all of our children safe as we send them off to the classroom! 

- Susannah and the Allergy Amulet Team  

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What Food Allergies Can Teach Our Kids

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Every now and again, I like to write about my personal experience as a mom managing food allergies. Parenting is no easy feat, but it’s especially tough when you're raising a child that could stop breathing if accidentally exposed to certain foods.   

Although peanut and tree nut allergies are not something I would have chosen for my daughter, there has been an upside to her having food allergies. For one, our family has to look more carefully at the ingredients we put into our bodies, which has made us healthier eaters. The greatest gifts, however, have come in the form of life skills and values my daughter has learned at a young age.

Below are a few that immediately come to mind. 

Diligence. Now that my daughter is entering kindergarten, she’s starting to take charge of carrying emergency medicines to and from activities and storing them appropriately. Increasingly, she’s having to brave the world without me. Whether at school, summer camp, or a birthday party, she knows it’s her responsibility to ask if a food is safe when I’m not there to help her read the label. 

What has she learned? To be detail oriented and persistent—qualities that will help her in countless facets of life. 

Compassion. We talk to our daughter often about things that make her unique, like food allergies and wearing glasses. I find these talks help her relate to the differences between people both physically and situationally. Last year we saw a homeless family outside of a local store asking for money. After she asked me a few questions to better understand the situation, she decided we should give them the snacks we brought in the car so that they wouldn’t be hungry. Cue my proud mama heart swelling! 

Compassion is one of those life skills that will serve her well as a child AND as an adult. 

Time Management. It takes time managing food allergies! Label reading and meal planning take a lot longer when you have to think about a food allergy. Our daughter completed OIT for her nut allergies in 2017, and while it’s now been a year since we finished, she still has a daily maintenance dose of several nuts and a mandatory hour-long rest period afterward. It can be hard to find time to squeeze in her maintenance dose and rest time each day (today it was sandwiched between summer school and a T-ball game!).

Showing her how we map out each day and carve out time to manage her food allergies has been a great lesson in time management that will serve her well as she enters “big kid school” this fall. 

Bravery. It can be hard to stand up for yourself, let alone when you’re a small child! Food allergies have nudged her to become her own self-advocate (and a food allergy advocate!). I’d like to think we’ve led by example as her champion and guardians all these years and I’m proud to see her now standing up for herself (and her health). 

I hope her bravery goes beyond self-advocacy. I hope her newfound courage leads her to try new things, persevere through adversity, and stand up for others in need.

We all have moments when food allergies feel defeating, inconvenient, and stressful. But for all the woes allergies bring, they can also be a gift. It all boils down to perspective. Adversity breeds strength, and I see that strength in my daughter more and more each day.

-      Meg and the Allergy Amulet Team

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What To Expect When You’re Expecting…An Oral Food Challenge

My daughter, moments after finishing her first oral food challenge.

My daughter, moments after finishing her first oral food challenge.

This topic is pretty fresh in my mind as my daughter underwent an oral food challenge to macadamia nuts last week. In case you’re not familiar with an oral food challenge (OFC), or haven’t experienced one yet, let us fill you in.

Today, oral food challenges are considered the gold standard for food allergy diagnosis in children and adults alike. Skin prick and blood tests aid in diagnosis, but they are prone to error—false positives are not uncommon. You can read more about food allergy diagnosis methods in our blog Food Allergies Today: An Expert Q & A.

There are typically three reasons why you might do an oral food challenge:

1. You or your child tested positively for a food allergy but have never actually eaten the food.

2. You or your child tested positively for a food allergy and have eaten the food before with no symptoms.

3. To see if you or your child has outgrown a known food allergy.

An oral food challenge is usually held at your allergist’s office over a few-hour period. The allergist administers tiny amounts of the potential allergen in gradually increasing doses over a set period of time (usually 3-6 hours). In my experience, the whole challenge start to finish lasts around 4 hours. Once the full serving is administered, the doctor will typically observe the patient for a couple hours to monitor for signs or symptoms of an allergic reaction. If symptoms occur at any point during an OFC, the challenge stops and symptoms are treated immediately.

Importantly, not everyone is a good candidate for an OFC. According to allergist Dr. Jordan Scott, “when asthma is flaring or when patients are ill, we don’t challenge.”

Let’s talk about what to expect. First, block off the day, because even if the OFC is expected to last only a few hours, the experience can be emotionally draining and stressful. Being prepared and understanding the purpose and procedure is incredibly important! Below you’ll find a list of things to prepare ahead of time so you can tackle the challenge head on. 

Ask your allergist what he/she needs you to bring. He may ask you to provide the food for the challenge, or his office may provide the food (we’ve done both). If you’re providing the food, make sure you’ve done your homework to ensure it’s not processed in a shared facility or processed on a shared line with something else you’re allergic to. For example, when we challenged sesame a couple years ago, we ensured the hummus we brought wasn’t processed in a shared facility with nuts: my daughter’s other allergen. We didn’t want cross-contact playing a factor.

Ask your allergist what you should stop doing. Ask your allergist what medicines you need to stop taking before the challenge. Our allergist requires that we stop giving our daughter her daily antihistamines for seasonal allergies a few days before the challenge, as that could mask reaction symptoms during the OFC. Additionally, she cannot take any asthma medicine that day. However, if asthma symptoms start flaring, there’s a chance they’ll want to play it safe and reschedule your challenge anyway—clear communication with your allergist is key!

Bring lots of activities for entertainment. If the trial is for a child, I’ve found that new activities, games, and library books always help to hold their attention longer. Having a favorite stuffed “friend” or something that the child associates with comfort is helpful too. If you’re an adult, a good book and your favorite digital gadgets will probably suffice!

Pack safe snacks. If the challenge goes well, you may be at the allergist’s office for several hours. However, the tiny doses of food your allergist administers aren’t likely to fill you up ☺. We like to bring some of our daughter’s favorite tried and true snacks that we know are safe (another way to avoid bringing cross-contact into the equation!). Since the challenge is at an allergist’s office, and there will likely be patients in the near vicinity with food allergies, it’s an added bonus if you can bring foods that are free from the most common allergens: peanuts, tree nuts, fish, shellfish, wheat, egg, milk, and soy. I also bring disinfectant wipes in case the food spills so that I can clean it up properly for the next allergic patient. Good food allergy etiquette is important!

Bring your emergency medications. While this may seem unnecessary (hello, you’re at the allergist’s office ☺), it’s important. There’s always a small chance of a delayed reaction, and if that happens on the way home, you’ll want to have your epinephrine and antihistamines at the ready.

Stay calm. If you’re a parent accompanying a child to an OFC, it helps to remain calm if your child experiences an allergic reaction. “If a reaction occurs, it is important for parents to remain calm because children can pick up on the anxiety and feed on that,” allergist Dr. John Lee advises. If your child experiences a reaction, Dr. Lee also suggests that parents avoid calling it a “failed challenge” in front of their child, noting that “this can make a child feel as if they’ve somehow failed, or done something wrong.”

Leave the siblings at home. If the food challenge is for your child, it’s smart to leave any siblings at home so you can stay focused—especially in the event of an allergic reaction. Best-case scenario, your child doesn’t have a reaction and it ends up being quality time with your babe. If you’re an adult, you’ll still want to bring someone with you for support and to make sure you get home safely.

Set a course of action/next steps. Once the challenge is complete, talk to your allergist about next steps. If the challenge went well, make sure you know how to proceed with exposure to the food moving forward. If it didn’t, they may recommend future testing/follow up, and possibly strict avoidance of the food.

I hope you find these tips helpful! After experiencing my daughter’s first oral food challenge, I felt far better equipped to take on the second. In case you’re wondering, she passed her OFC to macadamia nuts! This is one nutritious food we can add back into her diet. Hooray!

If you’re interested in discussing oral food challenges further, let me know. We’ve been through several, so I know the ropes pretty well!

- Meg and the Allergy Amulet Team 

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OIT—Is It For Me?

Feeding your peanut-allergic child peanuts is not easy as a mother—I would know, I do it every day. Your instincts as a parent are to keep your child as far out of harm’s way as possible. But in today’s world, peanuts may be the best management tool we have for my peanut-allergic child.

Let me explain.

My daughter was born with a severe allergy to peanuts and tree nuts. For the first three years of her life, we strictly avoided these foods. She’s now four. Last April, we agreed to undergo an oral food challenge at her allergist’s office to find out if she was still allergic. Her peanut blood test numbers had dropped considerably—this blood test measures levels of Immunoglobulin E (IgE) to individual allergens in the body. IgE is the antibody that triggers food allergy symptoms. Plus, she hadn’t been exposed to peanut since she was a baby. Unfortunately, the oral food challenge outcome wasn’t as we hoped: after ingesting ¼ of a peanut, split into three gradually increasing doses over a 45-minute period, she experienced an anaphylactic event and we had to administer epinephrine. It was an emotional day, to say the least.

After discovering that she was still severely allergic to peanuts, we decided to explore oral immunotherapy: a method of food desensitization that involves re-introducing the immune system to the allergenic food in gradually increasing amounts over time, with the goal of eventual tolerance.

For our family, the results have been life changing. The same little girl that reacted to ¼ of a peanut now eats 12 peanuts daily with zero symptoms. But OIT is not necessarily for everyone, so I’d like to share our family’s journey and offer some insights into the process so that you can determine whether it’s a good fit for you or your child.

If your allergist doesn’t have a clear picture of your allergy severity, treatment may start with an oral food challenge. Once the individual has been identified as an OIT candidate, they are typically provided a juice-like beverage containing tiny amounts of the allergen. This beverage is consumed during the same two-hour period every day. Depending on how quickly a patient builds up a tolerance, your allergist may recommend coming in every week or two for an “updose”—an increase in the amount of allergen consumed. As the immune system grows more tolerant, the patient eventually moves to a powder form (which is typically sprinkled onto food), and finally to solids (e.g., whole nuts).

Importantly, OIT requires a considerable time commitment. Although updosing typically occurs every week or two, the allergen must be consumed every day to build and maintain tolerance. OIT also places constraints on physical activity. During OIT, the patient can only engage in calm, quiet activity half an hour before dosing, and at least two hours afterwards (during their observation period). This ensures that the immune system doesn’t get “revved up” unnecessarily and trigger an allergic reaction.

Is OIT perfect? Not quite. For the foreseeable future, my daughter must eat 12 peanuts with a two-hour observation period everyday. However, we can now choose the time frame each day, and expect the observation period to shorten over time. There’s also a measure of unpredictability. On two occasions, our daughter developed a couple hives after her prescribed dose, and we had to give her antihistamines. Other times, we had to lower her dose because she was sick, which can compromise the immune system. It is these situations, and the risk of producing a more serious adverse outcome, that discourages many allergists from taking up the practice. Indeed, OIT is still relatively controversial. Additionally, OIT treatments are still in their nascent stages and are not widely practiced, so there is less data and information available.

Importantly, not every food-allergic child or adult is a good candidate for OIT. For example, if a patient has severe environmental allergies, acute asthma, or eosinophilic esophagitis, they will not likely qualify for OIT. Additionally, OIT treatment is not available for all allergens—desensitization to peanuts, for example, is far more common practice than, say, shellfish.

If you think OIT may be of interest to your family, I’d encourage you to talk to your allergist and seek out additional information and guidance. You can also reach out to me at mnohe@allergyamulet.com for more on the parent perspective—I’m always up for a good food allergy chat!

- Meg, Director of Strategic Development

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Raising a Teen with Food Allergies: First Kisses and Fighting Bubble Tendencies

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