Clowes to Help Families Cope with Food Allergies

FAIRFAX, Va. (Jan. 20, 2012) - The Food Allergy & Anaphylaxis Network (FAAN(TM)) is pleased to announce that longtime food allergy advocate Gina Clowes has joined the organization as Vice President of Member Relations.

Clowes brings to FAAN an extensive knowledge of food allergies on a personal and professional level. As an author, advocate and educator, she has helped thousands of families adjust to life with food allergies. As a mom, she has helped her son manage multiple food allergies for more than 10 years.

"Gina is an invaluable resource for the food allergy community," FAAN CEO Maria L. Acebal said. "Her ability to instill confidence and hope through education is so important."

FAAN members will immediately reap the benefits of this new role, as Clowes unveils in the coming weeks several new programs and features including:

* Dedicated weekly call-in hours for members with questions
* Debriefing sessions following FAAN conferences to help members decompress and assimilate what they've learned
* Monthly webinars for members on a variety of topics including safety and inclusion at school, coping with the emotional toll, and helping others understand food allergies

"My life was turned upside down when my son was diagnosed with over a dozen food allergies. I was completely overwhelmed with how much I had to learn and how little the outside world understood about food allergies," said Clowes. "We've come a long way since that time; however, recent incidents at several schools highlight the fact that children are still at risk. I am very passionate about this cause and so grateful to be in a position to help even more people in my new role."

Eleanor Garrow, FAAN's Vice President of Education and Outreach, said, "Gina has a wonderful level of compassion and empathy. She has made it her life's work to help others adjust to managing food allergies. I’ve worked with Gina on many initiatives and her expertise is beneficial to FAAN and our members. We're delighted to have her join us!"

Clowes is an advocate, author, speaker, and the founder of AllergyMoms.com. She is the author of the best-selling children's book One of the Gang: Nurturing the Souls of Children with Food Allergies and writes a popular column, "The Parenting Coach," for Allergic Living magazine. Gina is a certified life coach and has a Bachelor of Arts degree from the Pennsylvania State University where she studied social and behavioral science.

To become a FAAN member, please visit www.foodallergy.org/membership.
About FAAN

During recess, Ammaria felt sick and ran to a teacher for help. The teacher rushed her to the school clinic where, it was reported, they tried to reach her parents first and then called 911.

Emergency crews were called on Monday around 2:30 PM and when they arrived, 7 year-old Ammaria was in cardiac arrest. She was pronounced dead at the local medical center.

I’m so heart-broken for this family. I just cannot imagine what this child’s last moments were like. She died without her mom or her dad by her side- likely during an ambulance ride. I hope that her teacher or the nurse rode in the ambulance with her.

I wonder what the other food allergic children and their families in this district must be thinking and feeling. It must be terrifying to have to attend school knowing that something like this could occur.

How can this still be happening?

Ammaria’s mother says that she authorized a Food Allergy Action Plan so that her daughter could be given Benadryl at school. She also says that the school refused to take her EpiPen.

Shawn Smith, a spokesman for Chesterfield county schools, told ABC News that: “The medication we receive, or should receive, has to be specific to that child, whether it’s over-the-counter or prescription.”

It has also been reported that the school had EpiPens in the health clinic and presumably Benadryl.

It’s clear that we do not know the whole story. All we do know for sure is that for whatever reasons, the plan in place did not work.

No one gets off easy when a child dies a preventable death.

The adults who were there with Ammaria that day will be scarred for life, as will the students, the teachers, Ammaria’s siblings, and her parents.

And now the education will begin…

Like many other districts where food allergy fatalities have occurred, policies will be revamped and reinforced and allergic children will be safer at this district, maybe even this state, in years to come.

Teachers will know who the food allergic students are and they will look at every symptom they experience through “allergy colored glasses”

Teachers will monitor recess and have EpiPens and Benadryl with them at all times.

And in the event of a reaction, they won’t even think about calling a parent until the child’s life has been saved with her EpiPen and 911 has been called.

Wouldn’t it be great to live in a world, where the call went like this?

“Ammaria is fine now but we did have to treat an allergic reaction just now. We administered an EpiPen and gave her Benadryl. The EpiPen worked very quickly and the ambulance is on the way so that they can monitor her.

I will ride with her in the ambulance and you can meet us at the hospital. Here, do you want to talk to her?”

Obviously Ammaria’s mother got a very different call.

What’s left for us to do now?

We have our work cut out for us but first, and foremost make sure that your allergic child has a written plan (504 or IHCP) that includes how to recognize and treat allergic reactions and the accommodations needed so that reactions can be avoided.

Next, make sure that all adults who care for your child (teachers, aides, sitters, relatives, etc) are trained to avoid, recognize and treat allergic reactions.

There are risk factors for associated with many (but not all) cases of fatal anaphylaxis*:

1) Peanut or nut allergy
2) Asthma
3) Delay in administering epinephrine

*Children and adults have suffered fatal allergic reactions to many other foods.

We can’t do anything about the first two, but we can make sure that EpiPens are immediately accessible (which means unlocked) and that caregivers are trained to administer them.

* ANY food can potentially cause an anaphylactic reaction. Fatal and near fatal allergic reactions have occurred to many other foods including milk, wheat, egg, shellfish, fish and even lesser known allergies such as lentil, kiwi etc.

The fact that most fatal reactions occur to peanut or tree nut does NOT mean that we can let our guard down when caring managing other food allergies. Take all food allergies seriously.

Keep in mind that past reactions do not predict future reactions. Even if your child’s past reactions have been hives or stomach cramps, this doesn’t mean that her next reaction wont be much worse. No one has a fatal reaction before they have a fatal reaction.

If your child is in someone else’s care and you don’t feel completely confident about their ability to manage an anaphylactic reaction, then take this opportunity to tell them what they need to know.

If you are a teacher or school administrator, review your food allergy policy. Share Ammaria’s story with your staff and make sure every teacher and aide understand the reality of anaphylaxis. Eight percent of US children now have at least one food allergy and 25% of epinephrine administrations at school are to children with no known allergies.

Now is your chance. There is no sign from God or the Universe on the day a tragedy will occur. We have to be vigilant every day.

My mom injected me with the EpiPen® and I’ll never forget the feeling. Right away, I felt relief, and I could breathe.

Kyle: Right. Even last Christmas, I was offered meatballs at a family Christmas party, and as it turns out, they had egg in them.

I say this because these are the things that happen even with family and friends who love you so you have to be aware.

Kyle: Parents need to know that teens will take chances no matter what - they are hardwired to take risks. It’s best to help them explore options ahead of time so they are more prepared when new situations present themselves.

1) If in a crowd, teens can suggest restaurants that are safe for them.

2) Order only menu items that they know are safe. Even call ahead.

4) Eat at home or bring your own safe snack.

I’d love to look back someday when there is a cure and say “Wow, remember how much food allergies affected people back then!”

For right now though, I’d love for us to be at a point where people understand food allergies. Where they “Get it’ just like food allergy parents get it.

by Kyle Dine

I can be one of the gang
My pals and I can just hang
What we eat may change but we’re really just the same
Cuz I can be one of the gang

I can be part of the group
Me, him, her, and you
Yeah we’re all in the loop, we’re a big happy troop
Cuz I can be part of the group

Like peas in a pod we all belong
We can be different and still get along
Friends we are, and will always be
I look out for you, and you look out for me
No matter where we go or what we do
It’s so good to have a friend like you

I can be part of a team
Together we can build anything
We can play any sport or act any scene
Cuz we can be part of a team

We can all be friends
The good times they never end
But when times get tough, a hand we will lend
Cuz we can all be friends

Like peas in a pod we all belong
We can be different and still get along
Friends we are, and will always be
I look out for you, and you look out for me
No matter where we go or what we do
It’s so good to have a friend like you

What we eat may change but we’re really just the same
Cuz I can be one of the gang

It started out with her asking if my son Daniel could have Sunkist soda. I'm not a big soda fan but with allergies to seven of the top eight allergens and more, I'm always lenient about what my son can have when he's with friends.

Years ago, Heidi asked for a list of safe foods for Daniel. I also trained her on administering his EpiPens and the signs and symptoms of anaphylaxis, and she keeps my son's Food Allergy Action plan and medications at her home.

I'm relaxed when my son plays there. Heidi "gets it", she understands the severity of food allergies, but there is so much more.

Heidi is the mom who has the "special" gift bag for Daniel at every birthday party. My son's treat bag looks exactly like all of the others, except every piece of candy is 100% safe for him.

Heidi is the mom who makes special shopping trips, fills a pumpkin with safe treats so her kids can "ghost" our house and my son can enjoy all of the safe goodies.

And today, I found out that Heidi is also the mom who has set up a safe corner in her kitchen with "Daniel-safe" snacks, so he can help himself to safe Kettle corn, Lays Barbecue Potato chips or Swedish Fish whenever he likes.

Many of us have "safe" shelves or cupboards in our homes for our kids. How many of us are lucky enough to have a friend or loved one set up something like this for our kids?

I let Heidi know today how touched I am by this. And I hope that if you have a Heidi in your life, whether it's a friend's mom, an aunt or uncle, or a grandparent, that you'll let them know how much it means to you, and your child.

http://tinyurl.com/3z2ldxm or read the abridged version below.

Gina Clowes: Good morning, everyone. I'm here with my friend Joel Schaefer today. Joel is the president of Allergy Chefs, Inc., a company that specializes in food allergy and special dietary needs training and product development. He's also the research and development chef for AllergyFree Foods. I met Joel when he was the special dietary needs manager at the Walt Disney World Resort, and his work and dedication there made a huge difference for families like mine at Walt Disney World. Joel has a new book called Serving People with Food Allergies, and it's an excellent guide for doing just that. Welcome, Joel.

Joe Schaefer: Well, thank you Gina, and hi everybody.

Gina: We're going to talk a little bit about your book today, which I absolutely devoured. I've read it twice already. So you have a milk allergy, and have experienced yourself, even before working at Disney, trying to get a safe meal while avoiding milk. Would you share a little bit about some of the mishaps and mistakes you've encountered when ordering a dairy-free meal?

Joel: When I found out I had this issue, I was in culinary school, and they didn't teach anything on food allergies. It was a challenge for me to actually go through school because so many things were made with milk and dairy products that I had to be very careful with what I ate. But I survived. I managed to get through it successfully. When I started going out and talking to restaurants and asking them, could they take care of me, there were a lot of issues. One, in particular, is when we were in Los Vegas. We were doing an analysis on restaurants and how they handled the dietary requests.

We went into a steakhouse, a four-diamond restaurant, and I'm thinking, "Hey, we'll be taken care of." We went in and asked to talk to the manager. They weren't even busy yet, so they had a manager come out and I said, "I have a milk allergy, and I was wondering if there's anything you could do for me here." And we looked at the menu, and I asked him some questions, and I told him, "Well, it's milk," and I told him all the other issues with it and went into detail about what ingredients they needed to look for, and the manager went back and said, "Well, let me go talk to the chef." They went and talked to the chef, and the manager came back out and said, "Well, we have this here and this here and this -" Bottom line, they said, "We really can't take care of you. We don't feel comfortable doing this," and I said, "Okay, great. At least you told me. I appreciate that."

And then we went out, but you think about four-diamond restaurant and a steakhouse, I thought something could be done, but they couldn't. But they were honest with me, and I appreciated that.

Gina: It's kind of a double-edged sword. We've been refused service before, and it's hurtful, but I would prefer that [in some ways]. One of the most important points of your book is when you say, "If you are not 100 percent sure you want to start a food allergy program, don't. There's no maybe. There's no sort of."

There's no "I think we can do this," and that is such good advice for anyone who cares for an allergic friend or loved one. It's scary when you go to a restaurant and they say, "Oh, yeah, yeah, yeah, we can take care of you. We get it," and you get that feeling like, "No. You didn't ask the right questions. You didn't really listen to me."

You tell restaurants "Don't rush them." When someone calls to discuss to food allergies, don't rush them off the phone. You need to take these conversations seriously.

Joel: You do, and another example with that is they need to train everybody at every level in the restaurant, and at Disney we said if someone came in with an allergy, you need to talk to a chef, or a manager because they have a better understanding of ingredients.

Another example: I went to a restaurant and just wanted a cup of coffee. I said "I have milk allergy. Do you have soy milk? Or something like that?" And they went back and they came back, "Well, no, we don't have soy milk, but we have half and half," and I'm going, "Half and half has milk in it! It's half milk!"

Gina: It's half milk and half cream!

Joel: That person didn't listen or they didn't ask the right question when they went back into the kitchen. When you're explaining to a server about allergies, they don't have the concept of ingredients like a manager or a chef should have. That why it's important, for everybody to be trained.

Gina: I absolutely agree. I remember a few years ago, there was a fatality after a girl ate at a fast food restaurant. I was talking with an attorney friend of mine, and she had some really good advice. She said, "I would never have let my allergic son eat there because it's staffed by teens." There are teens working in those shops by themselves. You're not going to get the same level of understanding as you would from a manager or for a chef.

So I loved in your book how you talk not only about food allergies, but also about other special dietary needs: diabetes, celiac and autism and how you address sensory issues to food.

You seem to have just a tremendous respect for parents and for others with special dietary needs, and you really get the nuances of managing these needs. You say, "Give them the brand they want. If they say it needs to be Dannon and not Yoplait, give them that and prepare the food exactly as directed by the parents and adhere to the special brands, et cetera."

Disney seems to have this down. What kind of feedback do you get from customers when you take service to the extra mile like that?

Joel: We learned that the consumer that lives with special diet buys products. They buy the ones that their kids are going to eat.

We sent e-mails to a lot of guests. We asked them, "What brands of food do you eat or which products?" So we knew ahead of time what were the better products. We bought those to meet our customers' needs, and when they found out- when they came to Disney World, and they said, "Oh, yeah, you carry Bob's Red Mill pancake mix. Oh, we trust that product, and we know how it tastes, so we feel comfortable having someone else make it for us because, one, you have a process in place, but we know that product, and that product we trust."

Gina: I can remember going to the bakery on Main Street and seeing the little individual bags of Divvies caramel corn and just being so happy like, "Yeah, that's home. We can do that one." Traveling with food allergies can be tricky.

Joel: We had a guest who sent an e-mail after they came back from their trip. They said, "We had just a magical time at Disney. The chefs were great. The food was great. It was the first time our child ate in restaurant in eight years." The child was eight years old.

They said, "We packed one full suitcase of special foods to eat, and we did not use one of them because you had prepackaged snacks, and your food was so fabulous, and it was safe. You had what we needed. We didn't have to bring these foods." And that's what's so important to restaurants to understand is prepackaged foods are your friend.

Gina: Without a doubt, and I've noticed with restaurants, even some of the restaurants that are becoming a little bit more allergy friendly, most of them don't have dessert foods.

We know that deserts and candies are higher risk, as far as allergic reactions, but still, when you do dine out, kids would like to have a dessert.

I remember one time we went to Disney. My son is allergic to seven of the top eight and more. We went to a little ice cream stand at one of the parks, with the little wrought iron chairs and I said, "We have this milk allergy."

I asked to speak to the manager and he came out with three containers. There was Soy Dream, Tofutti and Rice Dream, and they had chocolate and vanilla and safe Hershey's syrup and safe whipped cream! They made my son a safe sundae, and I can barely talk about it right now because I looked at my son - he never had that, - the social experience of just getting ice cream!

My other son, who has no food allergies, was able to get whatever he wanted too. To sit there with my family and have that normal experience of just an ice cream sundae–I'm like, "I'm just sold. We're coming back here every year."

A few years later, we stayed at Disney's Beach club. At this point, we were at the hotel, and we went there down to the ice cream parlor, and my son got his safe ice cream, the same thing, but then they handed us the container.

"Here, take this back to your room! Take this with you."-they said. Of course my son's eyes were as big as saucers. He was so excited. "I get to have the rest of the container?" But to know that they weren't re-scooping anything meant a lot. I can't say enough about how those small things mean so much to families like mine.

Joel: That was a policy, too, as you know. That's why we had the small pint. They could easily use that in almost a serving because there are only about two servings. What I am going to do with the other half? I'll give it to the guest!

That's why we had prepackaged snacks because I actually served some guests where they were nervous about dessert, and I said, "Well, I have this gluten-free brownie that I can let you look at, and if you can have that, you're welcome to."

So I came out and they got to look at the package, and they read the package, and they went, "Oh, he can eat that." I go, "Well, here, go ahead and you can open it and have it yourself." And they just enjoyed it and then I just went back and got another one and said, "Here, take this with you. You can have a snack later," and they would cry, they were so happy.

Gina: If companies only knew… We have one local restaurant that's safe for us, but we go there all the time. Anytime we have relatives in town we go there. We take them all. It doesn't matter what the service is like. If it's safe, at a minimum they're getting 20 - 25 percent tip. We were interviewed with a TV station, and of course, they were on there, and we sang their praises, and you mentioned them actually in your book! So I wish restaurants could understand how loyal families with special dietary needs really are.

Joel: I tell restaurants, "Of course you have to put policies and procedures in place, buy special products that will make it easier for you to serve these guests without a lot of second-guessing because you cannot second-guess yourself on this. It's not that you're only serving one guest. You're serving that one plus their family, plus their family's friends because that's a social place that they can go where - usually they have to do this all at home. But they don't always want to do that at home. They want to go somewhere and have that experience like everybody else."

Gina: Yes they do. So Joel, would you go over some of your tips for what people can do to increase their chances of getting a safe meal when they're dining out with food allergies?"

Joel: First, the most important piece is to contact the restaurant prior to your even going there. You can do research on the Internet to look at their menus and a lot of them have allergen statements, but that's just what's in the food. That has nothing to do with cross-contact, which is a big issue that a lot of restaurants don't understand.

Call the restaurant and talk to a chef or manager first and really get a feel if they understand what your needs are going to be. If you get a good results from that, then make your reservation and go to the restaurant. But have a predetermined menu item before you even go, what you've discussed on the phone.

Second, when you arrive, you make sure you talk to a manager again. Always ask for a manager or a chef.

You got to remember servers are working. If it's especially busy, they're running up to eight tables, so they have a lot of stuff going on. They're not going to understand or be able to think or absorb everything that you're going to be giving to them.

Talk to the manager or the chef on duty and review the menu option you already talked about. If they don't know what you're talking about, that's not a good sign. Say the chef wasn't there that night, or the manager you spoke with is not there. They didn't pass any information on! That would be my first red flag. But if they've said, "Yes, we know what you're having. This is what you discussed," you always want to ask again, "What is your procedure in your kitchen. What is your policy for this?"

Just so that you get a better feel of how are they going to prepare the food. What is the safe process? You have to ask for any ingredient labels on something. I suggest picking simple foods that are not grilled or deep-fried, something that can be cooked in a sauté pan. That's a safer option, but from a chef's mentality, they think, "Well, I have to make this fancy."

That's what they have to understand. The guest wants a safe meal, and when they're enjoying it as a family, it doesn't matter how fancy it is, as long as it's prepared correctly, and it's safe. So, call the restaurant first, set up a menu item, and then talk to a manager or chef when you get there to verify the menu item.

Gina: What about the serving of it? What's the ideal scenario, as far as actually bringing it out from the kitchen?

Joel: The ideal - before it even goes in [to the kitchen] someone should write your request down. Not just "Oh, I got it in my head." No, they need to physically write it down, so you can verify with them, "Okay, what did you write down?" So that it's verified. "Yes, I wrote down you're having this, this, and this."

You might already have your little allergy list you could give them, so they have that card, which is always a good thing, (the chef's card or your allergy list). Make sure they write it down, so when they go back to the kitchen, they know what they're supposed to make in the kitchen.

When it's delivered, it should be delivered by either the person that took your order or by another leader, like a manager or a chef. Restaurants have food runners that will just grab plates and take them out. You want to make sure that plate, what you ordered, is what it's supposed to be, and a manager or a chef should bring it to you.

Gina:

But we've still had mistakes. We called in advance, planned in advance, the manager took our order, and then it was delivered on a sesame seed bun. Mistakes are going to happen, and I think it's important to share there's no point where you can relax 100 percent. Even at a place like Disney, parents or the allergic patrons themselves still have an obligation to be checking things every step of the way.

Joel: You definitely need to check that food when it's delivered, even if you have to inspect it. Maybe it's the hamburger, and they put cheese on it. Then they remember, "Oh, cheese can't go on it. So they take it off." It happens.

Gina: If your book is the success that I hope that it will be, what is your big dream in regards to the restaurant industry and how they would serve customers with special dietary needs?

Joel: I want the culture to change. I want the awareness to build because chefs are supposed to be professionals, that's what the food service industry is: a service industry.

That doesn't mean we're just serving a small group. We should serve everybody! My hope is that this will build the awareness in the food service industry to where the restaurants that want to take on serving people with food allergies, will do it, and they will say, "Yes, we can do it, and we'll do it right."

That will open more doors for all those families that want to enjoy going out to a restaurant, make it more enjoyable for them.

Gina: Absolutely.

Joel: The revenue's there for the industry. That's what the restaurant asks for. "What's my bottom line? What's in it for me?"

There is definitely a return on investment based on that guest will feel comfortable there and bring in many other family members, so that will grow, a good standing in the community that you're willing to do this extra step to help those families that want to enjoy a great meal, and you're making a better culinarian out of yourself because you learn how to cook with alternative methods, and you learn how to cook food even at a higher level than you do currently now.

Gina: If the restaurant industry could understand that 12 million Americans with food allergies are often families who are mostly dining at home, who don't want to dine at home as often as we do, but we just don't have a Disney restaurant around the corner. If one out every ten restaurant owners would read your book and adopt the policies and procedures that you outline, we would be very, very happy.

If they really understood how families like mine are willing to pay for safe meals, and how grateful and loyal we would be, it would be well worth it for them to put in the effort to do it right, as you say.

Joel: My book makes it fairly simple because there are some really key, simple steps that they need to take, like referring the guest to a leader, and building a safe environment in your kitchen to prepare foods that way. Because we've been doing it so long at Disney, it is a simpler process, but once you get that system in place, it will get easier and easier as you continue to do it.

Gina: Your book is geared toward restaurants, but this would be an excellent book for anyone who has a food allergic person in their family.

Even for a grandparent to have a place to start, and you've got over a hundred pages of allergy-friendly recipes here. It's a great foundation for learning how to cook for those with special dietary needs.

So Joel, thank you so much for bringing this issue to light, and for your marvelous book. It's called Serving People with Food Allergies by Joel Schaefer. It's available at amazon.com. I'll be taking copies to some restaurants in my area very soon. It's been a pleasure talking to you as always!

Joel: Thank you, Gina. I appreciate it.

I really liked the look and design of the EpiPen case. The top part holds our Benadryl. The bottom zipper compartment, holds your Food Allergy Action Plan Cards and the EpiPens (or other epinephrine auto-injectors)

It comes in different colors but I really like the candy apple red one because it stands out in your purse. I’m one of those people who could live on a deserted island for a few weeks with the contents of my purse.

The Grab and Go Handbag can be used as a chubby little wristlet or with the attachable strap as a cute shoulder bag. The EpiPens are in their own separate compartment with their own Food Allergy Action Plan cards and the other section has room for powder, lipstick, comb and your phone.

Food allergy friendly companies often send product samples for me to review and I give 99% of them away. But, I’m going to have to hang onto this Epi handbag. It will be so convenient when traveling and nice not to have to lug a bigger bag around. The design is amazing.

I never imagined something so small could handle all of an allergy moms essentials!