Kids Food Allergies Blog

I love to cook. I love to eat good food. I love Linda Coss’s cookbooks because they enable me to combine these loves without using ingredients to which my daughter is allergic. As I wrote in an earlier post, I am a big fan of her first cookbook, What’s To Eat: The Milk-Free, Egg-Free, Nut-Free Food Allergy Cookbook.

Good news for Linda Coss fans. She just came out with a sequel: What Else is to Eat? The Dairy-, Egg-, and Nut-Free Food Allergy Cookbook. Here’s why I like it: It’s chocked full of ideas to help me to freshen up the food allergic family’s daily meal routine so that you’re not eating the same 3 or 4 things night after night.  There are lots of great marinade recipes in there (think flank steak, chicken prepared numerous ways, and even a barbecue sauce recipe) — great for people avoiding store bought marinades.  And the desserts in this cookbook are unusual.  I most look forward to trying the Fresh Peach Crumble. (I can think of no more fitting way to celebrate the end of summer.)  Check it out.  I think you’ll like it!

I spent the afternoon of Tuesday, August 12 frantically baking a birthday cake for “the new baby” that the whole family could enjoy. On Wednesday, August 13, I gave birth to a second daughter.

Little did I know that, at the same time I was baking, the good folks at Divvies were sending my family a box of beautiful, delicious cupcakes that would render my frantic efforts unnecessary.

When I got home from the hospital, we had a really great birthday party — and a birthday cake taste test. Three participants. One all-powerful judge.

So, which tasted better? The homemade cake (pink icing) or the Divvies cupcakes? “I like them both the same,” says daughter #1. “Does that mean I get to eat 2 desserts?”

Thank you, thank you Divvies for filling this market need for milk-, egg-, and nut-free cupcakes. We loved the wonderful treats. Thank you for sending them. We’ll be ordering from you again soon.

I’m not sure whether I’m alone in this, or whether I have company. So, I’ll put it out there. I’m really worried that the hospital staff will give milk formula supplements to my newborn in the hospital nursery. There. I said it. It happened to my first born five years ago. Different hospital, different time, different level of awareness? I am not trying to blame her severe milk allergy on early milk exposure. But, at the same time, I’ve worked so hard over the past 9 months to prevent food allergies in baby 2 that I would hate for a few bottles of formula to undermine my efforts in any way.

Since my husband and I will be unable to keep a watchful eye over the baby at the nursery 24/7 to prevent formula supplements, I did the very next best thing. I made a sign to hang on the baby’s bassinet. I hope it is effective.

On to fear 2: The baby books say I will need five servings of calcium/day to help my milk come in. I plan on taking calcium supplements. But I would like to meet at least part of my daily calcium requirement from a natural food source. There’s no way I can tolerate that much milk, regardless of the baby and food allergies. I can’t stomach fortified rice milk straight up either (a texture thing). But I have come to enjoy soy quite a bit. Soynutbutter. Soy cheese. Soy yogurt. Chocolate soy milk. Tofu even. How much is too much?

If you have any experience combating either of these fears, please leave a comment to tell me your story.

I can’t tell you how many times that family and friends have asked me when my daughter will outgrow her allergies and how we will find out.

I have found an informative video produced by ABC News that can help me explain the process to others in a straightforward, non-emotional way. Entitled Food Challenges for Children with Allergies, the video succinctly explains food allergy testing and walks viewers through the food challenge process from the perspective of an allergic child and his family.

For those of us struggling with how to prepare our children for food challenges, I thought that mother’s approach was a good model:

“Hayden handles food challenges with … 75% with excitement and hope, and 25% fear and anxiety, what if I have a reaction. And we talk very frankly and openly about the reality of it, if he had a reaction how that would be handled, that we’re in a very safe environment and they give such small doses that the reaction would most likely never get to be life threatening or very scary like the reactions he’s experienced before”

Good advice to keep in mind for our children’s next food challenges.

We’ve all been there. Just thinking about the spectrum of terrible things that could happen to your severely food allergic child can be scary enough to make you want to:

• prohibit them from leaving the house (going to the playground, the pool, or a baseball game)
• homeschool them ad-infinitum
• hold them close and never let them out of your sight.

It takes great courage for parents of severely food allergic children to come to grips with these fears and keep them at bay — for our children’s sake — so that they do not internalize our fears and become paralyzed by them. A healthy dose of respect for our children’s allergies is not only appropriate, but smart — because it can help to keep them safe. But empowering them to live safely while enjoying the world around them is even smarter, and healthier for your child in the long term.  Too much sheltering can create fearful children who are afraid to live life to the fullest.  This saddens me to no end.

These thoughts are on my mind because of two contrasting items I just came across.

• Peanut Free Mama points us to a wonderful NPR piece and a unique analysis of that audio clip essay and how it applies to parents of food-allergic kids. I highly encourage you to read and listen.
• KRDO.com posted a news clip about guard dogs for food allergic individuals. I had never heard of this before. While I feel this mother’s pain, I also feel for this child who is growing up thinking that the world is so scary that it cannot be navigated without assistance. I sometimes worry that we use food allergies as an excuse to be overprotective and not allow our daughter to try things that she can handle. But I never want her to think of her food allergies as an impairment that makes her different from (or dare I say inferior to) her peers in any way. And that’s why the guard dog solution frightens me. I’m concerned that the guard dog serves as a constant reminder to this child and to those around her that food allergies are a debilitating disability/weakness that prevent the world from being a joyous place. I hope that as she grows older, things will get easier for her and her family.

I’d welcome your thoughts on this.

Contractions are strong.

Nesting instinct is stronger. I went out yesterday and bought a fancy new vacuum. As my husband points out, the vacuum cost more than the 2 carpets in my house. Enough said.

Cooking autopilot is out of control. I have made (and frozen) so much food that I forgot to leave room in my freezer for one critical thing: a “birthday cake” that the whole family can enjoy when baby comes home from the hospital.

I ask you, as a desperate mother-to-be, can anyone recommend fantastic nut-free, dairy-free cakes or cupcakes that I can order online? I’ve read good things about Divvies, but have never met anyone who has tried them. I haven’t heard of any other company in this important niche market. We’ve never gone down this route before, because I’ve never had a need. But, I’m running out of steam. If I can find great cupcakes, I can relax a bit. But I have to get it right because, from my daughter’s perspective, bad cupcakes will be worse than none at all. So if any of you can recommend fabulous nut-free, dairy-free desserts that I can have shipped to me — please, please let me know. I appreciate the help.

This is Part 3 and the conclusion of my interview with Food Allergy Hero and expert, Maria Acebal, founder of Safe@School Partners.

It seems that there is great variation in how schools accommodate and provide safe environments for children with food allergies. Do you feel that this needs to be equalized? If so, what standards should be set? If not, is it better for school districts to have the ability to make/enact policies on a local level that meet the needs of their students? How, if at all, do you feel the federal legislation pending in Congress will affect the food allergy emergency preparedness of our schools and the safety of food allergic children?

Yes, standards would be wonderful. In my view, these standards would be simple and straightforward. With all the schools that I work with, I recommend just three easy-to-implement steps for them to operate in a “foodallergy smart™” way.

First, all adults who supervise food allergic children at any point in the day must receive annual training on how to (a) reduce the risk of allergen exposure; (b) recognize an allergic reaction; and (c) (preferably) how to administer epinephrine in case of a medical emergency, or at a minimum, how to summon someone immediately who can do so.

Second, a written food allergy policy and procedure document should be drafted that details the responsibilities of administrators, teachers, parents and students and addresses such everyday issues as classroom celebrations, field trips, and subsitutes. A written policy builds institutional knowledge, creates consistency which increases safety, and prevents schools (and parents ) from having to reinvent the wheel year after year.

Third, all food allergic students should be required to submit a one-page “Allergic Reaction Action Plan” signed by their doctor and their parents.

The difficulty, of course, with national or even district-wide standards is then ensuring that they are acted upon and enforced in a very concrete way on a school by school basis. The federal legislation pending in Congress has raised awareness levels tremendously, particularly in highlighting food allergies as a national health concern, so it is wonderful in that regard. However, the standards proposed are purely volunteer and again would need to be translated into concrete actions at the individual school level.

If you feel that the food allergy emergency readiness of your child’s school is lacking - what can you do as a parent (except change school districts or homeschool) to turn the situation around?

Where to begin!? This is a difficult question to answer in the abstract because there are so many possible scenarios. Start with a conversation. Calm, consistent, confident communication is the key. Come prepared not only with a good description of your concern, but also with multiple recommended solutions. If you’re truly starting from scratch, realize that you can’t go from 1 to 100 in a day and that everything you’d like to put in place can’t get implemented at one time. It’s a process. So, choose your two or three “must have’s.” For me, these were always (1) training for the teachers on basic food allergy safety and (2) easy and fast access to epinephrine. Locked doors or cabinets were a deal-breaker. Everything else, I could live with for the moment and work to change in the future, with calm, consistent, and confident communication! I know we hear it all the time (and I believe it’s one of FAAN’s mottos) that “education is the key”… and it is! This includes educating the entire school community. (For more suggestions, click here. In particular, the documents entitled “My Food Allergic Child is Starting a New School” and “My Child’s Classmate has a Food Allergy. What Should I Know?” are particularly relevant here.)

What are some good tips for parents of food allergic children for educating the classmates of their child and their families?

As with anything, I believe sticking to the facts and offering concrete suggestions on how to help always works best. Remember also that before our kids were diagnosed we may have known very little about food allergies and what we now know we learned over time, not all at once. Calm, confident, consistent communication.

Though I have never done this, I know many parents have successfully used FAAN’s PAL materials (including coloring books, story books, and videos) to educate their child’s classmates. For me, that education has always come as a byproduct of being present in the classroom for parties and in her friend’s homes for playdates, checking food, and being very open and matter-of-fact about Nina’s allergy in front of her peers.

This is part 2 of my interview with Food Allergy Hero and expert, Maria Acebal, founder of Safe@School Partners.

From my experience, school awareness of the severity of peanut allergies is increasing. But how well equipped are schools to accommodate children with multiple allergies? As a parent, how do you reach out and educate schools? What can you ask for — from the classroom teacher, the nurse, the cafeteria worker, the bus driver, the gym/music teacher? What is it reasonable to expect them to provide?

While it is wonderful that awareness of the peanut allergy has increased tremendously, it is often frustrating for parents of kids with multiple allergies, or with allergies to foods other than peanuts, to face what sometimes feels like an exclusive focus on this one food allergen (eg, the “peanut-free” lunch tables). It is therefore paramount that parents educate all school staff that supervise the child on the seriousness of all his or her food allergies. The one page “Allergic Reaction Action Plan” I mentioned earlier can help as it should have all food allergies listed clearly at the top.

As far as what is reasonable to expect, this again is a tough question! The strictly legal answer is that pursuant to Section 504 of the Rehabilitation Act of 1973, all schools that receive any form of federal funding (ie, all public schools and many private schools) are prohibited from excluding or otherwise discriminating against a student with a “disability” solely on the basis of that disability. What this means for students with life-threatening food allergies (generally a recognized “disability”) is that schools are required to provide a “free appropriate education” (“FAPE”) designed to meet the educational needs of that student as adequately as it meets the needs of nondisabled students. Often, a FAPE for food-allergic students will include the provision of “related aids and services” such as administration of medication, changes to the classroom environment, menu substitutions, or other health-related needs that require attention during the school day. (Similar protections are offered by the American with Disabilities Act which applies to all public schools and all private, non-religious schools).

Now, that still only begins to answer the question because, for example, the determination of what “changes to the classroom or lunchroom environment” are appropriate are usually made on a case by case basis, and some adjudicative bodies have answered this question differently, so it is hard to generalize. For example, the Office for Civil Rights in the Saluda School District (South Carolina) case, decided that an appropriate change to the school environment included eliminating all peanut products from the school’s menu. Most other cases I am familiar with did not go so far and included other changes such as having a table where the student could eat without the presence of food allergens.

At a minimum, I believe it is reasonable to expect that all adults who supervise your food-allergic child in school receive annual training on food allergy safety; that access to epinephrine at all times is secure and swift; and that reasonable steps to reduce the risk of allergen exposure are consistently applied.

This brings up the sometimes thorny question of what restrictions, if any, schools should have on foods that can be brought into lunchrooms or classrooms. As a food allergy educator, I remain agnostic on this question. With all the schools I work with, I tell them that whatever approach they choose, I will recommend how to implement safety protocols accordingly. So, for example, for schools that are “peanut free”, I stress the importance of having a checking mechanism that ensures food labels are read carefully each and every day to ensure that the environment is in fact “peanut free.” I also stress the importance of clarifying to the entire school community – in writing - what “peanut free” means so that everyone is on the same page and parents of food-allergic kids can plan accordingly. Does “peanut free” mean that no products with peanuts as ingredients as well as no products that “may contain peanuts” or are “processed in a facility with peanuts” are permitted? Or, does it mean that the school will not serve peanut products, but children can bring in peanut products from home for individual consumption? Or, does it mean . . . . You get the point: clarification and control mechanisms are key.

For schools that have no restrictions on foods that can be brought in to the classroom or lunchroom, I stress the importance of reducing the risk of cross-contamination from table surfaces and hands and on being vigilant of the foods made available to the food-allergic child for consumption, particularly the very young children.

Within the school environment, what poses the greatest risks for the food allergic child — e.g. the cafeteria? The bus? Contact reactions on a playground or a shared computer? Something else? Are there ways that we as parents can work with schools to reduce these risks? How should we educate our children to prepare them to recognize and minimize risks?

I believe FAAN sponsored a study that showed that the primary source of risk for reactions in school was classroom celebrations. As parents advocating for our children, we must remember that the most serious reactions almost always occur from ingestion. While a few very serious contact reactions have been discussed in the medical literature, all the leading allergists I’ve spoken with, including Dr. Woods of Johns Hopkins and Dr. Burks of Duke, stress that the greatest risk to kids come from ingestion. (Of course, with younger children especially, who often put their fingers in their mouths, eyes and nose, contact with the hands can lead to ingestion). So, there are levels of precaution: first and foremost, we need to put in place steps to ensure that the food our children will eat in school, be it for a classmate’s birthday celebration or for snack, are allergen-free (this includes food free of any cross-contamination, which is why I advise schools to limit food to be shared in the classroom to store-bought food with ingredient lists since home-baked items are more likely to run the risk of cross-contamination problems). Second, we can then worry about the contact issue by teaching schools that cleaning thoroughly with hand wipes or soap and water after eating are important ways to reduce the risk of cross-contamination via hand and table surfaces.

As our children get older, they will begin to recognize the risks for themselves. I believe the most powerful teaching tool is for us parents to model the behavior we want our kids to adopt. For me, this includes teaching her the right balance between caution and overreaction – I want her to have a healthy respect for the seriousness of her allergy but not a crippling fear of it. So, while I admit that I was tempted to wipe down all the monkey bars and slides with handwipes at the local park, especially when the food allergy diagnosis was still new, I resisted the urge because I did not want my daughter to fear going down a slide or sitting on a swing. That said, I do ask the counselors at my daughter’s camp to please make sure that her classmates who eat peanut butter for lunch wash their hands before going out for recess.

From time to time, I would like to recognize and celebrate individuals and organizations in the food allergy community whose hard work and advocacy make the world a safer and better place for our children.

In this spirit, I would like to recognize Maria Acebal, the founder of Safe@School Partners.  I admire Maria tremendously, because she taken the passion and specialized knowledge that only a food allergy parent can acquire and harnessed it to help all food allergic children by teaching schools, camps, and daycares how to manage food allergies in their respective environments.

Today’s post, conducted in interview format, is an introduction to Maria Acebal and Safe@School Partners.  This post will continue in two additional parts next week where Maria will address questions on managing multiple food allergies in the school setting and offer guidance on how to work with schools and families of your child’s classmates to keep your child safe.   She will also address local and national standards for food allergy management in the schools.  I hope this is useful as you start to meet with your children’s teachers, principals, and nursing staff in the weeks ahead.  Also, if you haven’t yet had your initial meeting with the school team, you may want to check out the Safe@School Partners Food Allergy Discussion Guide.  I found it really helpful to structure my thoughts.

So, without further delay … here is an introduction to Maria Acebal.

Can you tell me a little bit about yourself and the work of Safe@School Partners.  Why did you found it?     

My older daughter, Nina (age 6), is anaphylactic to peanuts.  As your readers know too well, that means that she can have a life-threatening allergic reaction if she ingests even a trace amount of peanut protein.  For many food allergy families, keeping kids safe at school is one of the most difficult and stressful challenges we face.  For teachers and schools as well, it is sometimes hard to know how best to manage students’ food allergies.  I wanted to find a way to make it easier for everyone:  the teachers, the administrators, the kids, and the parents.  The missing link, it seemed to me, was a standardized curriculum and training program for all school personnel.  I set out to create the service I wished I had had access to when I was enrolling my daughter in preschool and then later in kindergarten.  How different my meetings with her teachers would’ve gone if they had said at the onset “The school provides us with annual training on (a) how to reduce the risk of allergen exposure; (b) how to recognize the symptoms of an allergic reaction; and (c) what to do in case of a medical emergency”!  I would have walked out with a level of confidence in my child’s safety that unfortunately often takes years to achieve when we work individually, each parent having to educate on an ad-hoc basis new teachers and administrators, year in and year out.

You asked about my background.  It is quite unusual and circuitous given the work I am doing now!  I am an attorney.  I practiced law for five years before joining a business consulting firm and turning my focus to strategic business analysis.  Now I’ve left both the legal and the business world for the non profit sector, though I find I draw on both experiences often in running Safe@School Partners, Inc.

What are some of the critical components of the training program you provide for schools, camps, and daycares?  How has the state of awareness/readiness changed among school administrators and teachers since Safe@School Partners was founded?

I created the training curriculum – the FoodAllergy Smart™ Training Program — with educators’ needs in mind and in accordance with three guiding principals:

The information must be targeted and actionable:  it is critical to separate the “must know” from the merely “interesting to know” and, for each and every fact conveyed, a corresponding action step should be made clear.  Educators have a million and one things to think about in addition to food allergies in the classroom:  training is most effective when you’ve answered ahead of time “how is each and every statement I make relevant to an educator in fulfilling his or her day-to-day responsibilities?”

The style and tone are as important as the content.   A live presenter that is engaging and approachable makes the information easier to absorb and retain as opposed to solely reading information in handouts or manuals.  In addition, the tone must reinforce that the purpose is to educate and impart confidence, not to scare.

Follow-up increases impact.  Having a resource to call on for additional guidance after the initial training increases the likelihood of lasting impact.

All presentations are structured around the four “CARE™” topics:  “C” – Comprehending the six “must know” medical facts; “A” – Avoiding the food allergen; “R” – Recognizing a reaction; and “E” – Enacting Emergency protocol.

With respect to the response to our FoodAllergy Smart™ trainings, the best way to express it is probably to share just a few of the comments we’ve received from the now over 1,000 educators that have participated:

How do the risks in the camp environment compare with those in the day care or school environments?  Are there any transferable lessons from one environment to another? Are there any unique challenges that food allergic parents should think about for the summer?

The risks are very comparable from one setting to another in that in camp, school and daycare, you have adults with varying degrees of “food allergy smarts” caring for many children in an environment that contains allergen-exposure risk.  Camps can pose a heightened challenge, however, because often staff members are teens versus adults and the level of supervision and control is more relaxed as compared to the school year, particularly when the setting is an outdoor campsite.   Parents should pay close attention to how accessible epinephrine is to their child throughout the camp day as well as to how well trained all staff members are who are supervising their child.

One of my seeming obsessions is to provide my daughter with “treat foods” that make her feel like any other kid.  Cupcakes - check.  Salty snacks - check.  Sugary concoctions (cotton candy and slurpies) - check, check.

The two treats that have evaded me for a long time were chocolate bars and good looking pizza.  But apparently the good folks at Whole Foods are going to fix that for me.

I just saw a press release from Enjoy Life Foods that they are introducing dairy-, nut-, and soy-free chocolate bars.  Sounds too good to be true, doesn’t it?  I’ve tasted their chocolate chips before.  And they’re pretty good.  So I’ll be watching the shelves at Whole Foods for this product.  It’s going to make Halloween a whole lot easier/sweeter at my house.

My other new find is a generic Whole Foods brand pizza crust (365 Organic Pizza Crusts) that does not appear to have dairy, eggs, nuts, or garlic.  My daughter loves that it looks like pizza that other kids eat.   I loved that she didn’t have an allergic reaction to it.  And the whole family liked the taste (always a bonus).  We topped ours with safe spaghetti sauce and tofutti cheese.

Bon apetit!