Kids Food Allergies Blog

Apparently, we’re not the only food allergic family who has had difficulty with the airlines.

This trouble even extends to esteemed members of the Senate.

At the 5/14 hearing of the Senate Health, Education, Labor and Pensions Subcommittee on Children and Families, Sen. Chris Dodd (D-CT) recounts:

(W)e fly a lot, obviously, going back and forth to Connecticut a lot, and without naming any particular airlines, the difficulty sometimes of getting them to understand that peanuts — calling ahead of time, stopping at the gate before you get in, getting on the plane, invariably the flight attendants have not been told by anybody, so they then look at you with annoyance.
We actually had a flight one time where the flight attendant told us we had to get off the plane, because they hadn’t — every other flight they serve peanuts on. We were in Phoenix, Arizona on our way back home to Connecticut — a long day with a 2-year-old — well that’s not a 2-year-old — a 1-year-old and said we had to get off the plane, because that was the choice. Needless to say, we stayed on the plane and there were no peanuts served, but nonetheless it took me battling to do it. I shouldn’t have to battle this to let it happen.

My family’s not planning to fly again any time soon.  But for those of you who are, FAAN posts useful information on flying with food allergies:

Based on correspondence with airline representatives, FAAN has concluded that the following airlines do not serve individual packages or bags of peanuts:

Domestic: Air Tran, American, Jet Blue, Northwest, United, US Airways, USA 3000
International: Aer Lingus, Air France, British Airways, El Al, JAL, KLM, Lufthansa, SAS, Singapore Airlines

I wish someone would talk to Continental.

In the new edition of Newsweek posted just hours ago, I read a story called “A Plea for My Daughter.” It’s written by a mom whose 5 year old daughter was just diagnosed with a severe peanut allergy. The author is struggling with the same issues that many of us face: what to say to other parents, how to deal with people’s insensitivity, and how to help her daughter navigate the physical dangers and emotional challenges that accompany this diagnosis.

I wish I had easy answers for her.

The best advice I have seen comes from the testimony of two veteran food allergy moms at the 5/14 hearing of the Senate Health, Education, Labor and Pensions Subcommittee on Children and Families, chaired by Sen. Chris Dodd (D-CT).

Teresa Walters: I think my biggest piece of advice for other parents would be, don’t let other people tell you how to react to your child’s food allergies. Don’t let them tell you that you’re being overprotective.

Chris Dodd (D-CT): We had a woman behind us one day (on a flight) eating a peanut butter thing, and I said, I apologize, profusely, and explained that my daughter has a severe reaction, potentially, to peanut butter, and her comment was, “What’s she going to break out in a little rash?” And I almost felt like saying, look — maybe I shouldn’t bother in a sense — that reaction of letting other people, sort of, cause you to be less than vigilant. So it’s a good piece of advice.

Colene Birchfield: I would echo her sentiment…(T)he key piece is to trust yourself and only yourself and educate yourself as much as you can, try to educate everybody around you. You may ruffle some feathers along the way, but it’s necessary. You must be the advocate for your child.

Good advice for us all to keep in mind.

Lots of yummy kid foods contain breadcrumbs: meatballs, casseroles, and best of all — chicken croquettes.  Who knew how difficult it would be to find milk-free breadcrumbs.  We used 4C kosher breadcrumbs for years, until 4C stopped making them.  Since last August, I’ve looked for an adequate substitute and failed miserably.  Some were too coarse, others were seasoned.  Whole wheat breadcrumbs were a non-starter in my household.  I even tried making my own breadcrumbs and broke the family blender in the process.  This week — I finally found vegan breadcrumbs that make my family smile: Edward & Sons Lightly Salted Organic Breadcrumbs.  In appreciation of great tasting vegan breadcrumbs, I am posting my favorite “birthday party” recipe — since I have not met anyone ages 2 to 82 who doesn’t LOVE these.   I hope you enjoy them.

Chicken Croquettes

5 T. vegan butter (divided use)
3 T. flour
1/2 C. soy milk
1/2 C. chicken broth (do not use a low sodium brand)
2 C. finely chopped cooked chicken
1 C. milk-free bread crumbs
1/4 t. salt
2 t. baking powder, 3 T. water, and 3 T. canola oil mixed together
3 T. chopped parsley (optional)
1/4 C - 1/2 C. cornflake crumbs

1. In a medium-size saucepan, melt 3 T. vegan butter over medium heat.  Add flour and cook, stirring, for 1 to 2 minutes, without browning.  Gradually whisk in soy milk and broth, stirring constantly, until smooth and thick.  Remove from heat, let cook for 5 minutes.
2. In large bowl, combine chicken, bread crumbs, salt, baking soda/water/oil mix, and parsley (if you’re using it).  Mix well.  Pour in sauce.  Mix.  Cover and refrigerate for at least 2 hours, until set.
3. Preheat oven to 350 degrees.  Pour cornflake crumbs into shallow dish.  Roll chicken mixture into balls and roll in cornflake crumbs to coat.
4. Arrange croquettes in a greased baking dish.  Melt remaining 2 T. vegan butter and drizzle over croquettes.  Bake 30 minutes until golden brown.

As parents of food allergic children, we need to walk a fine line between advocating to keep our children safe and alienating people whom we need as allies by seeming too extreme.  As I prepare to meet with the principal of my daughter’s new school, I wonder just how much I can ask from her new principal, teacher, and the parents of her classmates.

I am reminded by one of my readers how asking for too much can border on the absurd.  Richard R posted this provocative comment below:

I’ve run into absurd extremes before. Our daughter’s pre-school sent out a letter that since they had a child at the school who had a sibling with a nut allergy who WASNT at the school, no child attending school would be allowed to eat peanuts at HOME, let alone at the school. In other words, No peanuts in 3 degrees of separation from the allergic child.
There was an outcry and it was rescinded. It’s stuff like that that makes the issue seem silly and overblown.

Richard raises an interesting point.  Based on the facts Richard presents, I would argue that the parents aren’t helping their child, and they certainly aren’t helping our broader cause.   I’d rather go the humbler route.  This is what I’m asking for.  Please:

1. don’t allow children to bring or eat peanuts in the classroom;
2. have children wash hands after eating;
3. don’t do art/science projects which contain dairy, peanuts, tree nuts, or eggs; and
4. try to provide advance notice of birthday celebrations so that we can provide a special treat for my daughter.

But what seems perfectly reasonable to me may seem totally outlandish to others.  That seems to be Trace Adkins’ experience.  We learn from Celebrity Baby Blog that when asked whether people are sensitive to the severity of his daughter’s allergies, Adkins says:

People seem to not really care.  I was doing a radio-show interview the other day, and a listener called in and said, “I was told that I couldn’t bring something into my kids’ school because other kids were allergic, and that’s infringing on my freedoms.”  I thought, “You idiot.  Bring something else.  Are you seriously suggesting that you should have the freedom to kill my kid?”

If you have a child entering kindergarten (like me), or are changing schools, I found a really helpful website, Safe@School Partners, that offers a discussion guide for approaching food allergies with those responsible for keeping your child safe at school.   Of particular interest to me was the sample letter from the principal to parents of your child’s classroom.  It would need a bit of tailoring to meet our circumstances, but I think strikes the right tone.

I am getting really stressed that my unborn baby is going to be even more allergic than my firstborn.  But getting myself all worked up may end up contributing to the problem.  According to a new study (hat tip ModernAllergyMom), stress may also increase my unborn baby’s risk for allergies and asthma later in life.

I found ModernAllergyMom’s story lending credence to this theory very interesting but slightly disheartening, given my situation. But I contrast her story with that of a friend whose children attend my daughter’s preschool . Her firstborn is her most allergic. Her middle child is less allergic than her first. And her youngest (who just turned two a few weeks ago) has tested completely allergy-free.

I just don’t know how this is going to turn out. But I guess I really shouldn’t stress about it.

Just as I recognized Trace Adkins for his food allergy advocacy efforts in the reality TV/music realm, I would likewise like to applaud politicians who are championing food allergy awareness at the state and federal levels.

First, I would like to acknowledge Connecticut Sen. Christopher J. Dodd and his wife, Jackie Clegg Dodd. Their food allergy advocacy is more than political. It is also personal. Their six year old daughter, Grace, is severely allergic to peanuts, tree nuts, eggs, citrus, sesame, fish and shellfish. Grace and her family have been through anaphylaxis 4 times. As a result, Dodd has authored and is championing the Food Allergy and Anaphylaxis Management Act in the Senate (S. 1232) to establish uniform and consistent food allergy policies in our nation’s schools.

According to Dodd, important work is being done in several states, but a more comprehensive national plan is needed. “Connecticut, I am proud to say, was the first state in the country to enact school-based guidelines concerning food allergies and the prevention of life-threatening incidents in schools…Several other states have passed laws developing school-based guidelines concerning food allergies including (Tennessee), Massachusetts, Vermont, New Jersey, Arizona, Michigan and New York. But, without Federal guidance, a child’s health and safety may be protected in one school but not in another. Policies may vary even among schools within the same school district.”

Dodd’s senate companion to H.R. 2063 differs from its House counterpart in one critical respect: it provides for federal resources to implement legislative and policy directives. Dodd speaks directly to the importance of federal funding for this plan, “Many of our school districts lack the funding necessary to implement a food allergy management plan so if we are going to protect the health and safety of our children, we must provide an opportunity to make funds available to them.”

Also of interest one of the bill’s 11 co-sponsors: Sen. Hillary Clinton. While Senator Dodd’s reason for championing the legislation is clear, Senator Clinton’s link to food allergy advocacy is less apparent. Perhaps she has a personal link to our community as well: I was surprised to learn from a 1992 NY Times Article that Bill Clinton has had skin tests that revealed moderate beef and milk allergies. Kinda makes me wonder how he used to eat at McDonalds.

On the state level, I would like to commend Illinois first-lady Patricia Blagojevich who, earlier this month, kicked off a new statewide education campaign, “Ask Before You Eat,” designed to prevent unintentional and potentially-life threatening harm to children with food allergies. This campaign was inspired by the State of New Jersey’s “Ask Before You Eat” initiative. Hopefully, other states will soon follow the good example of New Jersey and Illinois and begin statewide education initiatives of their own.

If there are other federal or state politicians who deserve recognition for food allergy advocacy or education (particularly at the school level), please leave a comment here to tell us about their efforts.

Meantime, here’s Dodd and his family.

I have never been, and probably will never be, a big Rush Limbaugh fan.

So you can imagine my skepticism in opening this link to his comments today on peanut allergies — fearing what he would say and how his followers would respond.

I was surprised and heartened by his response.  According to Limbaugh, this issue is real and can be deadly if not dealt with in time.   He highlights one of my deepest fears as a food allergy parent: mean kids using food to bully and harm others.

Contrast Limbaugh’s position on peanut allergies with this article from a steadfastly liberal magazine, Harper’s: “Everyone’s Gone Nuts: The exaggerated threat of food allergies.”  Never have I read an article that got the whole food allergy issue so totally and completely wrong.

I usually love Harpers — and cringe at Limbaugh.  Here is a case where the exact opposite happened.  Seems ironic that the usually libertarian right wants to help us to protect food allergic kids, and the left thinks that this type of protection is excessive and unnecessary.  In this case — the left got it wrong, and the right got it right.

So, from this reliable Limbaugh foe: mega dittos to Limbaugh for being so right on this very important issue.

We used frequent flier miles for our trip — and ended up flying to California on Delta and returning home on Continental. When my husband and I were reserving our flights — we told both the Delta and Continental customer service agents about our daughter’s life threatening peanut allergy. Both airlines told us that there was nothing they could do about food brought aboard the airplane (which we kind of assumed). Neither airline offered further guidance/assistance.

But Delta really came through for us. After the stewardess announced the snack (peanuts, pretzels, or cookie) — I told her about my daughter’s allergies. She responded quickly and kindly, and worked with the other flight attendants to create a 3 row up, 3 row back peanut-free zone. She also advised us to alert the staff on our connecting flight ahead of time, and that they would do the same thing. And they did. And, we were very appreciative.

Continental was an entirely different story. When my husband called to reconfirm our flights, he told customer service about my daughter’s allergies. Their curt response, “There’s nothing we can do. Bring your medicine and good luck.” I thought we might have better luck at the airport. So, when I made inquiries at check-in, I was told “we do not make any food restrictions on flights.” To which I replied, I know you can’t limit customers from brining nuts onboard — but you can control what you serve as snacks. Again, I was answered with “we do not make any food restrictions on flights.” Luckily — on the first leg of our Continental trip, they were serving “lunch,” and did not offer peanut snacks. But we had to transfer in Cleveland and were taking a regional propeller jet back to Dulles. Because it was one of those tiny planes (small space/recycled air)– I asked my husband to please approach the gate and ask them to reconsider serving peanuts. He did. And he was asked why we booked these flights for a food allergic child. Then, they had a change of heart (I guess), and conceded to not serve peanuts on board the flight. But not before presenting us with the following disclaimer. I don’t think I’ll fly Continental again for a really long time. At least, not with my daughter.

Lets face it. It’s really difficult to travel with food allergic children. Especially if you want them to eat more than crackers for the duration of your trip.

We knew this trip would be easier than many others. We were going to San Francisco: a land filled with Whole Foods, Trader Joes, and plenty of fresh produce. We would also have access to cooking facilities –we were visiting my sister and staying in a hotel with a refrigerator and microwave. Still, I was nervous — this would be our first flight with our daughter since her severe peanut allergy had been diagnosed. (More on how this turned out in my next post.)

The first challenge: the flights. So many challenges, not sure where to begin. Perhaps with the person sitting directly in front of us shelling pistachios. Or the person to my left on my outbound flight who complained that the stewardess couldn’t serve his wife peanuts while I served my daughter a peanut butter and jelly sandwich (which I explained, as kindly as I could, was in fact soynutbutter and jelly.) But equally vexing was finding 12 hours worth of food that we could travel with that would not require refrigeration. But we did OK.

The second challenge: the restaurants. Finding safe food in restaurants is always a challenge. Finding safe food that my daughter will eat is nearly impossible. One exception. Cucumber sushi. Boy, she ate lots of cucumber sushi. Also — hats off to the Whole Foods in Los Altos, CA for introducing me to a great new product for food allergic families on-the-go. O’Hana House fully cooked Organic Japanese Udon Noodles. Vegan. Microwaves perfectly in 2 minutes. Perfect for situations where you only have a microwave and a fridge.

The third challenge: lodging. Our hotel was great. One slight glitch. I found a pistachio shell on the floor. It started my mind whirling. What if there were other lingering allergens from former guests: between the seat cushions, on the tablecloth where other guests have eaten breakfast. It’s enough to make you crazy. We looked as best we could, removed visible offenders, and tried not to think about it. And it all turned out fine.

As summer travel season approaches — I wish you and your families safe and fun-filled travel adventures. If you have any food allergy vacation stories/tips to share, I’d love to hear about them.

Doctors and scientists are working hard to find a solution to peanut allergies. Two approaches look promising: oral immunotherapy and the development of an allergy-free peanut.

As I’ve written before, I am optimistic about oral immunotherapy. So is Dr. Wesley Burks, food allergy expert at Duke University Medical Center, an integral researcher at one of the five research centers conducting the oral immunotherapy trials. According to Reuters, Dr. Burks says that immunotherapy may be available within the next five years.

On to the allergy-free peanut. The good news at least two universities are doing groundbreaking work to develop an allergy-free peanut: N.C. A&T’s School of Agriculture and Environmental Sciences, through a United States Agency for International Development (USAID) grant, and the University of Georgia through a grant from the Georgia Commissioner of Agriculture. If these university research trials are successful, how might this work and how fast would this come to market? A University of Florida newsletter reports:

The next step would then be trying to find or create other stand-ins for the usual suspects of peanut allergens. If that were accomplished, then they would all have to be put together to produce a peanut plant that would replace those used by peanut farmers today.
“Don’t look for this to be something that you’ll see in the next twenty years or so,” said Peggy Ozias-Akins, a peanut genome researcher at the University of Georgia. “There’s a lot of genetics groundwork that we still have to lay before we even know if something like this can be done.

In addition to the long-time horizon, I am a skeptic of the allergy-free peanut. Why? I am guessing that it will be costlier than regular peanuts. Therefore, I would suspect that conventional peanuts will continue to be used by large-scale manufacturers in the products my daughter’s peers eat. So, even if there is a “peanut”-butter she will be able to eat — she will still be eating it by herself at a nut-free table while other kids enjoy their conventional peanut butter and jelly.

I guess five years isn’t so long to wait for oral immunotherapy. Just in time for my second child to enter kindergarten.