Kids Food Allergies Blog

Most parents of food allergic children have learned how to manage food allergies in the home. But what happens when your child leaves home, or when you entrust his/her care to others? Where and under whose supervision do you think an allergic reaction is most likely to occur?

• Under your supervision at a park, restaurant, or on vacation. I don’t worry so much about parks anymore. Over many years of playing at the park, we have learned some tricks. (My favorite tip: use your own picnic blanket instead of picnic tables. Or bring a vinyl tablecloth if you want to use a picnic table.) Restaurants are tough. I’ve heard some real horror stories. We stick to restaurants we’ve been to many times (and know what’s safe on the menu) - and always remind the kitchen about food allergies when ordering. For practical, smart tips to minimize the risk of food allergy reactions in restaurants, I recommend that you check out the post, “Top 8 Tips for Eating Out with Allergies” on the About.Com Food Allergy Blog. Vacations are more complicated. More on that soon. We’re headed to San Francisco in a few weeks.
• Your spouse. The post, “Do You Trust Your Husband” in the blog, Every Day With Food Allergies, had me rolling on the floor laughing. I’m sure many of us can relate. It took me a good four years to let go — but now that I do, it’s pretty great for everyone. I pack up safe food and they spend the day at the park, the baseball stadium, the bowling alley, or wherever else they want to go.
• Babysitters. In her post, “Leaving Your Food Allergic Kids With A Sitter,” ModernAllergyMom recently asked her readers how they manage to leave their kids with someone else. Given that I’ve only used one babysitter in 4 1/2 years — I’m not a good one to ask. But since my child and the sitter would be inside my house, which is allergen free, I could probably lighten up on this.
• Grandparents. Haven’t left her alone at their house either. Okay, so I have some control issues. But I don’t think I’m alone in this. Many parents of food allergic children have justified concerns about leaving food allergic children with grandparents — just ask Dr. Robert A. Wood.
• Friends. Birthday parties and playdates are opportune venues for food allergy attacks. As a parent, part of you feels the need to hover - but part of you wants to let your child be a kid. The first time my daughter was offered food at a friend’s house (when I wasn’t by her side) — she was 2 1/2. Instead of eating it, she ran to my side in tears to show me the offending tortilla chip. The second time a friend offered her food (milk chocolate candy made in a factory that processes nuts) - she had been better coached in how to respond and she had more experience dealing with her allergies at preschool. Without tears, she simply told her friend that she couldn’t eat the chocolate because she might be allergic to it. Atta girl! I still hover at birthday parties - can’t help myself.
• School. There are so many fronts for concern: Supervised activities (snacks, lunch, buses). Or those pesky unsupervised activities: peers innocently (or not so innocently) offering your child forbidden foods or exposing your child to allergens while not in the presence of adults. Some optimists feel that better education will reduce these threats. In the realm of supervised activities, I wholly agree. I am less convinced about the role of education in the unsupervised realm.

Realistically, a reaction could occur in any of these scenarios — and many others. But it gets tiresome not being able to trust anyone. And as she grows more mature and is better able to take ownership of her allergies — I imagine these fears will lessen. Perhaps others will take their place. Like sleep away camp, dating, and prom.

Any tips for handling any of the situations listed above? Anything I’ve left out? What do you fear most?

If you’re reading this post, I imagine you’ve heard about the “allergy desensitization studies” or “oral immunotherapy studies” that are taking place at several major medical facilities across the United States.

• Mount Sinai School of Medicine, New York; Principal Investigator: Hugh Sampson, M.D.
• Johns Hopkins University School of Medicine, Baltimore; Principal Investigator: Robert Wood, M.D.
• Duke University School of Medicine, Durham, NC; Principal Investigator: Wesley Burks, M.D.
• University of Arkansas Children’s Hospital Research Institute, Little Rock; Principal Investigator: Stacie Jones, M.D.
• National Jewish Medical and Research Center, Denver; Principal Investigator: Donald Leung, M.D., Ph.D.

Some studies focus on milk or eggs. Others, peanuts. From what I understand, in these trials, allergic individuals ingest increasing doses of an allergen. As they are able to safely ingest more of the allergen, the immune system is strengthened to better tolerate the allergen and protect against future allergic reactions.

Sounds like the same concept as an allergy shot. And preliminary findings of these trials seem encouraging, though the results are not yet conclusive. So why am I so reluctant to consider it? If an allergy shot goes bad — you might be uncomfortable for a couple of days. But food allergies seem like an entirely different (and more severe) animal. And the reactions can be much more rapid and severe, with more dire consequences.  My daughter’s reaction to peanut is so high that her allergist no longer feels comfortable skin testing her for fear of sending her into anaphylaxis. Why on earth would I purposely ask her to swallow peanuts?

On the other hand - maybe the severity of her allergic reactions makes this type of treatment even more important and dare I say necessary. As she makes her way in the world, inadvertent exposure to her allergens seems nearly inevitable. Even if oral immunotherapy can’t “cure” her allergies — but rather lessen the severity of her reaction to them — it might be worthwhile to consider.

The results of 2 clinical trials seem illustrative.

Johns Hopkins conducted a trial of 11 young children and teens (ages 6-17) with proven milk allergies. At the beginning of the study, all 11 kids exhibited symptoms after ingesting 40 milligrams of milk protein. At the end of the trial, the researchers gave the kids an 8,140-milligram challenge: 10 out of 11 passed.

Duke conducted a trial of 20 peanut-allergic children who were initially given the equivalent of 1/3,000 of a peanut. Most were eating a peanut a day within six months with little reaction. By the end of the Duke peanut desensitization trial — 19 out of 20 (95%) participants were able to tolerate 8 grams of peanut protein, or the equivalent of more than 13 peanuts.

Maybe this idea isn’t so crazy after all. Or is it?

If anyone has direct experience with these trial studies, please share your experiences here.

Like many parents of food allergic kids, I don’t buy many processed or manufactured goods. They contain, or might possibly be cross-contaminated with, allergens. When I have no choice but to buy commercially manufactured products, I cringe at disclaimers such as, “made in a facility that also manufactures milk, eggs, peanuts, and tree nuts.” Even worse, “made on shared equipment with milk, eggs, peanuts, and tree nuts.”

Over the years, I have seen disclaimers on (or contacted customer service departments of) most major brands of soy milk and rice milk. Invariably, each manufacturer says its products are produced in facilities that also process peanuts, tree nuts, and milk. But unless I’m going to start making my own calcium-fortified milk substitutes –which is actually harder than it sounds, by the way– I have little alternative to purchasing soy milk or rice milk that is manufactured in facilities that also process many of the allergens to which my daughter is so severely allergic.

Today’s recall of single serving size of chocolate Silk Soy milk is a wake-up call to me. These single serving size soy milks had seemed perfect for snacks on-the-go: school, playground, pool, car, airplane. I might reconsider substituting water bottles or juice boxes in those situations, and reserve the soy milk for shared mealtimes under closer parental supervision.

If you know of a brand of soy milk or rice milk that is produced in a dairy-free, nut-free facility, please drop a comment. I would be extremely interested and grateful to know more about it.

For those of you interested in the recall announcement, click here:

Allergy Alert on Undeclared Dairy in 11-Ounce Single Serve Silk Soymilk Chocolate Flavor in Plastic Bottles

Wednesday April 23, 4:14 pm ET

MOUNT CRAWFORD, Va.–(BUSINESS WIRE)–WhiteWave Foods Company is voluntarily recalling 11-ounce plastic single serve bottles of Silk Soymilk Chocolate Flavor because it may contain undeclared milk protein. The individual bottles are printed with both a “use by” date of May 7, 2008 (printed as 05 07 08) and a Universal Product Code (UPC) of 2529360028. Consumers can find this information on the back of the individual bottle.

People who have an allergy or severe sensitivity to milk protein run the risk of a health problem or illness if they consume this product. Some reactions have been reported….

Through this blog, I have expressed concern over schools and camps which discriminate against food allergic children or set policies that compromise their safety.

But recent news events raise an issue I fear even more: kids bullying food-allergic kids.

In Lexington, Ky ., an eighth-grade student is facing felony charges for allegedly sprinkling peanut butter crumbs into the lunchbox of a student whom he knew to be peanut-allergic. His case will be tried in the juvenile criminal justice system.

ABC News reported about a 14 year-old in Mastic, N.Y. who has received numerous food allergy-related threats from peers — bullies planning peanut parties at lunch to make her face blow up, bringing peanut butter sandwiches to make her leave their cafeteria table, threatening to put peanut butter on balls in gym class, opening up peanut butter cups in the back of the classroom. These are my worst nightmares! To make the situation worse — this abuse isn’t coming from strangers. It’s coming from kids she grew up with — had playdates and birthday parties with — who think her allergies are made up.

Her parents have fought back by filing a 504 plan, under which her food allergy is treated as a disability and certain safeguards are put in place to keep her safe. And if kids bully her, it’s considered a discrimination against a disability. But since these threats are verbal threats rather than physical assault, they are harder for teachers to recognize and enforce consequences.

I just don’t know how to keep my daughter safe from food allergy bullies. If I could get away with sending her to school looking like this, I just might give it a try.

If anyone told me this story, I would think they were a little loopy. But since it’s happening to me right now, how can I question it. Right?

I was a milk-allergic baby. Outgrew it by age 1. Diagnosed with a penicillin allergy as a baby. Not sure whether that’s still true or not. Other than that — no signs of allergies (seasonal or food) until my late 20s, when I would have mild discomfort from time to time during the fall.

Fast forward to pregnancy one. Out of nowhere — spring allergy season was just terrible. I was completely non-functional. Ringing ears, scratchy throat, sinus headaches, and sinus infections. Since I had never experienced this before, I was completely unprepared. In retrospect, I feel I should have known that I was carrying a highly allergic child.

In the five years between pregnancies one and two, seasonal allergies have continued (both fall and spring) — but in a much milder form.

Fast forward to pregnancy two. Spring allergy season has not been particularly kind. But I have had less trouble. (And more Zyrtec.) But allergies have manifested themselves in a new way: eczema. I have never had eczema before — but I have had two severe bouts of eczema since this pregnancy began, both of which seem to be triggered by eating dairy. This seems very strange to me — since I have only been dairy-free for 3 1/2 years. Before that, I was a total dairy-junkie/addict.

I was concerned when my daughter had eczema as a baby. Now that I have lived through it (and have been trying to crawl out of my skin for about a week) and know how horrible it feels — I desperately want to shield baby 2 from this discomfort. So, I’m eliminating dairy from my diet. Even outside the house when my daughter is in school. I must admit, I feel a little sad. And worried, that it won’t be enough.

If any of you have had experiences with eczema during pregnancy, please drop a comment. Did your babies turn out to have seasonal or food allergies? Would love to know whether I’m alone in this.

Question for those of us with food allergic kids in public schools, or about to enter public schools: Is the passage of H.R. 2063 a reason to celebrate? According to a bill summary, H.R. 2063, The Food Allergy and Anaphylaxis Management Act of 2008, directs the Secretary of Health and Human Services, in consultation with the Secretary of Education, to develop a voluntary policy for managing the risk of food allergy and anaphylaxis in schools.

H.R. 2063 requires the Secretary of Health and Human Services to develop and make available to local educational agencies a policy to manage the risk of food allergy and anaphylaxis in schools to be implemented on a voluntary basis only. Directs that such policy address: (1) a parental obligation to provide the school with information regarding a student’s food allergy and risk of anaphylaxis; (2) creation of an individual health care plan tailored to each student with a documented risk for anaphylaxis; (3) communication strategies between schools and emergency medical services; (4) strategies to reduce the risk of exposure in classrooms and common areas; (5) food allergy management training of school personnel; and (6) authorization and training of school personnel to administer epinephrine when the school nurse is not immediately available.

The Food Allergy and Anaphylaxis Network (FAAN) considers the passage of this bill , sponsored by Rep. Nita Lowey (D-NY), to be a “wonderful first step to ensuring that the 2.2 million school-age children with food allergy are safe at school.” They further claim that, “If passed, FAAMA will provide schools across the country with uniform guidance on how to create appropriate management and emergency plans for children with food allergies.”

While I laud these objectives, I’m skeptical that this bill will accomplish these goals.

1. The bill is voluntary. In section 5, “Nothing in this Act or the policy developed by the Secretary under section 4(a) shall be construed to require a local educational agency or school to implement such policy or guidelines.” That’s problematic. If schools don’t want to work with parents to implement food allergy action plans for emergency situations, that’s OK? And, a camp can reject your child because of his/her allergies (or refuse him or her to bring an epi-pen to camp)? I share the sentiment of the Breeding Imperfection blog that HR 2063 “is not nearly as interesting” because, frankly, this legislation will not do anything. But it would be really helpful if some legislation could be implemented that would. As she writes, “Mothers like me already do the informing and educating of the schools. Many of us start from scratch, with wholly - and dangerously - ignorant educators … With parents carrying the bulk of the burden, it would help a lot to see this process normalized a bit.”

2. State law supercedes federal legislation (see section 4.2.c). This is a variation of point 1 — but if state and local laws are more lax than the federal guidelines outlined in this legislation (or by DHHS) — then food allergic children are no better off than they were before the passage of this bill. It is precisely in those jurisdictions with policies that disadvantage food allergic students who most desperately need strong federal legislation to protect their safety and rights.

3. There is no money behind it. When this bill was first introduced (April 26, 2007), there was an appropriations authorization provision ($30,000,000 for fiscal year 2008 and such sums as may be necessary for each of the four succeeding fiscal years). This provision was stricken from the version that passed the house April 8, 2008. Not that this matters that much — the power is in appropriations, not authorizations. Actually, taking the appropriations down to zero makes sense since the bill is completely voluntary. If this bill were to make a difference, it would need to be mandatory and have money behind it.

4. I’m really glad to live where I do. I haven’t yet met with my daughter’s principal, but where I live (in Fairfax County, VA), I am optimistic. There seems to be a fairly comprehensive county-wide food allergy policy, and a highly organized mechanism in place for managing food allergies. They post several allergy/anaphylaxis responsibility checklists, which I found interesting:

• Responsibilities of the Parents or Guardians of a Student with Food Allergies/Anaphylaxis
• Responsibilities of the Student with Food Allergies/Anaphylaxis
• Responsibilities of the School Administration
• Responsibilities of the School Public Health Nurse
• Responsibilities of the Classroom Teacher
• Responsibilities of the Food Services Manager
• Responsibilities of School Transportation

The bill goes to the Senate next. We’ll be watching closely.

I just noticed that Chabad posted its allergy-free Passover recipes. As promised, I have posted the link for those of you who are interested. But, honestly, none of those recipes really excited me. So, I’ve gone elsewhere for inspiration.

The most promising Passover recipes I’ve found is from the folks at VegSource. They offer Ashkenazic and Sephardic Seder menus, and a whole list of desserts that remind me of my non-vegan days. Eggless Macaroons? Count me in! In case you have trouble following the link — here is an adaptation of their macaroon recipes (for those who like chocolate and can’t eat nuts)

Festive Macaroons
Adapted from No-Cholesterol Passover Recipes by Debra Wasserman

• 1 cup shredded coconut
• 2 ripe bananas
• 1/8 C. cocoa (optional)

Preheat oven to 350 degrees. Blend ingredients together. Form pyramids on a cookie sheet. Bake at 350 for 20 minutes.

Some of their other mouthwatering deserts include: brownies, no-bake chocolate matzo roll, and Passover apple crisp. I am also eager to try the eggplant matzo mina recipe. I tried the Russian potato mushroom croquette recipe (same recipe, another source) a few years ago — and liked it a whole lot. I am also entertaining the idea of trying the Kneidlach recipe instead of making matzo balls. Or maybe I’ll make both, to figure out which my family likes better for next year.

Ruth’s Eggless Kneidlach
From The Lowfat Jewish Vegetarian Cookbook by Debra Wasserman.

• 4 medium potatoes
• 4 cups or 1 quart water
• 1 1/4 cups matzo meal
• pepper to taste

Boil potatoes in water in a large pot for 20 minutes until tender. Drain potatoes and mash them in a bowl. Add matzo meal and pepper. Knead dough until firm and smooth.

Fill a large pot 3/4 full with water. Bring to boil. Form smooth 2 1/2″ balls out of the mixture. Drop balls into boiling water. Cook for 20 minutes in covered pot. Do not overcook!! Carefully remove from water and serve kneidlach in hot vegetable broth.

In my web recipe round-up, a couple other recipes stand out.

Vegan Matzo Brie. Sounds good.

Vegan Passover Blintzes. Yummy. (Even if I left out the nuts, I would pass on their filling. Sounds too complicated. I think I will use a combination of tofutti cream cheese and fruit preserves.)

Pears N’ Honey Matzah Pie. Interesting dessert alternative. I’ve seen variations of this recipes with apples instead of pears too.

Happy Cooking!

The other day my daughter said, “Mommy, I think I’d like to go to camp this summer. All my friends are going to camp. Can I go to camp too?”

I dreaded this moment. Between her entering kindergarten in the fall and the new baby coming in August, I was hoping to enjoy every moment of this last lazy summer together — just me and her. But an even more compelling reason for my dread is that I am scared to let her go because I am uncertain how her food allergies will be managed.

What did we decide to do about camp? Well, we didn’t sign her up at any of the camps where her friends were going … they were too many hours/day (9 am-3pm) or too many weeks (6 weeks). We found a seemingly perfect compromise: a two-week camp at a local elementary school that is AM only (no lunch served). Wish us luck. If all goes well, perhaps I will be willing to let her go for longer next year.

But as I pondered our decision, I searched the the news wires and blogosphere for families with children slightly older than mine to learn how they handled this dilemma. The stories ranged from encouraging to disheartening. I point you to the extremes, and hope you find them useful as you make summer plans for your little ones.

I particularly related to the story, “Going to Sixth Grade Camp With Food Allergies,” posted in the blog Parenting A Child with a Food Allergy. The mother seems like a good role model for empowering her daughter to embrace challenges she was ready for, despite the mother’s own reluctance to let go. I also think her pragmatic approach, “to convey concern without using life threatening allergy language or other alarm ringers” is a wise lesson I should take to heart as I meet with her new school principal and camp director.

Two very disturbing stories come out of an article posted in the Daily News Online, Allergy policy draws fire in Amesbury. The article features two children in Amesbury, MA, who were rejected from a public park summer program because of their food allergies. Parents of 6 year-old Alex Devlin, allergic to peanuts and eggs, were told their son couldn’t attend the summer camp because counselors are not allowed to administer Epi-Pens. The Amesbury recreation director concedes that they could train all staff in how to use Epi-Pens, but claims it is too difficult to control food allergies in an outdoor camp environment, “especially since what kids bring to the programs for snacks and lunches is predominantly peanut butter.” The other family highlighted in this news article, the McCarthy family, had been told last year that they would only admit their nut-allergic son if the parents signed a waiver saying the town wasn’t responsible if something happened, and if they didn’t send his EpiPen. The mother was told by the youth recreation office that her son’s allergy would be too difficult for an outdoor camp to manage, and that “she should consider sending him to a private, indoor camp.”

And if you haven’t yet seen it, FAAN also posts some useful guidelines for managing food allergies at camp. Check it out!

I’m addicted to ice cream. Always have been, always will be.

There is a caveat. I only eat ice cream that tastes great. And let’s face it, most dairy-free ice creams aren’t so great.

There are three brands of dairy-free ice cream that I just love. In ranked order of preference: Temptation Vegan Ice Cream, Klein’s Kosher, and Tofutti.

My daughter likes Tofutti — especially their Marry Me Bars and Tofutti Cuties. But I don’t buy these often, since I saw that Tofutti also makes Peanut Butter Ice Cream, and Tofutti Cuties with peanut butter ice cream in the middle. The cross-contamination risk seems too high.

Klein’s Kosher is also great — but some of its flavors have nut disclaimer labels. (While I haven’t seen that they make peanut butter ice cream, I have seen butter pecan and pistachio flavors.) A little less risky for the severely peanut-allergic, but still not completely safe either.

In addition to superior taste — Temptation Vegan Ice Cream stands out because it is made on dedicated vegan equipment in a dairy-free, egg-free, peanut-free, tree-nut free facility. You can’t get any safer than that for a food allergic child.

Now for some terrible news.

At my local Whole Foods today (in Falls Church, VA), I noticed a “clearance/discontinued” tag on all flavors of Temptation Vegan Ice Cream. I marched to customer service, in total disbelief, and asked to talk with a manager. They told me that Chicago Soydairy, the maker of Temptation Vegan Ice Cream was going out of business.

WHAT?

Say it ain’t so! I can’t believe this is true. I thought the company was growing — not going out of business — since they just came out with a new product line in late February, Teese Vegan Cheese. (I would love to try it, but it is only being sold to restaurants.)

If anyone can confirm or deny this rumor, please let me know before I run out and buy another freezer to accommodate the stock of every Whole Foods in the metropolitan DC area.

There is a great article that discusses Passover from a food allergy perspective and gives useful reminders for shopping for Passover food. The article, What does Kosher for Passover mean for food allergies?, is posted on the Kids With Food Allergies website.

I want to comment on two items the author raises.

1. The author rightly points out that Jews from different parts of the world follow different food restrictions during Passover.

Ashkenazi Jews (the Jews of Eastern Europe, France, Germany and their descendents) follow a more stringent set of restrictions than Sephardic Jews (the Jews of Spain, Portugal, North Africa, the Middle East and their descendents). In addition to avoiding wheat (except as baked into Matzah), barley, spelt, oats and rye, Ashkenazi Jews also do not eat corn, soybeans, legumes, rice, millet or other grains during Passover. Some communities also prohibit the consumption of dry peas, caraway, fennel seed, mustard, garlic and peanuts – as well as derivatives of any of the forbidden items (such as soybean oil or flavors made from grain alcohol).

Like most American Jewish families, mine is Ashkenazi. But I think I’m going to ask for a waiver to switch teams. For those of us with food allergic children, it seems unfathomable and borderline cruel to add additional food restrictions to our children’s diets for the eight days of Passover. If I am forced to eliminate from my daughter’s diet rice, soy, and corn and legumes –in addition to the foods to which she’s allergic– there is very little that she can eat. Also, in order to meet my daughter’s calcium requirements, I feel it is important to give her rice milk or soy milk.

2. The author advises readers searching for kosher for Passover foods to go shopping at Kosher markets early and often because availability varies in the weeks leading up to Passover. Whether or not you are shopping for Passover foods, I second the author’s recommendation to visit Kosher markets. From my experience, Kosher markets are an incredibly useful place to shop for milk allergic children. First, you don’t have to ask whether they use the same deli slicer for cheese and meat. You know they don’t. Second, their variety of Tofutti products (milk and casein-free cheese and cream cheese) is better than anyone else’s. Third, they often have hard-to-find, crazy delicious pareve ice cream (like Klein’s Kosher Ice Cream). My favorite Kosher market in the Washington area, hands down, is Shalom’s on University Blvd. in Wheaton, Md.