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Navigating Halloween With Food Allergies

October 29, 2013 •  3 comments.

 •  Blog, News

Written by Emily Matthews

 

Food allergies don’t have to put a damper on a child’s enjoyment of traditional holidays. Research from science think tanks and mastersdegreesonline come to the same conclusions: with a little planning, a child with severe food allergies can have just as much fun on Halloween as any child who is not suffering from this problem. By focusing on a great costume and other aspects of the holiday that don’t affect your child’s food allergies, your child will not worry about missing out at all.

One of the best ways to celebrate Halloween when your child has food allergies is to host a party at your house and serve only treats that are safe for them to eat. You can even have trick or treating in your home by having candy that is safe for your child to eat passed out in different rooms. The children who attend as guests will very likely not even notice anything different about the treats being served. If you take the initiative to provide activities and candytreats for your child to do during Halloween that are fun and exciting, your child may even feel that they got to do something extra special during the holiday and not worry about not being able to do what any other children are doing that day.

For school parties, helping plan the party, offering to bring safe treats, and explaining to your child’s teacher can help keep your child safe from getting any candy that could trigger their allergies. Using fun games as an alternative to candy is a great option to ensure that everyone has a good time on Halloween. If you are not able to attend your child’s school Halloween party, make sure that you inform the teachers and personnel ahead of time, just in case something happens and your child accidentally ingests candy that could provoke a reaction. Teachers should be informed of any signs of a reaction and any ingredients that could trigger your child’s food allergies.

It’s an unfair reality that most of the food passed out on Halloween won’t be safe for your child to eat. However, making sure that you know whattheycaneat will make things much easier. Do your research, but know that many sugar candies are free of the top eight allergens. At the end of the night, have your kids do a swap with their friends – they get all the Nerds, Smarties, and Dots, and don’t have to deal with the M&Ms and Snickers bars.

If some of the candy may be safe to eat, you can sort through it after your child brings it home and before they are allowed to eat anything, to make sure that all of it is safe to eat. Some children’s dentists offer children money in exchange for candy to promote healthy teeth, and cashing in on this type of promotion can help your child feel better about losing part of their stash.

It may take a little bit of advance planning, but your children’s Halloween can be just as great as yours were as a kid!


Emily Matthews is currently applying to masters degree programs across the U.S., and loves to read about new research into health care, gender issues, and literature. She lives and writes in Seattle, Washington.

Emily’s Story: A Teenager’s Death & The Power of Love

October 6, 2013 •  29 comments.

 •  Blog, News

Written by Paul and Catrina Vonder Meulen and introduced by Robyn O’Brien

Seven years ago, we were contacted by a father who had quite literally just lost his 13 year old daughter, Emily, to an allergic reaction.

AllergyKids site could not have been up for more than a handful of days when his email came in.  ”I wish I had known about you earlier….” he wrote, and then shared one of the most heart-aching stories we have ever received.

Emily’s story took hold of our hearts and inspired our mission.

In the weeks, months and years that have followed since he first reached out, she has been part of our work and courage here at AllergyKids.

But, her story is not the only one.  In the years since, there have been others, and I have looked into the eyes of too many parents who have lost their children, as lives were cut short.

Their memories and the unconditional love of their families power the work that we do at AllergyKids beyond anything imaginable.

It has been seven years since Emily died.  She would be turning 21 this year.  And her story is a testimony of love and courage that has inspired countless others.  Her favorite saying was “Live, Laugh, Love.”

And so we wanted to take this opportunity to once again share her story, as it originally first appeared on the AllergyKids site seven years ago, in the hopes that families everywhere can learn how to protect the health of children with asthma and allergies from cross-reactivity and cross-contamination.

As shared by Emily’s parents:

Emily’s Story and Our Message

When Emily was about two years old, Paul gave her a peanut butter cracker, almost immediately she started to fuss and rub at her eyes and start to develop hives. He gave her Benadryl and the allergic reaction calmed down. It was only after Emily’s death and subsequent research that Paul realized that this was when Emily’s immune system started building antibodies to fight off nuts.

After this initial exposure to nuts, Emily’s body developed its own protective warning system. If she came in contact with a food that had been exposed to nuts, she would have a tingling sensation on the back of her tongue, she would immediately spit the food out and then to protect itself, her body would vomit trying to expel whatever the offending allergen was. It was that reaction that made us comfortable with this allergy. She knew what she could and couldn’t eat. If kids brought snacks into school and they couldn’t tell her if it had nuts in it or not, she wouldn’t eat it. If they said it was free of nuts, she would still test it by putting it to her lips and touching it with her tongue. If she didn’t have a reaction, she knew it was safe.

I think you really want to know more of what happened that day, but I needed to let you know why I was so unprepared for what happened on April 13th. Elena (10), Emily and I had gone shopping that day for a graduation dress at a mall here in Cincinnati. After buying her dress (which she wore out of the store) we stopped to have lunch at about 2:50 at the mall’s food court. We decided to have a sandwich at a place that we had eaten before (we considered it a “safe food” restaurant) because Emily, in fact, had eaten this very same sandwich many times before with no problems. Their website even shows that it is peanut-free except for two of their cookies. After having lunch, we walked through a new t-shirt shop where Emily fell, tripping over her shoes, and landing on her bottom. She laughed and got right back up. We continued shopping, going to a store where we were going to get Emily’s ears pierced. While we were in this shop, Emily mentioned that she was afraid she might have messed her underwear when she fell and wanted to check it out. She came back about 5 minutes later, did two puffs of her inhaler, telling me that she felt hot and did her face look red. I told her no, but maybe we should leave. She said that her new dress felt tight and that she wanted to change her clothes. I said fine. She took her clothes and went to the bathroom. Elena and I stayed at the shop looking at “girly” stuff.

A few minutes later, I got a phone call from a girl in the bathroom asking if I have a daughter Emily and that she was having trouble breathing. Elena and I rushed to the bathroom where we found Emily gasping for air. She tried to do her inhaler again, but I could tell from looking at her that this was not good. The whites of her eyes were completely red and her normally pink cheeks were white. I immediately called 911. Emily had enough air to ask two questions. Emily became disoriented and wandered into the hallway. I had her lay down and she passed out. A woman passing by and I started performing CPR while Elena was on the phone with 911. The woman that was helping me said that Emily was O.K., and another woman said she felt air coming out of her nose. To me, Emily was not O.K., she was blue. Then I heard the strangest sound come out her mouth. People later tell me it was her death-breath. 911 had not shown up yet. Emily was taken to the hospital where they continued CPR. I arrived maybe 10 minutes later where the doctors told me they could not get her heart to start. They had finally got the breathing tube in the right spot, but they had given her all the medicine they are allowed to jumpstart her heart plus more, with no success. They were telling me my daughter was dead. It was 4:20. I believe Emily passed away in the bathroom hallway at the mall, which would have been around 3:45.

To answer your questions:

Did she have an Epi Pen with her? If so… Was it administered immediately?

NO, I did not have an Epi-pen with me. Unfortunately, if I did have an Epi-pen with me, I don’t know if I would have known to use it. I thought Emily was having an asthma attack because of her fall. I didn’t know that what was happening to her was associated with food. She didn’t have the tingling on her tongue, she didn’t vomit, it was a safe food (so we thought).

What did she have to eat at the Deli?

Emily had the Sweet Onion Chicken-Teriyaki Wrap. We knew it contained soy sauce. This particular deli did not make peanut butter and jelly sandwiches. We still don’t know where the trace amount of peanut came from. Unfortunately, the coroner and the investigator can’t prove anything at this moment, but because her reaction was so rapid and violent, the coroner has no other option but to point to the last meal Emily ate. Somehow a trace amount of peanut cross contaminated the sandwich she had eaten. We are still waiting for lab results – until then the findings are inconclusive.

How quick was her reaction?

We ordered around 2:50 and were done eating about 3:10. My best guess is that around 3:20 is when she started feeling hot and went to change her clothes. I called 911 at 3:26 and I believe she was gone around 3:40. The doctor’s pronounced her dead at 4:20.

Did she have any close calls before her death from reactions to something she had eaten?

NO, she did not have any close calls before this incident. Paul and I were in a comfort zone counting on Emily’s internal alarm system and the fact that she knew what she could and couldn’t eat, while we were blind to the fact that she was still very much in danger. Please understand, Emily was terrified of the Epi-pen and was diligent about asking questions about food preparation and ingredients. She did not want to be stuck with the Epi-pen. That’s what makes this all the harder to understand, Emily was her own advocate.

Your child is at a wonderful age, you can still control what they eat, you are watchful to make sure they don’t put the wrong thing in their mouth, you are their advocate. During this age, you can learn what the symptoms of anaphylactic shock are, you can develop a plan in case of an emergency, and go over and over what the plan is with friends and family so, God forbid, that emergency comes, you don’t think, you react.

As your child gets older, and they become more independent and responsible, don’t relax! According to FAAN, children between the ages of 10 and 19 are at a much higher risk of fatality. It defies logic, because you think now your child is at an age where they know and understand the dangers of their allergies and they will not take a chance. But what you don’t know or think you know is what can take their life so quickly. It is almost as if every time you eat prepared food, your child has a gun pointed at their heart. We don’t want to scare parents, but we want you to be scared, so that you stay vigilant in protecting your child.

I know this may sound irresponsible but please read it for what it is, learning lessons. As a learning lesson, my family would eat shelled peanuts on the couch. When they were done, Emily and I would go into the living room and vacuum the couch and the carpets. I wanted her to understand that she has to protect herself and that she can’t count on others to be as diligent as she had to be. Another time, we were taking a flight to San Diego. At the time, they still served peanuts on the plane. I had Emily wipe down the fold-down tray and arm rests in case the person who sat there before her ate peanuts and the residue remained on the surface.

The most bizarre part of this past 14 years is that I don’t think I understood that Emily could die. I thought she would get hives, swelling, asthma attacks, or really sick, but never in all of my thoughts did I ever think of death. Why didn’t that ever cross my mind? Did I not want to think that was a possibility? I now look at a lifetime of guilt, wondering how I could have done more. Please don’t ever feel you are being too protective when it comes to the health of your child and if someone tells you to relax, tell them Emily’s Story.

Learn more about Emily as the Vonder Meulens share “What We Wish We Knew“, including the potential risk that soy may pose for those with peanut allergy and how anaphylaxis can look like asthma by clicking on What We Wish We Knew as seen on www.foodallergyangel.com

Seeing Red: One Mother (A Medical Writer) Investigates Food Dyes

October 4, 2013 •  105 comments.

 •  Blog, News

Written by Amy Kilgore, a medical writer and healthcare public relations specialist who has a daughter with extreme sensitivity to dyes, for AllergyKids

My daughter was two, and I was seeing red. A lot of red.

I wasn’t angry. I was horrified. I had just discovered that the rash my toddler would get after certain candies was not in fact caused by chocolate, that the hyperactivity was not from too much sugar, that her uncontrollable bouts of crying and angry behavior were not because I was doing a lousy job of being a mom.

My little girl Monica was reacting to food dyes. Most specifically, Red 40 and Yellow 5. I can’t recall which friend suggested it and what exact moment I realized it, but by the time she was two I was certain. I had (painfully) tested my theory by giving her things with red and yellow food dyes and logging the reactions. Yellow: rash, hyperactivity, trouble sleeping. Red: hyperactivity, followed by (really) mean behavior, followed by shaking and crying; trouble sleeping. It was exhausting and heartbreaking to witness her little body’s reaction when invaded by these dangerous and unnatural additives.

Even more frightening was the realization of how many foods contain dyes.

I’ll never forget one specific call from my mom. She was watching Monica, her firstborn grandbaby, for the day while I worked from home and caught up with life. I was putting clothes in the dryer when the phone rang. I could hear her concern in “Hi.” Followed by, “What has happened to our sweet girl?”

Mom explained how Monica had been behaving – not listening, running around wildly, screaming, crying. I told her that the day before had been a bit trying as well. But we were perplexed, because we were so very careful with keeping her diet dye-free and had been the only ones feeding her for days.

Then my mom, a registered nurse, gasped. “Omigosh. Her antibiotic is pink. You don’t think…?” I called the pharmacy. Yep, the liquid antibiotic we were giving Monica to treat an ear infection had Red 40. I had dosed her twice a day for four days with Red 40! Several calls to the pediatrician and pharmacy resulted in a prescription for an antibiotic without any artificial coloring, a note in Monica’s chart and pharmacy file, and a little girl who within a day was calm, cool and collected (albeit exhausted).

I needed to know more about food dyes, and Mom and I dove into researching how and why they could “flip the switch” in Monica and, I assumed, most children. The more I learned, the sadder I felt for our children. Not only are food dyes causing hyperactivity, inability to concentrate, aggressiveness, sleep problems, increased symptoms of autism and ADHD, among many others, but they are known carcinogens. They cause cancer.

Here’s some food for thought from the Center for Science in the Public Interest.

“Back in 1985, the acting commissioner of the FDA said that Red 3, one of the lesser-used dyes, “has clearly been shown to induce cancer” and was “of greatest public health concern.” However, Secretary of Agriculture John R. Block pressed the Department of Health and Human Services not to ban the dye, and he apparently prevailed—notwithstanding the Delaney Amendment that forbids the use of in foods of cancer-causing color additives. Each year about 200,000 pounds of Red 3 are poured into such foods as Betty Crocker’s Fruit Roll-Ups and ConAgra’s Kid Cuisine frozen meals. Since 1985 more than five million pounds of the dye have been used.

“Tests on lab animals of Blue 1, Blue 2, Green 3, Red 40, Yellow 5, and Yellow 6 showed signs of causing cancer or suffered from serious flaws, said the consumer group. Yellow 5 also caused mutations, an indication of possible carcinogenicity, in six of 11 tests.

“In addition, according to the report, FDA tests show that the three most-widely used dyes, Red 40, Yellow 5, and Yellow 6, are tainted with low levels of cancer-causing compounds, including benzidine and 4-aminobiphenyl in Yellow 5. However, the levels actually could be far higher, because in the 1990s the FDA and Health Canada found a hundred times as much benzidine in a bound form that is released in the colon, but not detected in the routine tests of purity conducted by the FDA.”
Source: www.cspinet.org

Monica’s diet is completely dye-free, as are those of her little brother and my sister’s three boys. Not all five kids react the same to dyes – two react more intensely – but we still see significant behavioral reactions if they accidentally ingest food dyes, especially Red 40 and Yellow 5.

Of course, maintaining dye-free diets becomes a great challenge once they hit school age and are not always under our watchful eyes. At the suggestion of my pediatrician, we list food dyes as an “allergy” on their medical forms. Listing as a “sensitivity” just didn’t garner the same attention and adherence to avoidance. Yet there are slip-ups, such as when a well-meaning teacher gives orange punch, saying it’s okay because it’s not red or yellow (sigh). Or when the treat handed out is a “safe” white cupcake with white frosting, yet the inside is “confetti” with pink and red candies.

A recent incident sent the same shock through me that I had felt when I started investigating Red 40 eight years ago. I was having lunch with Monica, now age nine, at Eat’n Park. As long as we ate plain burgers and fruit for a side, Eat’n Park was one of the few restaurants I had tested and actually deemed “safe.” As a general rule, we reserve dessert as an occasional treat. That day I didn’t see any reason why Monica couldn’t have a slice of pie while I enjoyed another cup of coffee.

We spent a long time looking over the pie menu. Lemon meringue? Nope, looked too yellow. The same with banana cream. Strawberry? Not a chance – way too red. Together we narrowed it down to apple or chocolate cream. She chose chocolate cream and was thoroughly enjoying it when I noticed the crust had a pink tint on the top where the chocolate cream was sitting, as did the white whipped cream topping where it touched the brown chocolate. I couldn’t imagine it had red dye (chocolate pie?!), but I strongly urged her not to eat any more. Much to her dismay, she stopped eating the pie about halfway through the slice.

We had been having such a fantastic day – she’d been in such a good mood. Fast forward about one hour post-pie. She’s sitting in my car in her grandparents’ driveway, screaming at me and refusing to get out of the car because she wants to go home to change clothes. Even forceful prodding from her dad didn’t work. Exasperated, chalking it up to pre-teen hormones, I take her to change her clothes. As I’m telling her how inappropriate her behavior is and asking what in the world is wrong, she’s so busy yelling and talking angry to me she doesn’t hear a word I say. She even got so mad at one point that she hit my seat.

Following these completely out-of-character temper tantrums and verbal lashings, she starts pacing and bouncing and can’t even stand in front of the closet long enough to focus on what clothes to change into. She can’t make even the simplest decisions and can’t stand still long enough even if she wanted to. Still not making the red dye connection (forgetting about the pie), I head to the couch to sit and ride it out.

Monica ends up on the couch next to me, shaking and sobbing uncontrollably and asking me to make whatever is happening to her stop. Squirming and itching and rocking and crying, “Just make it stop, mom!” Finally exhausted, she lays her head on my lap in exhaustion. The whole episode lasts about an hour.

I call my mom and share the whole incident with her. Mom asks what Monica ate, starting with the previous day. Needless to say, I had déjà vu when I got to the Eat’n Park meal (“Omigosh. The chocolate cream pie. You don’t think…?”). Sure enough, one call to Eat’n Park and a pie ingredient check proved it – the chocolate cream pie had Red 40.

It’s certainly a challenge to avoid these dyes and many of the food preservatives I now don’t let anywhere near our mouths. I have a significant number of food allergies and have become very well educated on eating “clean” (whole, natural, organic), so I’m sure it’s easier for me to stay focused on living this way. But we absolutely cannot continue to ingest these dyes, especially children. If we could eliminate these dyes from our foods and our bodies, I am completely convinced that cancer prevalence would lower as well as the occurrence of ADHD and autism, among other cognitive, behavioral and emotional disturbances. The world would seriously be a better, much healthier place.

Amy Kilgore is a medical writer and public relations specialist in Akron, Ohio, and mom to Monica and Chase. Living on a restricted diet for the past 15 years due to multiple food allergies, Amy is strongly dedicated to whole, natural and healthy eating as well as providing education and sharing experiences about the ill effects of processed food, additives and dyes.