Our Food Allergy Journey So Far/Preventing Peanut Allergy Reactions

This is going to be a long post, so bear with me. A lot has been happening. 2012 began with difficulties to those of us raising children with life-threatening food allergies, especially peanut allergies. The biggest tragedy related to food allergies was when a 7-year-old girl lost her life due to a peanut allergy incident at school--every parent's worst nightmare.

Another thing that has worried parents in the last couple of weeks is introduction of Peanut Butter Cheerios to the marketplace. Yes, there have been many new peanut butter/tree nut products introduced in recent years. But Cheerios is marketed and used as a baby/toddler food, so obviously parents of allergic kids are concerned about mix ups, cross-contact and increased exposure to allergens among a young and vulnerable group of children. Basically, even though I'm sure it was not intended, this new product makes keeping our young kids safe even more difficult.

I started out the year feeling very hopeful and while the things I mentioned above are hard to accept, I want to tell you to feel hopeful, too. You have it in your power to educate your children against accidental ingestion. Educating them does work! For me, the proof is in my own child. She has always advocated for her safety--even questioning me about products I bring home from the grocery store. I love this about her and encourage it. When it comes to food allergies, you must help your kids to self-manage and self-advocate. The earlier you start, the better.

Let me share a recent story. One of the gifts my daughter received over winter break was a cupcake cookbook. Of course, some of the recipes had peanut butter, but that was not a big deal. "We'll just use SunButter for those" my daughter shrugged, and moved on when she spotted those recipes.

Only another parent who has spent many, many years baking dozens of cupcakes and other baked goods for every kid in the class can appreciate what I'm about to say next. My daughter is now baking for herself, from scratch. I nearly fainted when she baked the lemon cupcakes (pictured above) and presented them to the family for New Year's. (They were delicious! No joke.) I was overjoyed. Not only was I going to get a little break from the baking, but my daughter is learning to take care of herself. Learning to make homemade baked treats is a necessary skill for someone with life-threatening nut allergies. It warmed my heart to see my daughter taking on a skill she will need and enjoying the feeling of accomplishment it gave her. Plus, I thought to myself "She's seen me in the kitchen all these years baking for her, her sister and her school parties. She wants to do it for herself now. She understands."

Food allergies don't seem like a big deal to most people who aren't familiar with them. Each parent has different parenting styles and philosophies, but food allergies don't leave wiggle room in one important area, and that's life or death. You can't argue with a life-threatening allergic reaction once it begins. So prevention is always the best way, with preparedness for emergencies coming in at a close second.

I've been writing this blog for several years--this January marks the fourth year of my blog--and we've been living with food allergies for 8 years. The journey has been difficult at times and recent incidents like a tragic death remind me of how important it is to be proactive in our own lives. There is no replacement for this! Yes, epinephrine autoinjectors will help save lives and informed teachers and staff members are a must-have. But I've found that the single most important thing you can do is to help your kids learn how to prevent allergic reactions by following a few simple rules.

Now don't get me wrong--age plays a factor. The younger the child, the more they rely on others to help them. However, you can start at an early age with the process of self-management. Teach kids to say no to foods that they aren't sure about. Bottom line, period. Never seen it before? Don't eat it. Your friend tells you it's safe (this is one they will hear time and again -- "But it's safe.") Nope, unless you know this for a fact, don't eat it.

In the younger grades, my daughter used to bring foods home in her backpack for me to check. This was our rule and it worked very well for us. You may say that kids can't control themselves, but as they get older, this is something to practice with them. Even young kids can learn that certain food rules can't be broken and that foods offered at school are NEVER safe unless they've been checked by you or your trusted caregiver.

Another rule we've followed to the T: Don't ask the teacher to be the main gatekeeper of foods at school (even though some teachers are truly remarkable at food allergy management). This is something you should control. It seems that the "surprise" treats and such have the most potential for problems and allergic reactions. Be proactive and provide your child with safe alternatives that stay in the classroom and advocate for minimizing food and treats in the classroom as much as possible.

As kids get a bit older, such as kindergarten, the real training begins. This is where they will learn to be their own advocates, so teach them to say no if a classmate offers them any food. By the same token, no home baked treats brought in by parents unless you bake them. I can't tell you how many times I've seen nice, sweet moms of non-allergic kids bring in home baked treats and tell the class that they are "nut-free" or "dairy-free" or whatever. But if they aren't managing food allergies in their own homes (and sometimes, even if they are), the cross-contact risk is there.

You don't want kids to be frightened of eating, but you do want them to be cautious. Food is not always their friend. Facing that sometimes unpleasant fact head on will help to minimize accidental ingestion.

Another thing that helps is to show kids what isn't safe and what unsafe foods look like. In an effort to keep homes nut-free (something I do advocate if you have life-threatening nut allergies at home), some kids have never seen a peanut or tree nut! Show them what unsafe foods look like so they can avoid them. I love Beyond a Peanut for this reason. This is a great flashcard system that teaches kids and adults all about nut allergies in an easy-to-use format. Educating kids is key and this is a great way to do it.

Accidents can happen and mistakes can occur, so in tandem with reaction prevention, teaching emergency procedures is key. A couple of years ago, my daughter had a reaction at school, after lunch. She felt sick and she said she had the "feeling of doom" that is common in people experiencing allergic reactions. It turned out that her face had hives and her eyebrow was swelling.

Because she knew that the greatest potential for allergic reactions was around lunch time, my daughter high-tailed it to the nurse's office. The nurse took one look at her and said "Are you having an allergic reaction?" My daughter said yes, she thought she was. They treated her with Benadryl (per our emergency plan) and called me into the office. Please note: We have more than one epinephrine autoinjector stocked at school for allergic reactions and had other symptoms appeared, we would have used it. Please ask your doctors about when/how to use epinephrine for emergencies.

Luckily the reaction turned out to be mild and it did not progress. We got off easy that day, but part of the reason why had to do with preparedness.

My then 9-year-old daughter knew what to do in the emergency. She asked to leave the lunchroom and went straight to the nurse. (Looking back, an adult should have accompanied her, so go over this with your own school). The nurse knew my daughter because of the many conversations and before-school meetings I had with her when my daughter entered the school. So when she spotted her in the office with facial hives, she knew she might be looking at a severe allergic reaction in progress. While the nurse was prepared, had my daughter hesitated or been too upset to ask for the nurse, things could have gotten worse, quickly. It's worth it to role play these situations because unfortunately accidents do happen.

Looking back over the years since my daughter's food allergy diagnosis at age 4, we've come a long way. I trust my daughter so much more now that she has learned to self-advocate and self-manage. She will still need help, guidance and support, but she's getting there. She's taken in the lessons we've tried to teach her.

I want all of you dealing with allergies in your young kids to know that you can do it, too. A commitment to educating kids about their allergies and being proactive at school is something everyone can do.

I want 2012 to be safe, healthy and happy for you all. Belatedly, Happy New Year, everyone!

Nutphree's Cupcakes www.nutphrees.com
 

Food Allergy Deaths Are Tragic and often Preventable

I had planned to begin the new year with an uplifting New Year's post about how far my family and daughter have come in dealing with food allergies. I wanted to share some positive stories and tips that we've learned over the years.

And then I read the latest news story about a food allergy death in Virginia. A 7-year-old girl became ill and died from an apparent peanut allergy reaction on her first day back at school. My heart goes out to the family and I am very sorry for their loss.

This tragic story called to mind other recent food allergy deaths, one of which involved a 6-year-old girl at a school in Quebec. I was reminded of a 7th grader in Chicago who died in December 2010 from a peanut allergy reaction. Of course there have been others but these two stick out in my mind because they happened at school and in both cases epinephrine autoinjectors were not available to the students. With food allergy deaths, the lack of epinephrine autoinjectors or their usage is a common theme. It's worth checking on your prescriptions right now and making sure that they are accessible to your child at school and anywhere else for that matter, at all times.

Accidents can happen and no one can prepare for every circumstance, but so much can be done to minimize the risk of these deadly reactions ever occuring in the first place. As much as we are shocked and horrified by these deaths, I hope we will all take the time to review our own food allergy policies and procedures at school (and everywhere else) and make sure that everyone involved is ready, willing and able to carry out emergency plans if needed.

Another hope is that we will be unafraid to teach our kids how to handle food allergy situations. Even very young kids can be taught what to do. Just like fire drills, you can have food allergy drills where you talk about how to avoid food and what to do if your child feels sick at school. This process doesn't have to be scary or terrifying, but it can be empowering. Our ultimate goal is that kids will self-advocate and self-administer medications as they get old enough.

That's just one piece of the puzzle. I urge everyone, especially those of us with young kids, to check in with the school and make sure everything is up to date with regards to medications and emergency procedures. Issue reminders and provide additional information or medications if necessary. I like to check in with the nurse after winter break just to make sure all of my medications are up to date, for example.

For those of us with older kids, ask them to practice using an epinephrine autoinjector and go over basic food allergy rules about safe foods, remembering to carry their medications, whatever you feel they need a review in.

Another thing you can do is support the epinephrine bill for schools. This link will take you to a page where you can find a sample letter of support for this bill and it will help you to find names and addresses of your local senators. It doesn't take long to customize one of these letters and if this bill becomes law, it can save lives of precious children.

It's natural to wonder what went wrong in tragic food allergy deaths so that you can better prepare yourself and your kids for mistakes or allergic reactions. But there is a flipside to this that is also tragic (to me, anyway) -- and that's the notion of living in fear.

Some of us might be tempted to think that school or other activities are simply not safe and that we must either be constantly terrified and/or take our child out of educational settings or activities that are enriching to them. We might become unduly negative towards the idea of our child becoming independent or trying new activities.

While food allergy deaths are horrible, it's good to remember that education can save lives and readily available, quickly administered epinephrine can prevent deaths. Learning to avoid allergic reactions is also key -- such as avoiding unsafe or high-risk foods and learning to manage different environments. I hope we can focus on being prepared and not just being scared.

An article in USA Today reflected some of these views with quotes from prominent allergy doctors. I was happy to see this article because it reiterates how important and effective it is to be prepared and to expect mistakes. If you expect them, you can be ready to deal with them.

I've had many questions about dealing with food allergies at school, so here are some links that you might find helpful.

FAAN Resources for School Professionals

Back to school tips from my blog with many helpful links to articles and resources

FAAN Blog--Our Family's School Success Story

Thanks to everyone who has shown support for the families who lose their children to food allergies. Our thoughts are with them today.

Does Peanut Butter Still Have to = Back-to-School??

I'm curious--with school back in session have any of your local papers run any food feature stories lately paying homage to peanut butter as "that good, old-fashioned" school lunchbox food??

I only ask because earlier this week, on the 2nd day of school for Chicago public school kids, the Chicago Tribune Good Eating section ran a huge feature about peanut butter. The title page read:"The time is ripe for a peanut butter resurgence. Spread the love" with large pictures of peanut butter dripping off of a spoon, peanuts scattered about randomly and peanut butter cookies stacked up on a plate.

The picture alone was a turn-off, as was the first line of the story: "During the back-to-school rush, we think of peanut butter as a front runner in the lunchbox sandwich brigade."

Oh, we do???? And why does peanut butter need a "resurgence?" Unfortunately, it hasn't exactly gone out of style.

Where have these editors been? Even if your school does not support a peanut butter ban (more on this in a minute) most parents these days are familiar with food allergies, particularly peanut allergies. And many families, like many of you out there reading this right now, deal with food allergies in your own family.

My first thought (after ugh!) was "How archaic are these editors?" And my second thought was: "How insensitive are these editors?"

Like many of you, I've just spent that last several weeks filling out allergy forms, getting prescriptions ready, calling doctors, instructing others on safe foods and EpiPen usage, getting an allergy ID bracelet, and so on, etc., etc.

For this story to appear on the 2nd day of school was, I felt, a slap on the face to everyone who has approached their school on the dangers of peanut butter for food-allergic kids. I just have a gut feeling that someone, somewhere at the Tribune food department has to be ticked that their kid can't bring peanut butter to school, or has to curtail their consumption of peanut products at school. Otherwise, I can't account for their need to promote a peanut butter "resurgence."

Even given the fact that I'm admittedly sensitive to peanut butter being promoted as a "go to" lunch food for school children, I wouldn't have minded a story simply about peanut butter. It's their right to write about whatever they want. Some of my favorite food magazines have written peanut butter features--though those stories are generally geared towards adults cooking for themselves.

But here's where the Tribune story added insult to injury. To accompany their feature, the paper also ran an AP story called "Backlash to school peanut ban has unlikely allies." This story, which quoted some hideous "message board" responses to one school's attempts to institute a peanut ban, also quoted Anne Munoz-Furlong (head of FAAN) as being one of these "unlikely allies." FAAN does not support a peanut ban in elementary schools, due to the fact that they don't want to promote a false sense of security, thereby leaving allergic kids even more vulnerable.

You may or may not agree with that logic, but I think most of us agree that FAAN would never consider itself an ally of the hatred that is spewn by many of the people who oppose a peanut ban. Yet, the story implied FAAN is on the side of the sort of whackadoodle who suggested on a school message board that the solution to food allergies in schools is to kill all the kids who have peanut allergies: problem solved. And every single food allergy parent quoted in the article said something like "I don't want my kids in a bubble." Hmmm...have any of you heard that one before? Like any us want our kids in a bubble--the point is we want them to live and be well. Big difference.

One woman even said she trusted her 7-year-old to self-administer his EpiPen in an emergency, stating that he was "smart." Well, so is my kid but according to my doctor self-medication is not recommended until at least middle school.

I'm not making this stuff up: read the story yourself. Even worse, the print version of this story was accompanied by a photo of a woman wielding an EpiPen in front of her young son with a big smile on her face. The message I took away: "Look, peanut allergies aren't that serious, in fact, they're really kind of fun! See my big smile?" Clueless, clueless, clueless.

The fact that some people don't want to be inconvenienced by a peanut butter ban does not negate the life-threatening nature of peanut allergies. The fact that the Tribune ran an AP story implying that food-allergic families' concerns about peanut butter are basically without merit was, I felt, an attempt to justify their peanut butter cover feature.

The massive increase in food allergies among school children is old news at this point. Why did the the Tribune choose to run these stories, at this particular time? As we know all too well, NO ONE needs to be told to pack peanut butter in their lunch. They already do. Why promote it??? It's not like it's a new and exotic food.

As the people who read this blog regularly know, I like to stay positive about this topic. And I truly believe that life with nut allergies can be managed so that our kids can live happy, normal lives. Usually, this type of stuff doesn't get me down all that much. I know what I have to do.

So: news stories like these simply tell me that as parents of food allergic kids, we have a lot more work to do. Maybe we're not getting the message across clearly enough that peanut allergies are serious, can kill and need to be mitigated. Or we are, and people are choosing not to believe it.

By the way, I'm not suggesting that peanut bans are always the answer. But I don't think they should ever be off limits. Some schools may need them more than others--it's a very complicated topic. My daughter's current school does not have a peanut ban, and I'm confident she'll be fine. But I'm just one parent. All of us with food-allergic kids deserve to have our voices heard.

I wrote a letter to that editor outlining everything I just stated here. That's a start, but I give all of us the challenge: do everything you can to educate your communities about this. Education is the best enemy of hatred and ignorance. And it will keep our precious kids safer in the long run.