Back to School with Food Allergies: Taking that Leap of Faith

Since my daughter with severe food allergies is beginning middle school this year, I've been quite nostalgic lately thinking back to her first day of kindergarten and what that was like for us. In a word: scary. Let me explain.

The year before kindergarten, my daughter experienced her first anaphylactic reaction to a peanut butter sandwich. Then she was diagnosed with a tree nut allergy. A few months later, she started experiencing asthma due to seasonal allergies. It felt like a triple threat, and a lot to absorb.

 At the time my daughter first entered school, I felt like I still had a lot of unanswered questions and unknowns that I was facing. I had been fortunate to find a nut-free preschool for her to attend, but elementary school was an entirely new world. It was a place where many of her allergens would be present each day, in one way or another.

Once you start heading down the slippery slope of "what ifs?" you can find yourself in for some serious stress. For example, I wondered if my daughter was going to be exposed to constant allergy triggers and possible reactions. I wondered: How much allergen in the environment would be too much? Then I started projecting into the future: As her school career went on, would she be able to participate in birthday parties, extracurricular activities and play dates? Would her school life be a happy one or one filled with allergic reactions and stress? Would today be the day I get "the call" telling me there was a reaction?

I look at old pictures of my daughter back in kindergarten and I think to myself: How did I let that little face out of my sight? She looks so small, so vulnerable, especially when I look at her now, so grown-up and poised.  I imagine that many of you are thinking similar things about your kids, as you send them off to school carrying backpacks that are nearly bigger than they are. It's not easy to hand over care of your child to others when they deal with serious food allergies, especially when they are very young.

This is one reason why I believe so strongly in teaching kids to be their own best advocates. As parents, we do our best to be informed about everything, but sometimes that is impossible. If you teach your child to question foods and refuse anything that isn't approved by you, that is a huge step in keeping them safe. Of course you must work with the school, too--that's absolutely crucial. However, teaching kids to stand up for themselves and self-manage can never begin too early in my opinion. I've found that this approach has definitely helped my daughter throughout elementary school.

And now comes the really hard part. Once we've taken care of our must-haves for school (like our medical forms, formal written health plans for our kids, communication with school staff and the like), then what?

Eventually, there comes a time to do the most uncomfortable thing of all -- taking that leap of faith that you have taught your kids well, communicated with your school and that it will be OK. It can feel like a very scary leap. In fact, I still feel like I take "the leap" each year and we've been dealing with this for 8 years. Don't beat yourself up if you feel uncertain or unsure. But if you know you've taken all the safety steps you can, it's good to feel happy and excited for your kids, too.

I wish all of you the very best for a wonderful school year whether your child is just beginning school, starting a new school or just starting a new grade. Let us know how it goes for you! We are all in this together.

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 Allergies: Teaching Your Child to Self-Advocate Pays Off

I wanted to share a story with you since I know that many of us worry about teaching our kids to handle their allergies on their own. When your little one is diagnosed with severe food allergies (usually this happens at a very young age)it can be difficult to imagine them ever managing it on their own.

From personal experience as well as what others share with me, I've found that teaching a child to manage the allergy should begin immediately. Obviously you don't want to scare a tiny child with too many details, but emphasizing "safe" and "unsafe" foods and teaching kids how and what to avoid is something you can do right away. Two really good resources for helping you to do this are the Beyond a Peanut flashcards and the young children's book "Ally the Allergic Elephant" by Nicole Smith (who I met recently, along with her awesome teen son, Morgan.)

My family used these resources as well as positive encouragement and reinforcement with my daughter from the time we knew of her allergy at age 4. Her own memory of her severe allergic reaction (that clued us into the fact that she had an allergy at all) certainly keeps her on track, but our family's consistency with regard to managing the allergy has also helped. Like many of you, I've often felt like a broken record, repeating myself over and over, but now that my daughter is 11 years old, she's taken over a lot of the ownership of her allergy management.

Case in point: This past weekend, my daughter attended a Taylor Swift concert with her cousins in Detroit. Since the concert was held at Ford Field (a football stadium) of course peanuts were being sold by vendors. Luckily, there weren't a lot of peanuts around her seating area, and it was nowhere near as "peanutty" as a baseball game, but she told me later that she was a little concerned.

Since we knew this would probably be an issue, she asked to eat before going to the concert and while there, only ordered a Coke. Let me tell you, she could have cared less about eating at the concert. It was her first "grownup" concert so it was all about Taylor Swift and the experience of seeing her.

What really impressed me was that she was careful to only order a "bottled" Coke from a vendor at a stationary location in the arena. Why? She noticed that the vendors selling food/drinks in the stands were serving peanuts as well as "open," already-poured drinks and she didn't want to risk the cross contact. This was something she spotted on her own and brought up without prompting. She was right to be concerned because the vendor-sold items did carry a risk that was better to avoid altogether. She also carried her own hand wipes and cleaned her hands--you can't have too many hand wipes when out and about with a food allergy.

Do I wish she didn't have to be so concerned? Of course. But this kind of proactive thinking (along with eating before the show) is what's going to keep her safe and healthy as she moves to even more independence. It wasn't a big deal to her--by now, it's just part of life and it doesn't faze her.

This is such a great point for a child to reach. It doesn't mean I don't worry anymore, but since I can see her making the right choices, I feel good about her doing things on her own.

For those of you who have very young kids facing food allergies, just keep playing the "cracked record" and one day, your kids will be telling you how they can stay safe.

And that's a huge point to reach, because let's face it: no one is going to be as concerned about food allergies as you are (or your kids are). They have to self-advocate and the sooner they learn, the better for everyone.