Tuesday, January 17, 2012

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


Keeley McGuire said...

Great post! Thank you for sharing your thoughts and personal story.

It's ALWAYS going to be scary for PA parents. Especially when your child is at school, church, etc and you're not RIGHT THERE to monitor them. Education is key. You're absolutely right. For your child, their peers, staff, etc.

Thank you also for the link to Beyong A Peanut!

Anonymous said...

Jenny, thank you so much for all you do and for this blog which I am a faithful reader of. You have helped me so much and what I love is that you are always so hopeful and positive. Thank you for this wonderful post and all the good reminders. Laura

Anonymous said...

Thank you so much for your posts. Can I ask what happened at lunch that your daughter had a reaction when she was 9? Was it something that she ate, on the table or airborn? This is my biggest fear as my son will be eating lunch at school for the first time next year.

Jenny said...

Hi--We're not sure what happened. We know her own food was safe so it could have been something on the lunch table or from someone else's lunch. That's why I like it when schools at least offer the option of a nut-free table at school. The allergist thought it was probably from a trace amount of an allergen that she accidentally ingested. Since then, we have our daughter use hand wipes and watch where she sits and she has been OK.

Cindy in GA said...

Cheering for your dd here! The cupcakes looks great!!

I've been enjoying your blog for a few weeks now; thank you for being a great resource and help to other parents of food-allergic kids!

Jenny said...

One thing I should add--if you know your kid can't resist eating a treat before you check it, of course you shouldn't have them bring it home to you. You know your kids better than I do. My main point is that teaching kids to beware of unknown treats can start at an early age.

LeeAnn said...

A long post gets a long comment, right? ;-)

First - that is awesome that she made her own cupcakes! When we go to birthday parties I always make cupcakes for my daughter, so I am sure she will do the same when she is older.

My daughter had her first reaction to a cashew just before turning 3, and after that happened, she pretty much asked us if every single food had nuts in it. She now knows that we will not give her something with nuts in it, so she doesn't ask us any longer, but I want to keep her in the habit of asking everyone else.

How do you make the decision on whether to give your daughter Benadryl, or use the Epipen? Our allergist basically just said "if she looks like she is having a reaction, err on the side of caution and give her the epi." I do know that some people use Benadryl as a first line of defense, but I'm wondering how far you let it go before you would use the epi?

Great post!

Jenny said...

Thanks everyone for the comments. Regarding use of the EpiPen, I would just repeat what I said in my post and suggest that you have the EpiPen discussion with your doctors since they are the medical experts. A food allergy emergency action plan available at www.foodallergy.org (FAAN) is a great tool for this discussion with your doctor as well as being a good document to share with your school and child's caregivers. Thanks!

danita said...

Wow! I have two peanut/tree nut allergic kids. My daughter hasn't had any problems at school in 4 years, but my son has had two incidents in kindergarten this year! First he touched some pb in the cafe and got it in his eye! We are so lucky he only needed benadryl! He was asked to help clean up. Second the teacher allowed a child to eat a pb cup in the nut free classroom during snack. I went a little crazy! Am angry that both incidents staff allowed this to happen!

Diana said...

I want to commend you for being such a wonderful, sensible mother who has taught her child awareness and responsibilities for her allergies but not allowing them to define her as a person or limit her participation in life. Do you give seminars on this subject? You must be so proud of your daughter and of your parenting.

Jenny said...

Diana, thank you for the nice words. I have not yet done a seminar, but I have something similar launching soon, so check back!

Thanks to all who commented.

Anonymous said...

There is a clinical trial at Children's medical center for the very promising Chinese herbal formula aimed at preventing serious reactions from allergies. They are looking for volunteers. It wouldn't be easy but some may find it worthwhile. We would do it but our DD is not old enough.