Wednesday, January 15, 2014

Parenting a Child with Life-Threatening Allergies: My Very Best Piece of Advice

As the new year begins, I’ve been thinking about the best advice that I can give to parents who are wondering what they can do for their child to help keep them safe and reaction-free. After a lot of thought, this is it: Teach your kids to self-manage their allergies and be their own best advocates.

Please let me clarify: others need to know, too. Relatives, friends and schools MUST be educated on food allergy realities and risks. Young kids who can't advocate and/or understand must be protected.

However, as kids grow up and go out in the world, it's up to us to prepare them to live with their allergies. In the end, it all comes down to the individual: what they ingest, the choices they make and the understanding they have about allergies.

I've got a kid with severe, anaphylactic allergies attending high school next fall and I've been where many of you are now. Elementary school had its fair share of challenges and middle school, with its increasing independence gave us a few more, like our first overnight, several-hours-away field trip with the class. Oh, and her friends are all going out to eat on their own now, too. It's now my daughter's job to check out a restaurant, speak up there and if need be, avoid the place.

 The only reason I have ever felt comfortable with any of it is because I have worked with my daughter over the years, she's invested in her own health and I trust her to make the right decisions. Thank goodness, she is very strong and confident in avoiding what she needs to avoid and speaking up when she needs to speak up. Is it always fun or comfortable for her? No, of course not. But it's necessary and she knows this. Her attitude of taking charge of her allergies also means that she can do most things that she wants to do.

When she was young, I spoke up for her, paved the way and did everything I could to ensure a safe, healthy environment that was also emotionally healthy. I like to think that what I did helped her learn that its OK to take charge of allergies; in fact, not only OK but a vital part of our lives.

How do you get to this point? Prepare kids, but don't SCARE them. Not always easy, I know, but there are ways (see below). Your pediatrician or allergist is also a great resource here as they discuss (privately!) the ways you can teach your child, depending on their age and level of development.

Below are some strategies that I have found to be helpful when teaching kids self-management of allergies:

Teach your child to use their epinephrine auto-injectors. De-mystify those things as soon as you can and emphasize that if your child is in trouble, this device is their friend. Let them use the practice injectors as much as possible. My own child really likes the Auvi-Q with its voice instructions and shorter dosage time (5 seconds in the thigh as opposed to 10).

Take your child to the grocery store and read food labels together. Obviously take age and development into account but if you have a young reader or pre-reader, this is a great thing to do. To this day my daughter is a more effective label-reader than I am (but she's got young, sharp eyes, too. :))

Discuss cross-contact and why its difficult to know what is in a food prepared in someones home, or without a label.

Emphasize the "when in doubt, do without" rule. The golden rule of food allergies!  If you have questions about a food and you can't determine the answers, teach your child to just skip it. My favorite rule, ever. Just remind the kiddos, nobody wants to go to the hospital over a cookie or a piece of candy. If you're a really prepared parent, you've probably got a "safe" replacement with you, anyway.

Offer to have the kids work with you in the kitchen. Even little ones can do simple tasks like washing a vegetable or fruit. One of the unfortunate side-effects of food allergies is that some kids may become afraid of all food--and you definitely don't want that. Show them that there are still lots of good things to eat by having them help you cook.

Speak up in a restaurant with food allergy questions and let your child hear what you are asking and the answers you receive. If they are old enough, have them do the asking. It might be scary for kids at first, but once they get used to doing it, it really can increase their ability to dine out safely. Speaking up also teaches kids what types of establishments they may need to avoid.

Explain how to prevent allergic reactions using simple things like washing hands.

What it boils down to is incorporating food allergy management into your child's everyday life so that they come to learn that this is just the way they need to do things. Then, it becomes less of a big deal, it becomes part of your child's routine and once they are more independent, they will have to tools to navigate life more safely.

One note: If you ever think your child is getting overanxious about allergies and it's interfering with living their life or preventing them from doing things that could be done safely, then please read one of my blog's most popular posts featuring expert input from a therapist that treats kids with food allergies. 

Here is one of my most popular posts that deals with the topic of teaching kids to manage their peanut/tree nut allergy. Lots of good links in this one, too.

For more nut-allergy parenting help, check out my e-book, an Amazon bestseller on this topic, so thanks to all of you!

Valentine's Day!

It's coming up and yes, that means unsafe candy will be a factor. Still, if you are prepared, this is a fun holiday, even with food allergies. Check back to the blog soon about safe, nut-free Valentine's Day ideas. In the meantime, click this link for nut-free Valentine's Day candy ideas found at the supermarket, and this link for online nut-free Valentine's Day candy and sweet treats resources. If you're a Pinner, be sure to follow me on Pinterest: I've got a board for Nut-Free Valentine's Day with recipes and craft ideas.


Anonymous said...

Thank you so much for this post! My child will be going to middle school next fall and reading about your experiences makes it feel more manageable. And reminded me we are on the right track. Also appreciated the input on the Auvi-Q. Thanks again! Heidi

Anonymous said...

I landed on your blog by chance and really enjoyed reading this post. I have a 2.5 year old with severe allergies and am still trying to figure out how I'm going to "introduce" allergies to him. I appreciate you sharing your experience and hope to be as successful as you were.
- Pauline

Marie said...

Your advices here are really good, thanks for sharing! I have severe peanut allergy myself, and especially I can relate to the advice about becoming independent with your allergy. I am 23 years old, and my biggest issues regarding my allergy now is travelling. I just made my own blog together with my boyfriend focusing on travelling with allergy. Many people just gives you the advice "don't go", but I don't think you should let the allergy prevent you from exploring new places. So if you want to be inspired and get tips on how to travel safe - visit! Have a lovely nut free day.

Emily said...

Thank you for sharing this! I have two children with multiple severe food allergies and one of them is a "tween". I appreciate the advice and just hearing from someone facing the same obstacles is a big help. I have started a blog just for the purpose of sharing my recipes with my children and family so they will always have access when away from home.

H's mom said...

Thank you for sharing these wonderful tips! My 16 month old son is severely allergic to peanuts. It is 2am now and I've been awake with this anxiety about his safety. Reading your blog has calmed my fears a bit. Thank you.

Jenny said...

Thanks to all of you for chiming in and for your kind comments. It is my goal to help parents feel like they and their allergic kids can live a healthy, happy life and overcome any food allergy obstacles, so if any of my articles help you on that score, I'm thrilled! Best, Jenny

Red said...

I so appreciate your blog. I was researching other allergies, ran across it and have been reading. I was born in 1965 and grew up in an era where nobody had food allergies--or so it seemed.

I first got ill from peanuts as a toddler. My Mom saw there was a problem and never let me eat a peanut again, but even she (who'd worked in a hospital and had a degree in public health) didn't seem to understand that I could actually die from a peanut reaction. My Dad was downright careless, cross-contaminating knives from the peanut butter to the jelly again and again till I learned to just avoid jelly and keep my own stick of butter hidden in the veggie drawer. Away from home, it felt like everyone thought I was being a brat, hysterical, imagining things, etc. One friend's Mom, when I told her I was allergic to peanuts and would get really sick if I ate the stupid cookies she'd made, got mad at me and insisted I was lying or making up stories. She was on the verge of forcing a cookie on me when my Mom showed up. That was one of the few times I EVER saw my gentle mother lose her temper. I will always remember the fear and frustration of that encounter.

It was such an unenlightened world back then where life-threatening allergies were concerned. Thing is, even I didn't realize the reaction could go beyond severely uncomfortable until I was in junior high school. I began reading articles about people who had actually died from anaphylaxis. I called my pediatrician and discussed it with him; he answered all my questions and expressed surprise that I had not realized the seriousness of my allergy. It all just seems so bizarre to me now.

But although I would not wish my allergy on ANYBODY, I have to admit that the increasing prevalence of nut allergies like mine in the world has made life considerably easier and less scary for me. Thankfully, it's now a rare occurrence that I have to deal with someone rolling their eyes, repeatedly "forgetting" that I can't eat or even smell peanut foods, trying to get me to go to a Thai food restaurant anyway (because they want to and feel inconvenienced), or just plain acting skeptical and rude. At least now people usually understand and believe me! It's about damn time, too. Thank you again for your helpful and responsible blog.

Jenny said...

Thank you for your experiences as someone living with nut allergies when it wasn't as well known, and also for your insights as someone who has lived through it. Very helpful to us all!

Best, Jenny

Amy said...

We've been dealing with my son's nut allergy for eleven years, but you have a few points here I hadn't thought of that are really important! We home school our kids but they are still out in the community at classes, church, clubs, lessons etc. and there have been some scary moments. I'm just realising it's been a while since we've gotten out the epi-pen and reviewed how to use it (yikes). Time to fix that.