A good friend wrote a “secret, imaginary blog post” and sent it my way. I realized instantly it was a real blog post. But to protect her son and allow the imaginary (blog) to become real, she called upon her childhood and the beloved author Judy Blume, for help. She chose the pen name Veronica:
Then Nancy decided we should all have secret sensational names such as Alexandra, Veronica, Kimberly, and Mavis. Nancy got to be Alexandra. I was Mavis.
–Are You There God? It’s Me, Margaret by Judy Blume
Veronica is an awesome friend, a passionate researcher, and mom to two. Like all of us she has stumbled upon unexpected challenges in protecting her children from harm. In particular, protecting her son with severe food allergies. Her post helped me see more clearly what it is like to love and to care for and to support a child with severe and life-threatening food allergies. What it is like to wave good-bye for a day of school…and house worry. And really, what it is like to have no choice but to go well out of the way.
Enjoy her post. Tell us what you think. Share what you do to protect and support your own children with food allergies. If you’re looking for online information about food allergies, Veronica likes going to Food Allergy.org or Kids With Food Allergies:
Four Hours On A School Bus: Parenting & Severe Food Allergies
by Veronica Z
Four hours on a school bus. Because I go on every field trip. Because none of the teachers is certified to give my child his life-saving medication if he needs it. And yet he won’t need it today. But he might. And so I sit on a school bus for four hours. Bouncing along with screaming kids, singing kids, sleeping kids. My own kid sitting with his friends at the back of the bus while I sit in the middle of the bus, supervising other kids. Because he no longer needs me. Or no longer needs to sit with me, anyway. But I need him. I need him to live. I need to guard against every preventable accident. I need to think ahead to every holiday party, birthday party, unexpected celebration, and field trip. No matter how far into the countryside. No matter that there will be no threat to him today. No outside food. No unexpected snack. No candy snuck onto the bus by another kid. No reason for me to be there. Except that I’m a food allergy mom. I’m always there. The Zelig of pre-school, pre-K, K, 1st grade, 2nd grade. Room parent at the ready. Volunteering for every occasion where my child may encounter an allergen. Because I want him to live. And I don’t want him to worry too much. And I don’t want to be too much trouble to the teacher. And I don’t want to make too big deal out of this. But I do want my child to live. Four hours on a school bus today. That was our food allergy tax. It was a high tariff, but I paid it. Turns out I didn’t need to. But I didn’t know that this morning. I never know until it’s over. So I pay it every time. Every. Time.
There are silver linings. I “get” to go on as many pumpkin patch, museum, or musical theater trips as I can manage. I know the birthday of every kid in the classroom. I bring a home-made cupcake, like an offering, to every party. But it’s not for the birthday kid. It’s for my kid. I’m paying the food allergy tax. No store-bought shortcuts. It’s some other kid’s birthday, but I’m baking. I’m baking a whole batch of cupcakes so my kid has one safe one.
Here’s what I tell new acquaintances: Imagine a life with no take-out, no last-minute meal plans, no “hey, let’s just order pizza” or “let’s go out to eat.” We cook from scratch. We know the ingredients of everything we have in the house. It changes the way you eat. It makes you lose patience when a list of ingredients takes a long time to read. So you stick with less-processed food. Unless it’s Oreos. Because those are awesome. Shelf-stable sugar for those occasions when all your plans are for nothing. Someone decides that today is the day they are bringing in cupcakes. I’m out of town or out of flour, or sugar, or vegetable oil. No cupcakes in the freezer. Oreos to the rescue.
I read this post and I empathized with the effort, the unceasing vigilance, and the need to keep her little one safe. My compliments and admiration to you, mama, for making it happen day in and day out.
Sounds like our house…all simply because we want our child to live. I pay the tax everyday, my son has a snack box at school for the “unexpected” birthday snack and I pray everyday that I don’t get that dreaded phone call…we had to call 911 for your son, because he’s having an allergic reaction. YES, I pay the food allergy tax everyday and happy to, because I need my son alive!!!
Thank you for sharing. I live with the same thing every day. My four year-old daughter has a very severe peanut allergy. We discovered this when she was 18 months old and someone gave her a bit of a peanut butter cup candy. In less than two minutes she was gagging and gasping for air, foaming at the mouth, and turning red over her entire body. Needless to say we ended up in an ambulance that sped us to Childrens. Now I live with the fear everyday too. Her preschool is “nut free” and her teachers are trained to use her Epi-Pen in case a peanut sneaks in. But I am terrified of Kindergarten and the years beyond. She is so senstive, that even peanut residue on someone’s hands could set her off. How do I manage this without sitting by her side every day… at age 4 it’s still fun to have your mom follow you everywhere, but one day she won’t think its so cool. 🙂
I worry a bit that the increase in diagnosed food allergies are leading to an increase of allergy-flavored “vulnerable child syndome.” While I understand that it is a parent’s burden to worry and be vigiliant, the statistics on fatal anaphylaxis don’t seem to warrant such a high “tax.”
“A study of anaphylaxis deaths within a single US state from 1996 through 2005 reported approximately 5 cases per 10 million individuals in the population annually” Of course, the denominator you want here is your child, not everybody in the US, but still – a lot rarer than the media would have you believe. Even an actual case of anaphylaxis is only “fatal in 0.7 to 2 percent of cases.” (both stats from UptoDate) That’s nothing to dismiss casually, but also doesn’t seem to warrant one parent dedicating that much of their life to sit in at every school special event or trip. With a child-worn epipen and mandatory school staff training on appropriate use, it would seem reasonable that a “food allergy mom”‘s tax burden could be lowered. And be free to worry about the things that are statistically more dangerous for our kids, like the trips to and from school (car crasghes).
I hope your school be be willing to implement such training, and the resources above should help …
J- I find that you offer interesting statistics in your post. I would like to offer a “parent’s perspective” to go along with those. Even one death because of anaphylaxis Is too many, because it is totally preventable (with due diligence, ie: parent/staff present to control food in the environment, and administer life saving medication in the event of an emergency). I liken living with a food allergy with walking in a mine field. Most of the steps you take, you will be just fine, but make the wrong one and you pay with your life. I will do what I can to prevent an emergency, maybe you see it as too much, or overly protective, but this is my child walking that mine field, and I will walk it right beside her watching for missteps, epipen ready to go.
I realize your comment is 5 years old, but I must respond.
You present your cherry-picked stats in a very flawed, overly-simplistic way that misleads readers, and your comments reek of passive-aggressive, Mommier-than-thou judgement that has no place in the FA community.
You claim that the chance of anaphylaxis death is low, ergo, helicopter parents.
You liken the risk to lightening strikes, a cause of death not even remotely analogous. A more apt analogy is food poisoning. It is rare, and sometimes fatal, but makes people very, very sick when it happens. The best way to prevent it from happening is vigilance: food inspection, manufacturing standards, hand-washing, cooking meat to certain temperatures, preventing cross-contamination of bacterial surfaces, etc. Your lightning analogy makes it sound like anaphylaxis is a random thing that can strike at any time, and that’s not the case. It happens around food, just like food poisoning. And you take, in your own life, all of those overly cautious measures to guard against food poisoning, because even though it’s rare, taking all those steps greatly reduces the risk of getting sick, and worse, potentially dying.
If you were in a world where only your kid could get food poisoning because others were immune to food-borne pathogens, would you feel safe if people stopped washing their hands and cook surfaces? Stopped cooking meat, ate it raw and got raw, meaty pools of bacterial sludge everywhere? Stored food in insect-filled locations? No. You would not tolerate that. You would be vigilant to ensure that where ever your kid went, people washed their hands, cooked their own meat and your kid’s meat, and that food only came from places where it had been manufactured safely. And, because of those measures, your kid would be far less likely to get food poisoning. Now imagine that people start second guessing you. They’ve never cooked meat or washed their hands or thought about contamination. They can’t see E. coli or salmonella, so they secretly think you’re crazy for all this cooking and washing you insist upon. You know basic sanitation sometimes slips their minds, and that your kid could get really, really sick and potentially die if s/he got food poisoning. So, you take the steps, you intervene, you go on field trips and play dates, and miraculously, very few kids die from food poisoning. Of course, millions get food poisoning and spend weeks recovering, but to your logic, screw that! Parents worry too much.
So, unless you’re a terrible parent, you are VIGILANT. You take PRECAUTIONS. You don’t anonymously get on blogs pretending to have walked a mile in someone else’s shoes while passively aggressively judging them.
The reason anaphylaxis death is so low is BECAUSE OF THE PARENTAL VIGILANCE cited in this post.
Allergy Free Mom says
omg! we LOVE Oreos!! We would be lost at many birthday parties & school treats without them. *that’s the part of your post that brought tears*
Just know that you’re not alone. And even though we’ll never worry less, managing it does become easier. Its just who we are.
Lakshmi Priya says
Nice article, just reminding me about what I do with my food allergic son, who is allergic to tree nuts, peanuts & eggs. Today they celebrated his birthday with 2 other kids in his preschool and the other kids parents were getting some food for the party like Bagel, cupcakes and so. I knew I can’t offer that for my son even though its a nut free school/nut free preparation by other parents, I still have to make sure that they are safe and hence had to make cupcakes in the morning before I started to school, very new to baking tried something, made it look colorful and bought the regular ice cream that my son can have too and the waffle cones for the rest of the kids and cream cheese. Being a working mom, I also make sure that I am there for him during his field trips as a chaperone, and now waiting for his thanksgiving lunch in school. It’s a little hard to find substitutes in place of eggs in baking and finding some good snacks that resemble the ones that other kids bring for the party, but everyday struggle makes me grow stronger and stronger.
Kelly Morgan says
As a parent of a child with a life-threatening food allergy, I totally get this and I have sat in Veronica Z’s bus seat many times. For a while I had to wipe the lunch table off with a clean rag because a school administrator thought chlorine inactivated peanut protein and therefore the peanut-free table did not need a clean rag. It took going to the district 504 coordinator to solve that problem and I wish I had done that much earlier in the process than I did. And that leads me to the second part of my comment.
As someone who has advocated for protection and inclusion of students with food allergies and anaphylaxis in Washington schools for many years, I am so sad to hear that the school her child goes to is unwilling to administer life-saving epinephrine. Kids at risk for anaphylaxis at school are protected by federal laws – we should not be shy or embarrassed to ask and receive these accommodations – and even private schools who do not receive federal funding should do the right thing.
I just happened to have drafted a letter recently that will go out to school district administrators. I have included the body of that letter below. I hope that the resources there will be a help to readers who need to educate and motivate educators or caregivers on the seriousness of food allergies and on common sense, totally reasonable ways their safety and inclusion can be ensured. And I hope that someday, schools will be educated enough that that seat on the bus can be left vacant more often or can be filled by a non-tax paying parent.
Do you and your staff understand that students with anaphylaxis are protected by the Americans with Disabilities Act and other federal laws?
Anaphylaxis can kill. Parents who have concerns about the safety of their child while at school have good reason. School is a very high risk environment for students with anaphylaxis to food, latex and insects due to high risk of exposure and potential delays in administering epinephrine. While knowing how and when to administer epinephrine is the frontline for preventing a fatality, reducing risk and avoiding reaction is clearly the best approach to mananging food allergies in schools. Furthermore, finding creative ways to celebrate in class and at school that do not exclude or endanger students with anaphylaxis should be the goal of any school community.
2008 Amendments to the ADA – clarified that anaphylaxis qualifies as a disability under the law
Blog entry: When a school doesn’t get it – a useful example
Loudon County Schools Guidelines – great ideas on non-food celebrations that enables a classroom to include ALL students!
Take a minute to learn about food allergies and anaphylaxis!
The Food Allergy Initiative and the Food Allergy and Anaphylaxis Network have teamed up with folks in Canada to produce an amazing online training resource. While it is very important for teachers to understand how to keep kids safe and included in their classrooms, it is equally important for you as an administrator to understand anaphylaxis and what it means for food allergic students and their peers, families, teachers, and the school community. This online training video is a great start!
Make sure your staff is informed!
Do you know that there is a state law that requires districts to develop district anaphylaxis guidelines? Have you read the Administrator section in the Guidelines for the Care of Students with Anaphylaxis?
Here is your chance:
Finally, think about training.
As a member of the Food Allergy and Anaphylaxis Network’s (FAAN) Food Allergy Support Group Leaders Advisory Committee, I have been trained on presenting FAAN’s Safe at School Food Allergy presentation.
Safe at School Presentation- https://www.foodallergy.org/files/Safe_at_School_flyer.pdf
The Be A Pal presentation is geared for peers of food allergic students. The messages are clear and concise. As food allergic teens gain more independence, they often face pressure from peers to engage in risky behavior around food. Food allergic teens frequently express that they wish their peers understood the seriousness of their allergies. Educating peers about food allergies and anaphylaxis could save a life someday. I
Be a Pal Presentation – https://www.foodallergy.org/section/be-a-pal-program
Also, Seattle is unique in that we have a Community Health Nurse Educator at Children’s Hospital who will train schools, daycares, community centers, etc,, on how to recognize the signs of anaphylaxis and administer epinephrine. Ann Wahl is the current nurse in this position and I know she will be happy to talk to anyone interested in training.
I hope these resources are useful to some of your readers and maybe even Veronica. She is not alone on that bus seat and the voices of parents of food allergic parents fall on unsympathetic ears as just one more chorus of complaints. Thanks to Seattle Mama Doc for helping to share the human side of our struggles and the impact that this life-changing diagnosis can have for families.
Kelly Morgan, President
Washington FEAST, https://www.wafeast.org
Mail: 2400 NW 80th St., #315
Seattle WA 98117
Melissa Spence says
We live in the same world as you. This story almost brought me to tears. My husband goes on every field trip with our 8 yr old son, I bake cupcakes for every special occasion in class & yes we have the Oreo’s always!!! Our Alex is allergic to all dairy, nuts, tree nuts, peanuts, eggs, shellfish & avocado.
Sarah Boudreau-Romano, MD says
Yes. Every field trip. Every time. My son’s upcoming field trip is to a farm, a hands-on experience. So we’re talking chickens and eggs (anaphylaxis) and milking cows (anaphylaxis). My son doesn’t want me to go but I have to go… He promises that everyone wears gloves when they milk a cow, even the kids who aren’t allergic to milk. There’s always something.
Why in the world are your school’s field trips so far away? 🙂
Veronica Z. says
Wow. Thank you so much for all the comments!
Sarah: most of our field trips are not this far away – thank goodness! It was a special occasion that broke something inside me around the 3rd hour on the bus. I started writing this blog post in my head at that moment.
Kelly: thanks so much. I am a huge fan of FAAN and Kids With Food Allergies. Plus I’m a member of a regional food-allergy support group. At the school level, we were able to get the leadership to send some teachers to get certified in giving medication when our son first started public school, but the school district does not make it easy. For example, the training is offered once per year in the wintertime and the school must hire subs to cover the classroom for any teacher who attends the week-long class. Instead, in August every year, as soon as classroom assignments come out, I train my son’s homeroom teacher and as many other teachers and aides as I can in how to recognize the signs of anaphylaxis and administer the epi/antihistamine. Then it’s a judgment call. Some years I have complete confidence in my son’s teacher to handle any situation, from creating a safe classroom to saving his life, if necessary. This year, I don’t have confidence in the teacher.
Allergy moms: thank you for all your comments. I wrote this with tears streaming down my face, thinking “hey, I’ll just get this off my chest and try to move on.” I’m really glad I shared it with Wendy Sue.
I totally get what you are saying. I can’t trust anyone to understand the severity of my son’s allergies and I don’t them to have to see it first hand either. He is severely allergic to dairy, Egg and nuts and his preschool is NOT nut free 🙁 I go EVERY field trip carry hand sanitizer, wipes and water for the other kids to use. We love Oreos too 🙂 It’s amazing how much you appreciate the fact that you can get something from outside that you KNOW is safe for your child!!! I cried and took pictures the day he was able to eat chicken nuggets from Mc Donalds!!! He is now the envy of every pizza eating child at birthday parties!
Veronica Z. says
OK, so now comes the tougher reply to write. The one in which I carefully respond to “J” regarding his or her comment about an “allergy-flavored vulnerable child syndrome.” Kudos for coining that phrase – it captures the bitter taste I have in my mouth as I read and re-read it. My life is allergy-flavored. And as I wrote in the post, it’s not all bitter. But it’s not all sweet, either.
Kudos also for being honest. We need to get this sort of discussion out in the open. And J’s comment is more reasoned and well-written than most of its kind. I’m a lurker on a lot of online discussions about food allergy and I’ve noticed that it’s almost impossible to avoid this sort of assertion, ie, food allergy fears are overblown. I have started thinking we need a name for it, just like there is a name for the moment when someone evokes Nazis or Hitler in an online discussion (I’m not kidding – Godwin’s Law exists: https://en.wikipedia.org/wiki/Godwin%27s_law).
Maybe we should call it the Numerator Law. It’s the moment when someone asserts that the percentage of people affected by X is so small that the rest of us shouldn’t have to accommodate this tiny group. But what’s the calculation you’d like for your child or yourself? 1/1,000,000? or 1/1? And how about when the accommodations are reasonable (let’s not even talk about legally required)? It’s precisely that equation that I work with every day, calculating and re-calculating the safety of my child as he crosses the street, plays football with much bigger boys, gets into a carpool with a mom who I’ve seen run a stop sign, and eat a snackbar at a friend’s house that I’m pretty sure is the right brand. I laughed out loud when I read “vulnerable child syndrome” – if you could only see the risks my kid takes, with me on the sidelines, cheering. As I wrote in my previous comment, I do all the training I can. I leave epi-pens with every adult responsible for my child. I don’t want to be too much trouble. But, not to get too dramatic, I do want my child to live.
There is a great article about what it’s like to be a food allergy parent from the New York Times Magazine, June 10, 2001: “The Allergy Prison.” Here’s a link: https://www.nytimes.com/2001/06/10/magazine/the-allergy-prison.html?pagewanted=all&src=pm
I’ll end with this quote from it:
Parents of highly allergic children tend to know how annoying they can be and that they can come across as the most overly anxious people ever to hector a school nurse. For the most part, they don’t much care. To them, their obsessive precautions are the least they can do. When Amy Nathan goes grocery shopping, she checks every product’s lists of ingredients, reading every one of the millimeter-high words no matter how many times she has bought it before. The recipe could change, if only slightly. Then she double-checks that list as she unpacks the groceries, then triple-checks it once again before actually serving the item. She frequently follows up with manufacturers to grill them about their production procedures. (The F.D.A. recently examined 85 independent cookie and ice-cream manufacturers and found nearly one-quarter of their products contained ingredients not listed.) Her routines are part talismanic ritual, part doctor’s orders. ”I tell my patients, if people point at you when you walk down the street and say, ‘Look at that neurotic parent,”’ says Paul Ehrlich, a pediatric immunologist in New York City, ”then and only then are you being careful enough.”
Susan Clemens says
I also totally get what you are saying. I read the article and after every sentance a little voice inside my head kept saying, “Yes, but…”.
Yes, you go on every field trip, but what if you couldn’t because you had to work or had other children to watch?
“Because none of the teachers is certified to give my child his life-saving medication if he needs it.” Yes, but isn’t this enabling the schools to avoid stepping up and training the staff?
“I need to guard against every preventable accident. I need to think ahead to every holiday party, birthday party, unexpected celebration, and field trip. ” Yes, but shouldn’t we be able to expect our children to be safe at school? Isn’t this a basic right?
“No matter how far into the countryside. No matter that there will be no threat to him today. No outside food. No unexpected snack. No candy snuck onto the bus by another kid.” Yes, but can’t the schools adopt reasonable protocol to reduce the risk of exposure? Can’t we educate them?
No reason for me to be there. Except that I’m a food allergy mom. I’m always there. The Zelig of pre-school, pre-K, K, 1st grade, 2nd grade. Room parent at the ready. Volunteering for every occasion where my child may encounter an allergen. Because I want him to live. And I don’t want him to worry too much. And I don’t want to be too much trouble to the teacher. And I don’t want to make too big deal out of this. But I do want my child to live. Four hours on a school bus today. That was our food allergy tax. It was a high tariff, but I paid it. Turns out I didn’t need to. But I didn’t know that this morning. I never know until it’s over. So I pay it every time. Every. Time.
“No store-bought shortcuts. It’s some other kid’s birthday, but I’m baking. I’m baking a whole batch of cupcakes so my kid has one safe one.” Yes, but what if there are other kids in the class with different allergies? Why do we have to have consumables such as this at school?
I don’t want to take away from all that the writer does, or that we all do and yes, we do it because we want our children to live. But, we want our children to have the best education they can. In order for that to happen, they need:
– to feel safe and secure at school.
-to be respected by the staff and their peers.
-to be a part of the community and truly belong.
-the focus on the education.
For all of this to be accomplished, the schools need to know that our children are just kids. They can’t be expected at the age of 3 or 4 to be able to keep themselves safe-that’s up to the adults! Let them carry their emergency medication, learn how to recognize and react to a medical emergency, create policies and plans to reduce the risk of exposure of allergens, get the food and treats out of the classroom. Think of other ways to create lesson plans and run celebrations. Let our children be kids and let them come home safe at the end of the day.
It can be done!
I’m curious what the dynamics are among the other parents when they are informed someone in the class has a serious allergy – I’ve read articles pro and con about making classrooms peanut free and it seems to be a pretty gnarly issue.
My son is much older, and is vegan, so we have similar issues with food labeling. It’s interesting that the FDA doesn’t require/enforce compliance with product labeling. The bottom line is that you have to protect yourself, rather than rely on the “authorities”, i.e. school administration, teachers,federal government to watch out for your best interest.
We spend way more time thinking about food – shopping and preparation – than we did before his dietary conversion . Thank goodness for the internet – there are a lot of creative cooks out there sharing recipes for everything from cake and cookies to holiday feasts, that don’t use any animal products.
I sympathize with your situation, and hope for the best in your future. Odds don’t matter.
For those saying you worry too much – of course you would like to live in a world where you didn’t have to worry. You did not ask for or want a child with life-threatening allergies, and society is NOT ready to change enough for you to trust them with your child in their hands.
Letting your child be exposed to said allergen just because they will ‘probably’ not DIE, but have to experience another ‘terrifying’ event where they FEEL like they’re going to die is a stupid idea. Ever. Just because they statistically won’t die from it does not make it ok to let it happen or become ‘lazy’ or ‘relaxed’ in dealing with food allergies.
Love and support to all parents, especially those with special children.
Hi Veronica – I really appreciate your response. Please know that I didn’t mean “that the percentage of people affected by X is so small that the rest of us shouldn’t have to accommodate this tiny group”. I think you should be accomodated more than you are, with improved school staff training and procedures. And you’re not a tiny group – allergies are on the rise (even if you weed out increasingly common self- and naturopath-misdiagnoses of blood tests or food intolerances as anaphylactic allergies).
What I was trying to get at, imperfectly it seems, was perception of risk. I think that those of us without a food-allergic child underestimate the risk of fatal anaphylaxis, but I worry that you and some of the commenters are overestimating the actual risk of fatal anaphylaxis. Why would that matter? I think appropropriate vigilance and advocacy are essential, but having multiple moments of each day with “I want him to live (i.e. he’s likely to die)” at the forefront of your mind seems likely to crowd out other parental needs (that was what I meant about vulnerabel child). And obviously I’m not in your head, and perhaps the tone of the post was more poetic than literal about how prominently you perceive his risk of dying. So what do I know …
I just wish that the allergists were able to share some concrete and hopefully reassuring statistics about the risk of fatal anaphylaxis in a child like yours at the same time as they promote vigilance.
It’s a bit like conversations we have about the risk of stranger abduction. It’s in the top 3 parentally-perceived risks for their kids, yet is actually as rare as lightning striking your child. But that fear significantly limits our children’s ability to play freely, use active transportation, etc. That exagerated perception of risk has real harms. While there are common-sense things we should do to minimize the risk of stranger abduction, I don’t think that living in such fear of it as many parents do is warranted.
Veronica Z. says
Thanks so much for continuing the dialogue. Someone else asked what the dynamics are among other parents when they’re told a child in the classroom has food allergies — this conversation is one chance to hear from people who don’t have kids with food allergies.
I take your point that anaphylaxis is uncommon. Sadly, after 6 trips to the ER in his first 5 years, including an incident at school, I am again on the wrong side of the statistics. Actually, most families who have food-allergic kids at our school don’t take it seriously. There are 2 other kids with peanut allergies in my son’s class this year and only my son has an epi in the teacher’s cabinet. Maybe the other parents have had good luck and never seen their child go into full-blown anaphylaxis. Maybe they don’t know what their rights are.
And yes, the post was written on a particularly bad day.
Phew. I was feeling bad about causing offense. And in general, the allergists have an impossible job motivating adequate precautions without scaring the bejeezus out of parents.
And this issue compared to other childhood risks is notable for being one where rather than an illusion of control/safety you actually do, as a parent, have control, in many if not most situations.
The scary time, I imagine (and statistically), is adolescence when that control will be unwelcome and resisted – oy. I wish you and your son the best, and I truly apologize for making assumptions about or projecting onto your state of mind day by day. Thanks for the politer-than-they-needed-to-be responses 🙂
The overall statistics are relevant to a non-diagnosed child.
The chance of a fatal reaction are MUCH higher for a child that has already experienced several bouts of anaphylaxis. Though I stopped going on every field trip and attending every class party for my own sanity and logistics (3 kids; 2 with life threatening allergies), and instead insisted on a clear school health care plan (504), the worry is always there. If my child has an accidental ingestion, it WILL result in a severe reaction, and it could be fatal. A severe reaction will result in 2-3 epipens, a trip to the ER, hours of monitoring and breathing treatments, and a release with a week of steroid treatment.
So, yes, I resent the judgment I get from other parents who think food allergies are over-rated and parents are over-protective. Interestingly, I’ve seen more under-protective food allergy parents, with kids with diagnosed peanut allergy that don’t carry Epipens to birthday parties and eat bakery cake with parents not there and no cell phone left. THIS puts the birthday parent at much more risk than the overprotective parent hovering nearby in case of a contact or accidental ingestion.
Yes, many “Class Moms” and teachers, principals, etc. treat us with disrespect and give us a guilt trip when there are a few guildelines in a class such as handwashing or requireing packaged foods with labels as class treats rather than home baked goods, which can be very risky to kids with food allergies (and no, the kindergartner may not have the guts to refuse it, and the substitute teacher may not be trained on the situation). There were TWO deaths last December in Chicago schools and they were both TEENAGERS that ate unsafe foods.
There are many ways to include all children in a party — safe foods, non-food fun activities, games, crafts, etc. And all schools should have staff trained on Epipen. Children with life threatening food allergies can attend school safely and are protected under ADA.
It makes no difference what the % of risk is for fatal anaphylaxis – it bears no significance/burden in my rationale for my childrens’ safety. 3 of my 4 children carry Epi Pens and have had anaphylaxis because of hidden/undelcared allergies in foods.
I am compelled to ask Commenter “J” if she has ever witnessed a child in anaphylaxis shock? Grabbing their throat – unable to breath? I agree that through stories as this one, perhaps more schools will have trained delegates, better rules, safer standards. But, until that happens it is and must continue to be a hefty tax for those who don’t have such regulations/security/safety measures to ensure the safety/well-being of their child when the parents aren’t available.
With all due respect I worry about attitudes such as yours that are driven merely by statistics. It frightens me that because some feel that the risk of death by anaphylaxis is low, that many are over-reacting.
Your ending comments are troublesome, too. Some are anaphylactic to latex – a car crash may not kill, but the treatment may. But because you feel that more attention should be paid to the statistics that point to generalities of a “car crash”, assuming it’s not allergy related, are much higher —- you, again, discriminate against those who can easily die in a crash due to first aid treatment if they aren’t aware of an allergy by wearing a bracelet, etc. It frightens me to hear such emphasis on statistics, when they come from someplace, because somebody has died.
“I worry a bit that the increase in diagnosed food allergies are leading to an increase of allergy-flavored “vulnerable child syndome.” While I understand that it is a parent’s burden to worry and be vigiliant, the statistics on fatal anaphylaxis don’t seem to warrant such a high “tax.”
“And be free to worry about the things that are statistically more dangerous for our kids, like the trips to and from school (car crasghes).”
I think the biggest problem with food allergies is that the overall perception is that food is generally “safe.” I mean, we all know we shouldn’t let young children run around in a busy street, walk away with a total stranger, play with bleach or other cleaning products, but food is, well, FOOD. It’s for eating. How is anyone supposed to understand that a cookie, a slice of bread, or even a piece of fruit might kill one child out of hundreds or even thousands? Or send him/her to the ER, covered in hives, vomiting, and crying in fear? Add that to the idea that every child reacts differently to different levels of different kinds of food allergens, and may not even have the same reaction every time, and you have unbelievable misunderstanding. It’s very very difficult to convey this to someone who hasn’t experienced it, so the best we can do is to keep trying. Thanks for your attempt, Veronica Z!
bitter apple says
There is a difference between anaphylaxis, and the lesser allergies, such as full-body eczema, or simple vomiting and stomach ache.
My mother is allergic to peanuts. And cashews and sunflower seeds and wheat and dairy and chicken and spinach and honeydew and sulfites. Yet, in all of her 60 years on this Earth, she has never used an epipen, never needed one. Just because she has never used an epipen doesn’t mean that she isn’t allergic.
I got lucky. I’m just allergic to wheat. If you call wheat-dependant exercise-induced asthma lucky. I carry my inhaler around everywhere, in case I accidentally ingest some wheat before I exercise, or consume aspirin, or get sick (like you can plan that).
My first two children got lucky, the second grew out of her dairy allergy before 2 years old. My third hit the allergy lottery jackpot. Milk and eggs and peanuts. The eggs are not bad. He can actually touch eggs now without getting welts up his arms. The dairy, if he so much as touches a goldfish cracker crumb, his hand will get red and swollen, and he’ll get the little weals that you see on positive allergy skin tests all up his arms. Just from touching a drop of spilled milk. Yet dairy is only a “moderate” allergy for him, not requiring an epipen. No, his epipen is reserved for peanuts, and for good reason. There are people out there who are allergic to peanuts, like my mother, who will never need an epipen in their entire lives. Who am I to judge them if they don’t leave an epipen at school with their kids? I don’t know the extent or severity of their allergies. I know mine.
He’s not yet two. So give me a few years, and I’ll be the one sitting on the bus for four hours, wiping down the lunch table with a clean rag. As it is, I hover over him at parks. Halloween candy wrapper season is over (thank God!). Oreos are practically the only store-bought cookie the kid can eat, other than the even more expensive and scarce gluten-free dairy-free egg-free nut-free cookies. Constant vigilance is the result of experience, not paranoia. Unless you’ve experienced it yourself, how would you ever know? The one time that I forgot to read the bread label, is the one time they switched ingredients. I totally understand about judgment calls regarding teachers and babysitters. Some of them are trustworthy, and some of them aren’t. The food allergy tax is a high price to pay, but the misunderstandings on top of it make it just that much more difficult.
I think more parents should be paranoid and band together. The worst allergy story I’ve heard is of the mom who brought some benadryl but no epi pen for their kid to school. She’d only had a mild reaction to peanuts, should be fine. Kid touches peanut oil from a friend’s hand one day and her lips start to swell, turn purple, face flushes, she starts having trouble breathing. Luckily EMTs got there in time. Anaphyllaxis seems faster in kids. I wish all parents with kids with allergies would bring an epi pen as well as the benadryl.
I am wondering, Veronica, how it’s possible that no one on that school bus was CPR/first aid trained. In WA its required on teachers. I got trained after I had kids. While my kids don’t have anaphylactic reactions, my husband does. I felt the course covered the response in good detail.
Ethel Harris says
Here’s some encouragement for parents worried about what happens when their kids grow up and go to college. I overheard a college student talking about an allergenic roommate. “We made our entire dorm peanut free, because she gets a reaction even if it is in the air.”
Can this blog compile a list of colleges where students with allergies have been appropriately accommodated? If someone has had a good — or a bad experience, that college could be on The List.
Thanks for sharing this. I think you make a good point that the younger generation doesn’t tend to invoke any of this “Numerator law” logic that Veronica coined. They hear of an allergy, they understand its ramifications and they respond with compassion (it seems). There doesn’t seem to be any claiming that the allergy is imagined or overblown or impinges on their rights, they do what needs to be done without employing a balancing test or blame. I thank you for reminding me of this.
One of J’s comments included this concern about allergic kids reaching “adolescence when that control will be unwelcome and resisted.” This distracts from the potential danger of allergic reactions and makes it sound like the problem is simply moms with control issues. Some kids may rebel against their allergies because no one wants to have allergies, just as no parent wants their children to have allergies. However, the statement seems to misunderstand how uncomfortable to downright terrifying a reaction is for the person experiencing it. My DD is anaphylactic to peanuts, her few reactions begin with multiple episodes of vomiting followed by respiratory issues and then skin issues (though we’ve never experienced the throat closing that is often viewed as how anaphylaxis occurs). So far, she has been incredibly mature about managing her allergies and she is 11. If she doesn’t know it’s safe, she doesn’t eat it. Combine this with Ethel’s comment and I am greatly relieved that she will probably not feel the judgment from her peers that many allergy moms feel today.
I wanted to mention the many references to Oreos – we also love them, too, and consider them safe, but I do get worried that there is a line of Oreo with peanut butter flavored filling. Perhaps there is a separate dedicated line for those. We love Dare products because they are made in a peanut and tree nut free facility (though may not be safe for other allergens).
Thanks so much for a great post and sharing your thoughts. Thanks also to all the commenters. Sometimes I feel I am in a unique position because I was a mom for nearly 6 years before I had (or knew I had) a child with life-threatening food allergies. I know what its like to wonder why I have to give up my beloved peanuts. Now, I’m embarrassed by my selfishness. How hard is it to forgo something for a limited time to protect the health of others? How hard is to take simple precautions that might drastically reduce the risk of a severe reaction for others? Why are so many unwilling to take these steps? Do they fear the erosion of their civil liberties? Because I think there may be greater dangers than requests to accommodate those with serious allergies.
By the way, if it is ever too much dealing with the schools, homeschooling has been a great option for my family. We started to homeschool before I even knew my daughter was allergic to peanuts, but every time I hear school horror stories, I am glad we don’t have to deal with that. My daughter has self-carried her Epi from a young age but since we are together most of the time, she doesn’t often have to. Anyway, there are many ways to homeschool, many reasons for homeschooling, and many supportive groups – chances are you could find a supportive community that fits your style. Just something to consider.
Ethel, I think that FAAN’s website (maybe the teen one ??) may have that info — They have volunteer students helping on campus and also helping to guide new students regarding allergies/cafeteria experiences, etc., before they apply.
My two older children reside on campus (latex, tree nuts, plums & bees) and the “allergy letting go” wasn’t too difficult because we paid that hefty “tax” prior years. ensuring not only their safety, but educating my children + those around them, esuring my kids were educated about their allergies, not different.
Carrying an Epi Pen/inhaler/Benadryl is now just a part of their lives living on campus. Mom’s not there to protect them, but she was there to form the most important basis in their formative years, so their allergies never caused them “fear”, rather acceptance.
Have you been spying on our life or reading my thoughts? This article brought me to tears. It summarizes our life and says what I have been trying to get across to friends and family in three clever and tender paragraphs. I will be passing this along too everyone I know.
As a parent I would be right along side you protecting my child. As an educator I am trained yearly on administration of epi-pens with training of symptoms, signals and concerns. I go through check out policies and paperwork to bring medication with me on all trips, keep medication and child near me at all times and educate all children about allergies. I am concerned that these safeguards aren’t in place at your childs school and urge you to talk with the nurse and administrator so you feel your child is protected.
Veronica Z. says
Thanks for the latest comments!
I heard a new story about a field trip that I wanted to share. A mom friend of mine, whose child does not have food allergies, was recently a chaperone on an all-day field trip. It was one of those trips involving a pre-dawn gathering, fancy buses with bathrooms, and an entire grade of kids — in this case, about 100.
When they arrived at their destination, my friend noticed that one teacher had a bag jumbled full of epi-pens and inhalers. The teacher had been trained, all the equipment was there, but she (the teacher) was freaking out that she was holding so much medication and was responsible for so many kids. They hadn’t planned for this. Luckily my friend is a trained EMT and talked the teacher down, assuring her that she would help her if an emergency came up, but of course your mind goes to any number of nightmare scenarios.
It underlined the fact that even a “prepared” school can have lapses.
There have been occasions when my husband or I can’t go on the field trip, and I have deputized a mom friend to be my kid’s mom-for-the-day. I train her and trust her.
I’d love to hear other people’s strategies and tips.
Wendy Sue Swanson, MD says
What about developing a check list for field trips? A series of steps and checks that a teacher/chaperone completes prior to allowing the bus to leave the parking lot. And another prior to their return home.
Make a universal, online-and some-what customizable form and make it free and easy to find.
They work in health care arenas. Even when checklists seem silly (asking the patient which kidney is to be removed–“right or left?”) they prevent errors. Checklists also often help us feel in control, cohesive, and aware of what is expected of all of us in diverse roles. Therefore, when the unexpected comes, we approach the problem with confidence, together.
I think about this like I think about the advice I give new families members and CPR classes. I think all new parents should take CPR. Not only to learn the technique, but more for those new parents to gain confidence in their ability to respond in an emergency or disaster situation. Feeling more prepared goes a long long way.
As an elementary teacher, if one of my students had a life threatening allergy, I would be relieved to have a parent as diligent as you! I do care, but allergies are not my area of expertise. And on a field trip with 100 kids, I would be very overwhelmed by a bag full of epipens and inhalers, not to mention the zillion other things to worry about on field trips. So I thank you for paying the tax, and helping to keep your child safe! One year I had a child (of two doctors) with diabetes, and I learned so much that year. But I was always so relieved when the parents were there for the field trips and parties!
I totally empathize with you and appreciate your post. I am a mother of a elementry school student with Type 1 Diabetes (who also can’t have cow’s milk). Only a parent, registered nurse, or paramedic can administer a life saving glucagon shot (that she carries on her at all times) to my child in the event her blood sugar goes so low that she passes out. Most schools don’t have a full time nurse these days. I too have to bring cupcakes to birthday parties and go on all the field trips and know how many carbs are in everything. Thankfully I’d go on all the field trips anyway. I understand.
Dot Smith says
Does a parent have a right to attend the field trip? are there any laws in place allowing the parent to attend when the school will not allow the parent of a student to attend?
9 year old son
No 504 plan in place
contact allergic to tree-nuts, coconuts, sesame seeds
teacher will carry epi/benadryl
Wendy Sue Swanson, MD, MBE says
Unsure if there are laws in place for this at the state level. Really does feel to me that it is your RIGHT if you are concerned about your son’s safety.
Can you enlist your pediatrician for advice and/or support?