Food Allergies

Food Allergies have been a big topic this week. Lots of other bloggers have written about FA, most of them better than I could.  But I thought I'd take a stab at it anyway.

My son Gabe is anaphylactic to tree nuts, peanuts and coconut.  In simple layman's terms, if he injests those substances, he could die.  Pretty scary.  Everyone knows what that means.  But, unless you have a child with severe food allergies, you have no idea what this level of allergic reaction means.

Severe food allergies means that you must be vigilant, every single time.  It means that you have to teach your child that food from anywhere, from anyone, is not safe.  It means that you have to read every single label of every single food, every single time your kid eats it.  It means that you have to stand up at back to school night and introduce yourself, and explain food allergies to the other parents, some of whom do not care that a single nut in a food could kill your child and instead, you have to hear about their annoyance with your insistence on having labeled foods in the classroom.  It means that your child sits at the nut free table in the cafeteria, even if no one else is there and he has to sit alone.

It means that you cannot leave your child for a playdate, unless that parent agrees to be responsible for your child, for being certain that your child won't eat anything that he could react to, and teaching that parent how to use injectable epinephrine.  It means that you have to tell the other parents to check with you if they send in treats, and teach your child not to eat something someone else offers, even if they say it is safe.  It means teaching a 5 year old how to read the allergic words first, before any other words, so he can check his own labels.

It means calling food manufacturers and pestering them to tell you their exact ingredients and the processes that they use to clean their lines.  It means signing up for emails in your inbox that come to you, saying things like this:  Whole Foods Market is recalling 3-oz. "365 Organic Everyday Value Swiss
Milk Chocolate Bars with Rice Crisps" due to undeclared hazelnut, walnut, and pecan.  And knowing that, even if you had thoroughly read the label and fed your child this cookie, it would have meant hours and hours in the emergency room and possible long term health consequences. 

Having a child with food allergies means that you can never visit the ice cream truck, because there will never be anything safe for him.  It means taking a Hershey bar with you to every birthday party, because odds are, he can't eat the cake or the ice cream.  It means that every time your kid comes down with a new problem - migraines, for example - you have to wonder if he's developed a new food allergy, or if the increased eczema is due to an unknown exposure.

It means calling every restaurant, every movie theater, every place that your kid eats to ask about food prep practices and ingredients.  It means educating the local ice cream parlor on clean scoop procedures, a policy that the 17 year old behind the counter couldn't care less about and has no desire to actually follow.  It means putting entire restaurants off limits, when a request for a nut free salad is served to you with both almonds and walnuts.

It means that your nightmares involve an accidental exposure.  It means looking like an idiot while you read the labels at Scout functions, knowing that of 50 dishes offered, only one will be safe - the one you brought.  It means packing a lunch whenever you take your child somewhere, just in case.  It means never going anywhere without two epi pens and a bottle of Benadryl, and knowing that the laws for your state mean that paramedics can't inject your child - you must do it yourself.  (PLEASE read the tail end of the comment section, where Elleoz called my facts into question and I posted a clarification.  AT NO TIME am I saying do not call 911 if you are experiencing anaphylaxis - I am NOT a doctor and did not write this post as such.  I am a parent - an informed parent, but a parent, nonetheless.) 

It means being heartless when your kid cries because "There's nothing safe to eat here!"  and reminding him of the alternative, and listing how many things he really CAN eat.

It means knowing that, no matter how hard you try, your child will invariably feel left out and not normal.  It means knowing that other people  - those not affected by food allergies - will never understand, never be as worried, never be as watchful as you, and may make fun of you for your concern.

It means reading and checking, EVERY SINGLE TIME and NEVER EVER CEASING YOUR VIGILANCE.

But if that's what it takes, I'm doing it. 

Comments

[Zany Mama]

So, yeah. That's pretty much an accurate picture of what life at our house looks like as well - a bit depressing really when I read it in black and white and yet also strangely validating.

Sometimes it makes me a bit sad that my son has never been to an ice cream parlor (he's allergic to peanuts, tree nuts, dairy, and egg). On the other hand, I have a child who has never had a piece of candy, so I guess there will probably be some long term health benefits to all of this.

Thanks for the post.

[Tammy/Photography for Fun]

Wow! I commend you for your vigilance, but how awful that you have to be. You make me so very thankful I've never had to be.

[Julie]

It's all of those precautions - and the horrifying risks you face, whether you're vigilant or not - that most of us without food-allergic kids simply don't understand.

Thanks for taking the time to spell it out.

[Marti]

I don't have a child that has food allergies, but I do have a child that has cystic kidneys which means I'm perceived as a neurotic germaphobe. Um, yeah, because one good flu bug, or bout of food poisoning could shut my child's one functioning kidney down and kill him in a matter of hours. Anyway, just curious, how did you find out about your son's allergies?

[Anna]

We're fortunate to be just lactose-free. I have friends in the FA world, and even though I know I'm more educated than most, I know I still can't imagine or be as careful as they are.
Thanks for sharing this piece of your world with us.

[mimbles]

I had friends who we only see once or twice a year come to a party at my place on Saturday and it wasn't till half-way through the night that they told me, much to my horror, that they'd discovered their 2 year old was allergic, and probably anaphylactic, to peanuts. Nearly every food in the place would have been very bad news for him. Thank goodness he's a clingy kid and was being held by one or the other parent the whole time. My heart goes out to any parent who has to deal with this sort of worry on a daily basis.

(Also, next time they come over I'll be reading labels obsessively and making sure we have a safe environment for him)

[Liz in Seattle]

It's been folks like you who have taught me caution. Now in every single social grouping (no matter how informal), if I am providing food, I must absolutely ask about allergies. And then if there are any scary ones, I must provide packaged, sealed products, on recommendation of the parent.

Unfortunately, these are limitations I put upon myself, and aren't always considered by others. I started this after a friend's daughter was breathed on by her dad, who had just eaten a peanut butter sandwich. She stopped breathing on the way to the ER, but she was revived, thank God. I'll never take this stuff lightly again.

[Audi]

I can relate in some way. While I don't have children with any severe allergies my sister has the same reaction to shell fish (shirmp, lobster, crap etc.) She has to watch what she eats. Even the slightest exposure to shell fish can put her in the ER. French Fries fried in the same oil and shrimp is bad news for her. My heart goes out to you!!! Keep up the vigilance. There are people out there who do understand.

[mary]

What a pain in the butt. I cant imagine with all I have to do (and I have one less than you and no real job!!) having to do this as well! The only allergy we have is my youngest cant have milk, makes her snotty. :) She can have cheese and stuff though. She never liked milk so it works out, she loves soy. (yucko imo but I keep that to myself) I cant imagine some people dont care, I would totally follow those guidelines for the safety of a child!!

[Kyooty]

My husband has taught me to be vigilant, we went ot a Christmas party once, he had the lasagna, with mushrooms, his face swelled up! now i'm the one saying does it have mushrooms at everything we go to, I'm the one washing the knives when we cut pizza, we're the nut balls asking the pizza place to leave the pizza "uncut" and saying mushroom allergy wash all utensiles before making our pizza. I'm the one that LOVES mushrooms :( we have a white spatula for hubbie's lasagna and a black one for "death" for those that want the one with mushrooms. We went out one nigt for my birthday, and had t leave because someone next ot us ordered the "sauted" Steak on one of those platters where the mushrooms are still frying themselves. The smell set him off to breathing troubles We got out and air and had his epi at the ready.
My kids are sensitive to dies, and apple juice,

[FishyGirl]

I am allergic to green beans, peas, and rice. Do you know how many products have rice, or rice flour, or rice vinegar in them? I don't get anaphalactic (yet - the allergist thinks I'm headed there, so I still have to have the epi pen), but I get severe migraines just from the air in my kitchen if my DH uses his rice cooker. I make him use it on the deck outside.

The thing that gets to me are all the people who have the attitude of "Oh, she's just being a pain" or "lets slip some rice in her food to see what happens" or "One little bit won't hurt." I just don't get how anyone could be so inconsiderate and ignorant, I really don't.

Great post, Carmen.

[Charlise]

You have written this very well. Very, very well. You say that many people have said it better, and well, I disagree. Can I do that?

I don't have a child with food allergies (that I know of - knock on wood) but I still loved this. It shows what you go through for your children, what sacrifices you make, and we all need to recognize that. It makes us feel good to see how worth it all of the craziness is, right?

[AmyB]

That was a brilliant post that made me cry, primarily because you nailed the issue completely. My lovely, 3-year-old Emily, is anaphylactic to peanuts, and cannot have tree nuts either per the allergist even though she has not actually been tested. (Cross-contamination issues, high likihood of allergy etc.)

Everyone minimizes the issue because she has not had a reaction since her initial exposure at 13 months. This makes me want to scream, because this is only true because I have changed my entire life and my families entire relationship with food...so right, no biggie...

Also we are travelling to family for the holidays, and I have actually had to say, "no, you can't give the dog his meds in peanut butter, because if the dog licks Emily we are going to have to use epi pens and call 911!" Clearly I am going to have to be in the kitchen reading labels all the time because no one gets it, no matter what I say.

I would love to be laid back about all of this, but I can't because I am her whole defense system. I have had to educate the preschool, and I know I am now a "high-maintenance mom."

This whole thing is just exhausting. Thanks for writing about it so well.

[Kikilia]

Sounds like life with a diabetic child.

Growing up with my younger brother- we were taught to read labels, read labels, read labels.... Not to let him eat anything without clearing it with my mother first... For him to learn what he could and couldn't eat...

I think, because I grew up like that, I try to be considerate of other parents/kids with food allergies or food differences.

I just wish everyone could be considerate and think of others when it comes to food allergies or food intolerances (my kid is lactose intolerant).

Well said.

[Liz]

Not so much a food allergy, my oldest (she's 14) suffered from high fevers from the time she was 8 months old and stumped the doctors with no other symptoms, besides a rip-roaring temperature.

Twice a month, she was sick and missed 25 days of kindergarten.

At that time, we learned that her immune system was reacting to food products from animals shot up with antibiotics and hormones.

We switched to soy milk early on and I am thankful that at least there are a lot more choices for parents with children who suffer from food-type allergies.

Great post!

[Laura]

What an amazing post! While I do not have a child with severe food allergies, we do suffer from mild lactose intolerance. I only have 2 (so far) and the youngest is lactose intolerant and will throw up milk unless it is soy or lactose free. He got it from me.....

Though none of us personally suffer from FA, my best friend discovered during our senior year of high school that she had acquired a shellfish allergy. We had shrimp one night and she swelled up with huge welts on her face and breathing troubles (she had another reaction several weeks later before we realized that it was actually the shrimp she was reacting to). Since then she has had to be diligent about nothing with shellfish or cooked in the same oil as shrimp, etc..... I am one of the parents out there that takes food allergies VERY seriously. I babysit 3 other children and fortunately none of them have any known allergies.

I hope some of those "unconcerned" people read this post and see just how much it changes your and your family's life when you have an allergy.

[steph]

absolutely wonderful post.

[Annika]

The worst reaction I've ever had to food is a stuffy head after too much dairy. Reading this post I felt, for just a few moments, what it is like to live with food allergies - something I have never imagined. It is a powerful and terrifying feeling just to read about it. Thank you for helping me to understand what it's like.

[Jennifer]

How did you find out that Gabe was allergic? I'm just curious because none of my children have allergies. Did he have a bad reaction as a baby to peanuts? Do they ever recheck the allergies? My kids have all had peanut butter, but none of them care for tree nuts or coconuts. So I probably wouldn't know if they are allergic or not, right?

[christie]

Thank you for a wonderful post. As the mom of a 4.5 year old with anaphlactic dairy FA, I know where you are coming from...he only eats food we have prepared, takes his own snack/lunch to school, etc. We make/bake everything and keep in the freezer so that he can have dairy free pizza, cupcakes, etc when his friends have them at school. Best of luck to you and yours!

[Izzy]

My daughter is peanut allergic and I'm so relieved that for the past 6 years, we've managed to avoid any anaphylactic episodes. But she spends a lot more time away from me now and that's just another source of anxiety because frankly, people who dont have FA kids often seem not to give a shit despite my telling them that it's not just a runny nose or itchy eyes; that allergies can KILL. How those words could not register with another parent is a mystery to me...

[Elizabeth]

We don't have any FA in our home, we have animal dander allergies, and the reactions are similar (I get hives from a panting dog near me, if it licks me, my skin blisters and I start anaphylaxis, my kids aren't as bad off but 2 of 3 have had ER trips for these and carry epi-pens). I have had relatives tell my kids it's all in our heads. I have people tell me how their dog is not allergenic, or they vacuumed, or suggest I'm really afraid of dogs. My teen daughter babysat for a family that said they didn't have a cat when they did, because they locked the cat in the basement while they were gone and didn't want her to say no. So, today you gave me that "there's someone who understands" feeling as well as the "there's something that would be worse" feeling. So sorry you have to cope with all of this. It often feels the social part is the most challenging.

[Cindy]

Thank you for writing this. It is hard to relate if you don't have to worry about this. No one in my family is allergic to nuts, but it does help me to understand about a little girl in my son's class. Thank you for telling us about this.

[April]

I cried when I read this because it shows that I am not alone in my vigilance. My 2 year old son has peanut (other nuts that I haven't had tested too), egg and soy allegies. The peanut is a level 4 (epi pen is always in my purse and diaper bag), egg is a 3 and soy is 1-2. Yeah, it is just so comforting to not be along in this, thank you for posting this! I have indeed learned that home is the safest place...but of course you can't always stay there. Anyway, thanks for your encouragement!

[angie]

How scary that must be! We kept my niece a few summers ago, and even her parents were unaware of her nut allergy. After she left our home, she was exposed to nuts at her daycare provider's home and rushed to emergency. It is terrifying to know that food allergies can be so dangerous. And injections are pretty dangerous too, aren't they? Is there any chance your son will outgrow his allergies. You are a very good mother, and may your diligence be greatly rewarded.