What it’s like to parent a child with an anaphylactic allergy…

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by brenda on March 29, 2018

Our sweet oldest daughter is 10 years old. I’m so thankful to have her. She was diagnosed with an anaphylactic peanut allergy when she was 3 years old. We’ve lived with this fear for 7 years, though we didn’t understand how scary it really was for the first few years. I thank God that He protected her in our ignorance.

Over the last 7 years, we have learned that she reacts to foods that were cross contaminated with peanuts but not labeled for it. We’ve learned that companies are only required to make allergen statements on packaging when there are definite allergens in the product. If the food was manufactured on the same equipment, or even “may contain” a top allergen, a company gets to choose whether or not they will list that on their packaging (and many companies do not). We have also learned that she reacts to airborne peanut exposure. She’s had hives a couple of times just from being next to someone who was eating peanut butter, or from being in the same room as a peanut snack.

We take her allergy seriously, and we have to live a cautious life in order to keep her alive. An anaphylactic allergy response will not be the same each time, and often these kinds of allergies get worse over time. I read so many stories about food allergy deaths. I know I shouldn’t read these stories–and yet, those stories keep me alert, cautious, and  always carrying the potentially life-saving epipens. I say potentially, because there are even stories where the epipen “wasn’t enough” or wasn’t use soon enough, and a child died anyways. I worry about that kind of situation for her.

Here are some things that we have to think about that the average family does not even have to consider. I share this to bring awareness.

  • Everywhere we go, our 10 year old daughter has to carry a purse with 2 epipens in it. I have been known to turn around, even many miles down the road, just to get that purse. I remind her daily how important it is to keep those epipens with her. She needs 2 epipens, because sometimes 1 is not enough, and sometimes an epipen will wear off before emergency responders arrive.
  • I carry at least 1 epipen in my purse as well, and I still make her bring hers. Maybe this sounds like I’m a “mean mom,” turning around and treating it seriously if she did not bring her epipens–but I want her to get in the habit of being responsible enough to bring her epipens with her everywhere. So often, the fatal stories I read about go something like this “and he didn’t have an epipen with him…”  🙁 Note, I really should carry 2 in my purse, just in case.
  • I research every brand of every package of food that enters our home. Grocery shopping sometimes makes me cry. Really. I stand in the aisles looking up every potential new brand on my phone. Do they label for cross contamination? Are there peanuts in the same facility that the food is manufactured in? Is it safe for my little girl to eat? I check every.single.food. This means the olive oil, the spices, the tomato sauce–every single item we use–is checked by me and to the best of my knowledge I know it’s safe for her. Even TEA can be cross contaminated with peanuts!! She loves drinking tea every day & this was one of those items I did not expect I would need to research (until she had a reaction! Note, peanut-allergy sufferers, hibiscus tea is likely intercropped with peanuts…I had no clue.).
  • We have to analyze every kind of prepared food at the grocery store, and don’t trust many…In the meat department at our local New Seasons, they make a Thai peanut sauce and marinate some chicken in it. I used to buy a lot of meat at New Seasons and stopped when I saw this. She doesn’t get to eat the free cookie from the bakery like so many other kids in our country. The bakery probably makes peanut butter cookies, too.
  • We don’t allow peanuts in our home. I have to share this disclaimer with all the people we host. We had an ice cream buffet for our daughter’s basketball team recently, and I had to make sure that everybody knew, multiple times, not to bring any peanuts or peanut-containing products into our home.
  • I like people to remove their shoes at our home, because I don’t know if they’ve stepped on peanuts or peanut shells. I want our home, at least, to be a safe haven for her. So much of the world is scary for her. I want her to be able to do cartwheels all over the house and spread out across the living room rug and cuddle with our dog without fear that one of her potential death-triggers (a peanut particle) might be near her hands or face or nostrils.
  • She doesn’t go trick-or-treating, and she’s afraid to attend harvest parties. At Halloween there is peanut butter everywhere! She’s afraid to touch the games at the harvest party because she might touch something that someone with sticky peanut butter hands just touched.
  • We only dine out at specific restaurants I’ve researched, and even then she is scared. When she asks for plastic utensils, I don’t make a big deal out of it. Sure, anything to make her feel relaxed and comfortable and able to eat. We don’t eat at restaurants that serve any kind of peanut/peanut butter anything.
  • She had to miss out on a big school field trip because of her peanut allergy once, and this will likely happen again in her life. (I have mostly homeschooled her because 1. I like to homeschool and 2. I’m freaking scared of other people managing her allergy safely!) For 1 year, she went to a 2 day per week homeschool supplement program. Her teacher planned a field trip to walk with the class to a local Chinese restaurant. I told the teacher that my sweet girl would not be able to attend, as there are peanuts and peanut oil in the food and air at Chinese restaurants. The rest of her classmates went to the field trip, and I picked up my girl and brought her to Spaghetti Factory for lunch (which is peanut free). I made it special and let her get an Italian Soda & whatever she wanted to eat. She sat there and cried, because she just so badly wanted to be with her classmates. Food allergies are so isolating.
  • In every program & activity she participates in, I have to make sure all adults know that we need it to be a peanut-free environment for her. If they cannot accommodate, she cannot participate. I’ve had to battle the annoyed phone call from another mom: “Really? No peanut butter? What do you expect my child to eat?” Ugh. I don’t know, but if yours eats peanut butter, mine might die…
  • One time, when people were giving peanut butter cups to their kids anyways & our daughter was already participating in the program, both she and I were scaredShe was in a musical, and even though people were not supposed to bring pbj’s for lunch, etc., there were peanut butter cups and peanut m&m’s at the concession stand. Kids were eating these treats back stage, and then going on stage with her. They would dance together, hold hands & hug like little girls do, and they would touch the same props. It was a nightmare for an allergy mama!! I watched her on stage anxiously, looking for hives, watching for signs of distressed breathing. When she wasn’t on stage, I left my seat and went back stage to check on her. I felt panicked. I could not sit back and enjoy the show. Thankfully, the policy was changed after that and peanut butter/peanut candies were not allowed backstage. 
  • I make sure all adults I am leaving her with know about her epipens, understand her symptoms, and are aware how to use her epipen. Sometimes people seem over-burdened, scared, and possibly annoyed  (though maybe that’s my interpretation, as I’m pretty sensitive). I would not feel safe leaving her anywhere with any adult without preparing them for a potential fatal reaction.
  • She brings a sack lunch to all potlucks. We don’t know if people prepared their food on a counter next to where a pbj was freshly made. We don’t know what ingredients they used. One bite of potluck food could equal a big reaction or death for our girl.
  • When she goes to Birthday parties, she brings her own cupcake & treats. I try to find out what the other kids will be having & get her safe treats she can have that are equal. Inevitably, there is always disappointment, because the other kids got ____ and she couldn’t have it. 🙁
  • When kids bring cupcakes to class or to an activity for their Birthday & I didn’t know in advance, she gets nothingMost of the time I make her something after we get home, but at the event, she watches other kids eating the yummy cupcakes with sprinkles & feels sad.
  • I feel awful “rejecting” other people’s foods. I have Celiac and have to avoid gluten, as well as some other food sensitivities, so my food “issues” along with her allergy make it hard to accept treats from friends. We do politely accept them–but she and I do not partake. Our first Christmas in this home, our neighbor lady brought over a tray of cookies & it included some peanut butter cookies. I promptly handed the tray to my sister-in-law (after the neighbor left) and asked her to take it home with her. I feel bad for situations like this–I can’t say to the neighbor, who worked so hard on those cookies “yum, they were so good! What’s your recipe?” We miss out on that kind of connection that happens over food. I feel sad thinking our friends/neighbors worked so hard & some of us could not eat their gifts.
  • If we decide to fly anywhere, we have to find a safe airline, alert them of her peanut allergy, board the plane early to clean the seats and tray ourselves, and pray that nobody eats peanuts or a peanut butter snack in close proximity to her. If an airline lets us pre-board to clean her area, it’s a good airline. If they’re willing to forgo serving peanut snacks, that’s even better. If they’re willing to announce that there is a serious peanut allergy on the plane & to keep all peanut snacks put away on the flight, the airline is amazing!
  • A Road Trip across the country scares me. I really want to take a trip like this with our kids before they all graduate (and we will have a junior next year). The idea of being in one of the “middle states” with none of the chain restaurants we know are safe & possibly few of the brands I know are OK scares me a lot. I know just from having Celiac & trying to dine out in some states, how hard it can be. They look at me like “What’s gluten?” and a couple of hours later I pay for it for trusting their food….At least eating gluten won’t kill me on the spot (it’ll take years of damage). A peanut allergy can cause a fatal reaction right away, so we don’t want to mess with that.
  • When we go to theme parks, we hope that we can bring in our own food. Rarely, they will have safe foods to purchase in the park (Disney is the only theme park I know of with safe food). If they don’t let us bring in food & their food is cross-contaminated, we have to leave the park in order to feed our daughter.
  • We have to sneak food into the movie theaters. The only way I know to keep her safe is to bring food that I’ve researched, that was not touched by someone who has also been handling Reeses Pieces. Even still, I worry about exposure from sitting in theater seats and touching the arm rests.
  • I worry about her exercising after she eats anything. Exercise increases histamine levels, and so do allergies. Eating an allergen or a contaminated food and then doing cartwheels and dancing all over the house (like she does every.single.day.) can be dangerous. I hate restricting her, saying “wait an hour to do cartwheels,” as I want her to be able to live like a “normal” kid.
  • Her hives have tended to look like a bunch of red pimples, so now that she’s getting actual pimples, I’m always alert.  She gets annoyed at me staring at her face, or saying “That’s a new bump since dinner,” etc…..Poor girl….
  • When she develops new bumps, or shows any suspicious symptoms, I keep her near me and I watch her. We put a couch in our room because we were moving her mattress into our room so often. Now she has a place to sleep when I need to watch her like a hawk. The other day she got hives from being in a room near peanut butter popcorn. I kept her near me for 2 1/2 hours and then let her go sleep in her room. Two and a half hours was probably overkill but I would rather be safe than oh-so-very-sorry.
  • Snacks before bed don’t happen here. Even after I’ve researched everything, there is still never any guarantee. Unless we produced every single food item ourselves, we cannot 100% say that it is free of her allergens. I never want to feed her a snack and immediately send her off to bed. If we’re having ice cream or popcorn in the evening, I like to give it at least an hour before bed. Sometimes she gets to stay up a little late because of this. In this case, maybe she’s lucky? 😉
  • We check on her every single night after she’s gone to bed. Even though she doesn’t eat right before bed, we still check on her. Maybe I’m a paranoid mom, but before I can sleep peacefully at night, I need to know for sure that she doesn’t have any hives and that she’s breathing ok. Last night I woke up at around 3 am, and it hit me that my daughter is at risk of dying every single day. I know all kids have the risk of dying–you never know when there will be a car accident or another kind of freak accident. You just don’t know. And she is at risk like all of the other kids–as well as to one other tiny, deadly thing that seems to be everywhere–the peanut. I woke up around 3 am thinking about this, and I had to go check on her.
  • We own a blood pressure cuff and an oxygen monitor. I know that anaphylaxis causes the blood pressure to drop, and that eventually her oxygen would also drop. When in doubt, I check her.
  • I don’t find jokes about food allergies funny AT ALL. The new Peter Rabbit movie made me so upset. I could write a whole post about it! It contains imitative behavior & trains children to bully other kids about food allergies. It teaches kids that it’s funny to throw a deadly allergen into someone’s face and to watch them go into anaphylaxis, fall over, use an epipen without help and then apparently die. Every single day I fear peanut exposure for her. To think that any kid might purposely expose her to her allergen and possibly kill her makes me feel sick. 🙁

 

I don’t think most people have any idea what allergy parents live through, and that is why I wanted to write this post. Please note, not all allergy parents live as strictly as we do. It is up to each family to parent their child how they see fit. This is the way we live because we are afraid of a tiny little protein. And, as I say to our daughter every day: “I want to keep” her “forever.” I love my daughter and this allergy impacts our life in big ways because we really do want to keep her around.

 

Please note that I will delete negative comments on this post. Raising a child with a food allergy is stressful business. Putting this post out on the internet feels vulnerable and I am sure the food allergy bullies will find their way here. We don’t need the negative comments & neither do other allergy-suffering families who will read this. Thank you in advance for kindness, compassion & respect! 🙂 <3

 

Do you have a child with food allergies? How do you get through each day? What do you do the same or different from us? 

{ 2 comments… read them below or add one }

Stacie March 30, 2018 at 9:17 am

Yes! All of this! It can be so stressful. Every change in their life you worry will set off something too. We just got a new puppy and I researched the puppy’s food as well to make sure it was peanut free and I sit on pins and needles that he doesn’t start showing signs of dog allergies. Even through he lived with a dog doe at least half his life every new thing brings anxiety and challenges.

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brenda April 12, 2018 at 7:37 am

Stacie, thank you for your comment! YES, puppy food, dog treats–so many have peanut butter!! I’m so thankful my daughter does not have dog allergies, she LOVES our two dogs! It’s so difficult navigating these allergic kids’ lives! It’s nice to know other parents who “get it”!

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