The Reluctant Chef: parenting a severely allergic child (Contributed by Guest Author: Stephanie Schick)
When our daughters were born, Stephanie and I we were part of a mommy group that got together once a week. Steph’s little girl, now five, suffers with multiple, life-threatening allergies. I have often wondered, with all the stress we already have as parents, how one navigates something like this. I am lucky in that both of my kids seem to tolerate most foods (unless they are being picky or fussy – which is an entirely different battle). I asked Steph to share her experience as I believe it is important for all parents to be aware of allergy issues in kids and what it means for a family to live with and organize around them. I learned quite a bit from her piece below — I already knew what a fantastic mom Stephanie is — but I now have so much more empathy and respect for her and all the other moms (and dads) out there who are dealing with this issue. Thanks, Steph, for sharing!
Melissa kindly invited me to guest blog about my experiences raising a child with multiple life threatening food allergies so here it goes! I am the mom of a spirited and energetic five year old daughter who has severe allergies to milk, eggs, fish (assume shellfish), peanuts/ tree nuts and, strangely enough, mustard (her most severe and scary reaction to date). Like many children with food allergies, she also has eczema and asthma: the perfect storm of allergic symptoms. On top of all this she also has environmental allergies (dust, pollen etc.) and pet allergies. The journey to sorting out her allergies was long and nerve wracking punctuated with frequent bouts of vomiting, failure to gain weight, sudden hives, facial swelling and panicked trips to the ER. These experiences definitely colored our first years as parents, making the learning curve a steep and overwhelming one. Most people relish in their child’s first new foods. For us, each new food involved anxious moments, always ensuring that Epipens, Benydryl and the phone were near by in case of emergency. I realize that parenting and worry seem to go hand in hand but to have to protect your child from major food groups still seems incomprehensible. To borrow a line from Melissa, are you f*#%ing kidding me?
Allergies are definitely a challenge to manage since food is such an integral part of our social gatherings, as well as being a basic necessity. Put that together and parents of kids with food allergies need to think about the safety of their kids pretty much all the time. It is hard to be relaxed in a social setting and birthday parties for the first few years were definitely not easy. Parents of kids with allergies may be viewed as “helicopter parents” but I am certain that if you spent one day in our shoes, or accompanied us to the ER during a reaction, you would understand why. Food is everywhere…. playgrounds, play dates, parties, waiting rooms, schools, parks, drop in play gyms etc. It is hard to accept that for my daughter, the thin line between life and death can involve a gold fish cracker or some smeared mustard and the timely use of an Epipen. Her safety requires my constant scanning of her environment and the incessant reminder that she is NEVER to accept food from anyone but her mom or dad. I wonder how I will raise her to be confident and secure when there is so much she has to be wary of. How will she adjust to taking on this responsibility as she grows older? How will she feel about her younger sister who can eat everything she can’t? Most worrying is the thought that I may forget to bring the Epipen at the crucial moment when it is needed. Needless to say, some days I spend a little too much time in “what if” thinking. It may be my way of making sure I am prepared and proactive but it can certainly be mentally exhausting. As much as my husband and I try our best to shoulder this worry and keep it away from our daughter, there are times when our emotions and frustrations get the better of us.
There is no eating out or ordering in for our family, it is just too risky with her multiple allergies. This means that every meal that goes into my daughter has to be home made. I find that it is hard to be creative when the allowed ingredients are so few (my husband has Celiac disease so we are even further restricted). You would be surprised how mustard is hiding in most processed foods (broths, deli meats, and even ketchup!) under the vague term “spices”. Spontaneity is definitely tempered by the need to plan every snack or meal and travel involves luggage filled with food and, of course, a kitchen at our destination (no all inclusive holidays for this family!). I do appreciate that there are far worse medical conditions a child could have but the constant worry (especially when she is at school), meal planning and the social implications stemming from her allergies do take its toll on my husband and I . It is hard to trust others with her care and the transition to kindergarten in September will be a huge leap of faith (plus lots of preparation on my part to educate everyone at the school involved in her care).
Epi-pens are amongst the things Steph needs to remember on a daily basis. Forgetting them could mean life-threatening consequences for her daughter.
I have spent years wondering why she has so many allergies. Was it something I inadvertently did or did not do? I thought I was doing all the right things while pregnant with my first daughter. I took no medication, I was cautious and careful about what I put into and onto my body and I ate organic food. She was born without medications or any interventions, she was exclusively breast fed and raised in a home with a dog where no heavy chemicals or antibacterial products were used. Some researchers believe that the overuse of cleaning and antibacterial products have contributed to the rise in allergies (hygiene hypothesis). People also point to vaccines as a likely source of increased allergies (but I happen to know a child who is severely allergic to dairy and nuts who was never vaccinated). The answers seem elusive because there are just too many variables to consider and the relationship between all of them is so complex. Even immunologists and allergists seem stumped and recommendations keep changing regarding ways to help reduce the chances of food allergies developing in children. It used to be that we were told to delay food introduction but now the recommendation is to feed all foods at 6 month of age to prevent allergies. I have to wonder what the recommendations will be in 2 more years from now. The jury is still out on whether eating allergenic foods while pregnant and nursing is protective or not. Strangely, her younger sister has no allergies even though my pregnancies (and my diet during both pregnancy and lactation) were fairly similar. In our case, it was likely a case of two very different genetic cards being dealt…something I had no control over. I try and hold out hope that she will outgrow these allergies but so far her allergist has given little reason to be optimistic and this is a reality I need to prepare her for.
The most amazing thing about kids with food allergies is that they tend to be extremely resilient (more so than their parents!) and they adapt to their realities with amazing grace. My daughter has tolerated endless medical appointments, food elimination trials and trips to see alternative medicine practitioners in our constant quest to see if something will bring her relief. She rarely complains and will happily attend a party with my pre-packaged food and her home made cupcake. I am the one grieving the loss of the childhood that I hoped she would have. One where she would grow up surrounded by a multitude of animals, where she could go with ease to play dates, birthday parties, school trips, sleepovers, over night camps and vacations. As far as she is concerned, she lives a rich life of fun with friends and family and she accepts the fact that she can’t eat everything that other kids do. This may change as she gets older but for now, her joy is in life’s experiences, not what is on her plate. Despite all her challenges, she is evolving into an assertive, confident and adaptable little person and this makes me so proud to be her mom. She teaches me every day to face my fears and to live in the moment and for this, I am grateful.
Next week, Stephanie will tell us about how she manages to weed through all of the advice and research out there on how to manage allergies.
Thanks for sharing…I’m definitely going to be asking on invites to let me know if parents have concerns from now on. Having dated a guy with severe dairy allergies and seeing what happened when an inadvertant ingredient caused all night vomiting and scary asthma, I couldn’t imagine this with a child. My god.
On a sort of related and somewhat hijacking-note, this is why I question the “hard evidence” around breastfeeding and immunity. IMO, we are born with immunity, it is genetically-derived and bf’ing cannot and will not ever increase that genetic component. It can certainly make a bad thing not worsen, but I really don’t get the pressure around “immunity” as a point for bf’ing or prevention of asthma when I hear stories such as yours. I just don’t get it.
Yes, the issue of breastfeeding and allergies is a puzzle…you think you are doing the best for your child but you can be exposing them to food that they are allergic to (the proteins can be passed down through the milk). So, unless a breastfeeding mom goes off all potentially allergic foods (which I tried and then lost a lot of my supply b/c I was starving all the time!), is breastfeeding the best when a child is exhibiting allergic symptoms? Also, if the research is showing that the delay of introduction of solids is contributing to allergies, how do you make sense of this research with kids who are breastfed? They would theoretically be getting exposure from breast milk from the very beginning! It’s crazy making for sure!
Thank you for this post! I was having one of those moments…worried, feeling crazy and alone.
Nina,
You are definitely not alone…sadly, more and more parents will be joining our ranks as parents of a child with allergies…if you live in or around Vancouver, check out the Metro Vancouver Anaphylaxis Group on Facebook. It is a great place to get support from other parents who understand what it is like to raise a child with allergies. It is also a great place to share info about products, recipes and to trouble shoot issues regarding school (and many other topics!). Take care, Stephanie
I don’t have much to add, except I’m a parent of a nut- and soy- allergic child and I hear ya!! He’s 10 YO, and we don’t even know about shellfish yet (he’s eaten 2 kinds of fish but no shellfish). We’ve never done an all-inclusive and tend to get hotels with full kitchens so we can avoid eating out. Just this past weekend, we walked into a hamburger joint in the US while on a driving trip over the border, and it was full of peanuts! Who would have thought – the fries are done in 100% peanut oil, and they leave a big bucket of shelled peanuts right at the order counter for people to snack on. We quickly left.
I was an allergic child growing up, but I outgrew my most severe allergy (nuts) by the time I was 20. I have a few friends with kids with way worse allergies than my son though, so I totally sympathize with you! One of my friends sends her kid to private school, since he can’t possibly be kept safe in a public school (a private school will tolerate the caregiver coming in every day after lunch and cleaning the classroom tables!).
One thing I do ask is – you say you always fear forgetting your epipen? How many do you have? We have multiple epipens stashed all over the place – kitchen drawer, my purse, my son’s knapsack, his grandmother’s purse (she babysits a lot) and the car glove compartment (since husband doesn’t carry a purse!). Our EHB provider won’t pay for multiple epis at one time, so our pharmacy fills two, then submits the claim, then two weeks later, she’ll submit another 2, then claim, etc. That way, we can always have 4 or 5 on the go.
Also, I know a few young kids at my son’s school who wear their epipens in fanny packs or on their belts, around their waist. If your daughter is just 5 YO now and hasn’t yet started kindergarten, you may want to get her used to this idea before she starts school. Also, if you are considering a public school, you may want ot interview the school’s principal, to find out what their policies are (it’s not mandated district-wide, and I went to three public schools and got three different responses on “how they handle” epipens).
Thanks for your comment. I do have 4 Epipens (two at school and two in my bag) and several expired ones stashed in various places (and at $100 a piece with a one year expiration, I am thankful we have coverage!). Even so, when I move them from bag to bag (depending on our activities), there have been times I have forgotten. I don’t store one in the car because of the temperature fluctuations as they should not be stored under 0 or over 30 degrees. For kindergarten, they will have 2 epipens in the office and I will also teach her to carry a pen so she will always have one on her as well.
Jeez so hard. My son has a grass pollen allergy that leads his eyes to swell up like balloons (by no means life-threatening!). This totally freaked us out when it first happened. He was literally swelling before us. He was adopted, and I immediately blamed myself for not breastfeeding (WTF?!) All I can say is whatever you do, don’t blame yourself! Your daughter sounds like a major trooper.
It is amazing how ingrained guilt and mothering can be! Thanks for the kind words!
Such a great guest post… Thank you for sharing! I am a Kindergarten / Grade One teacher, and back in my second year I had a little girl in my class with a severe peanut allergy (where contact alone could cause a fatal reaction). I met with the parents a couple of times before the year started, set up a plan of action, and allowed the mom to visit each day before / after / during snack time for the first week to ensure that her daughter, the other students, and myself were all aware of what needed to happen in order to keep the little girl safe. It was, of course, a completely nut-free classroom and I sent a letter home with all of the students explaining the situation, as well as posted bold, fluorescent signs on both classroom doors. For me, having an epipen around at all times was crucial, so I had one in my desk, the main office had one, and I suggested that the little girl where a small fanny pack with an epipen in it as well. Thankfully, the parents loved the idea and she came to school with the fanny pack on and left with on each and every day to ensure there was always one with her, whether she was on the playground, visiting a buddy class, in the gym, or out on a field trip. I know I felt much better knowing it was always with her, as did her parents. Good luck with the transition!
I think we will have her wear a belt with her epi pen inside but I do know the school will have one in the office accessible at all times. Because of her multiple allergies, she will be surrounded by allergens at meal times. She is amazing and knows not to touch anyone else’s food and asks her friends if they have washed their hands after eating. She attended preschool successfully for 2 years and this has helped prepare her for the transition to kindergarten. Thanks for sharing your experience as a teacher!
Isn’t it amazing jkossowan, that you have to/can create your plan for dealing with allergies, while other teachers get no guidance from the administration? I’m assuming you are teaching in a public school. I get so frustrated when I hear the differing policies at each school. When I interviewed three different public schools, one principal told me “no way!” could my son keep an epipen in his knapsack, nor would his teacher be permitted to keep one in her classroom (and I thought, would THAT teacher want to be faced with an analphylactic reaction and have the epipen 4 minutes away in the office?!?!?!); another school told me “We don’t care what you put in your son’s knapsack, and of course the teacher can keep one in her desk and wear one in her fanny pack whenever they leave the classroom”‘; and the third told me, “Whatever you want, we don’t really care which plan you choose” (which I interpreted as, “we don’t take your son’s allergy seriously”). You can guess which school I sent my son to!! We need a Sabrina’s Law here in BC and it’s taking way too long to get it implemented – both to protect teachers and to protect students.
Stephanie, in case you haven’t confirmed it yet, you really should check and make sure the school will permit her to wear it on her belt and don’t just assume they will allow her to do that. Also check the principal who tells you the answer is also going to be at the school next year. I was told by one school principal that my son wearing his epi “would be too dangerous” to other kids, because they could take it and play with it and stick themselves (give me a break…..). The principal likened it to him carrying a loaded weapon to class! That being said, our school allows kindergarten (and older) kids to wear their epis and never has there been a problem with other kids playing with it.
Also, just FYI, my son’s K-7 public school has about 325 kids, and he just finished Grade 4. In his five years there, there has never been one classroom without at least one child who carries an epipen for allergies. Nuts are not banned at his school but they are banned in his classroom. The same is true for other foods in other classrooms – it’s not a “school-wide policy”; it’s based on the kids in each class and can vary from year to year. Now that he’s 10 YO, I don’t worry as much about him, except now, I’m starting to face the “I don’t want to bring my epipen; it’s not cool!” attitude that I’ve been expecting with the teen years .
Angela…can you please expand on what a “Sabrina’s Law” is? Have there been conversations with the VSB about a district wide policy?
I haven’t googled it to be entirely accurate, but it’s named after a teenager (“Sabrina”) who died from a reaction after eating cross-contaminated french fries, I think, in her high school cafeteria. I think it was an analphylatic peanut allergy. She wasn’t carrying her epipen. I don’t think the school had any prior knowledge of her allergy. Basically, the law mandates at the provincial level what policies school districts have to be in place for schools to deal with life-threatening allergic reactions. It dictates who needs to know, what medications can be carried, where they can be stored, and I *think* it mandates traning for teachers in the use of epipens. Also, it absolves teachers of liability if they chose to use an epipen and it wasn’t warranted (so important, because to me, anyone who is ‘reasonable’ can make an assessmnet if the child is having a life-threatening reaction, or just suffering a nasty outbreak of hives…or whatever). It basically means – to me – that parents don’t have to go around public school to public school to determine “how” the school will deal with the kid’s allergy. It tells teachers and principals what is allowed, and what isn’t, and it obligates them to follow it, and school districts to implement it. I know a couple of years ago, an NDP MLA on Van Island (Saanich or Sooke, I think?) was trying to get a bill to address this through the provincial government but it got shelved.
As far as I know, there is still nothing in BC, at the provincial level, that mandates how schools are to address life-threatening allergies. Teachers don’t get training (unless they request it) which may make them reluctant to take responsibility for carrying or using an epipen for fear of liability or using it “the wrong way”; school administrators (e.g., principals) get to decide how epipens are handled; and nobody is absolved of liability if acting in their most reasonable manner, when faced with a reaction in a child. So until we get it resolved at the provincial level, parents are left to interview each school and hope to goodness the principal doesn’t change (and hence, the policies) while their kids are at that school.
Hi Angela, thanks for your post…Just to clarify a few points, here is the link to find out more about Sabrina and the law that was made in her name:
http://allergicliving.com/index.php/2010/07/02/sabrinas-law-the-girl-and-the-allergy-law/
Her reaction was a reaction to dairy (cross contamination from cheese curds on the tongs that were used to serve her fries). This illuminates how dairy allergies can be just as deadly as peanut allergies. Her allergies were known to the school and she had an Epipen in her backpack in her locked locker. Her reaction was delayed so by the time she was showing symptoms, she thought she was having an asthma attack and went to the school office (where no Epipen was kept for her). By the time the ambulance was called and someone tried to get her Epipen, she was in cardiac arrest and later died.
The law seeks to make the policy around managing anaphylaxis, reducing exposure to allergens and training staff on how to use epipens very clear and uniform across the province ( of Ontario). So scary when these things happen. Can’t help but feel overwhelmed thinking about her family and the loss they experienced…such a tragic story but Sabrina has such a brave and strong mother who made sure that her daughter’s death would enact positive change in the school system.
We need that in BC….
Thank you, Steph, for taking the time to educate everyone on life with children with allergies. I have found a strength within myself that I did not know existed, from having to fight for people to take my daughter’s allergies seriously, as you already know
The more we share, the more everyone learns. The more relaxed we can become (dare I ever say that, lol) Win-win 
I look forward to reading more of your articles in the future 
I just wanted to add to this story. When I began weaning my little girl, I was concerned and then alarmed as she broke out in a growing rash, over her torso and back, had bouts of unusual crankiness, and welt like skin reactions. Having visited the health nurse and GP (who fobbed me off), I was at a loss until Steph shared her knowledge. Finally tested, results were in level 3 allergies to dairy. But the brilliant bit was Steph took the time to give me loads of advice and put my mind at ease. I had a great shopping list and weblinks of alternatives
Great post
As a kid I had severe allergies (I’m 26 now). I was severely allergic to eggs, fish, shellfish, chicken, and nuts, as well as environmental allergies to grass, ragweed, birch pollen and cats. However my mom was also told to keep me away from a number of other foods…fruit with pits, potatoes…the list goes on!
There was even a point when I was 4 that all my mom could feed me was green beans because that’s the only food with 100% certainty she knew I could eat!
I remember being little going to birthdays with my little rubbermaid container containing my egg-less/peanut-less cupcake. My mom was a masterchef with her box of egg-replacement!
I remember feeling awkward and like a freak because everyone else could eat birthday cake except for me… I’d be embarassed sitting there eating my special cupcake. But I also remember my friends asking their mom’s if they could make them cupcakes to bring to birthdays too because they thought I was so lucky!! (kids eh?)
Severe allergies in kids were far more rare when I was a kid, there were no “peanut free” labels, or “may contain…” in the ingredients list. I’m sure my poor mom was almost had a heart attack everytime I put anything in my mouth in fear of an allergic reaction.
I was super lucky to grow out of some of my allergies like chicken, and egg (I can eat birthday cake now!) but I’m still very allergic to fish (and all the environmental allergies, but they’ve even gotten better over the years).
I’m not going to lie, it was hard growing up with so many allergies, but I think it would have been a thousand times harder if I didn’t have such a supportive mom!
I also know that because I ate home-cooked meals all the time I’m way healthier because of it! With all my allergies my mom couldn’t buy pre-packaged, processed foods.
I think the most important thing is not to blame yourself for your child’s allergies. I’d feel terrible if my mom blamed herself for my allergies. It’s not her fault, I don’t blame her for my allergies at all.
I had an awesome childhood, I never felt like I was a shut in because of my allergies. Of course I felt like a freak at times, but who doesn’t?
Kate,
Thanks so much for your post…it is so amazing to hear the perspective of an adult who knows what it is like to grow up with so many allergies. It sounds like you had an amazing mom and that you have a very good attitude about your childhood. This brings me a lot of hope for my daughter (especially the part about the seasonal allergies improving with age since this bothers her more than the food allergies!). Thanks for the reminder to let go of the guilt…it is not healthy to hold on to that. I delve more into this topic next week when I explore the connection between the latest research on allergies and parental guilt…stay tuned….
I am wondering if you have heard of the non fiction book called “Don’t kill the birthday girl” by Sandra Beasley. The author writes about her experience growing up with multiple, severe allergies (which she has not outgrown and he is in her 30′s). Like you, she had allergies at a time when not as many kids had them….I’m sure it is a story you could relate to.
I also just wanted to say, I loved your comment about feeling like a “freak” at times but that we all do at some point in our lives….so true!
Thanks again for sharing!
[...] transition can feel extremely daunting. As some of you may already know from my previous guest post, my 5-year-old daughter is allergic to dairy, eggs, peanuts, tree nuts, fish (presume shellfish) [...]
[...] with two daughters (5 and 3). Her duties include being a medic and short order cook (aka the “Reluctant Chef“) for her allergic family members, acting as a mediator between her spirited daughters and, [...]