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).
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.