Easter week is coming up, and it’s a reminder of our great blessings, but it’s also when I recall that we shrunk our world for food allergies when our kids were young. And that’s okay.
We still get a lot of questions, usually of the nice variety, asking what we eat for holidays. More than most days, holidays are heavily food-centric, and people just can’t imagine celebrating in freefrom ways: birthdays without ice cream, Easters without peanut butter or milk chocolate eggs. Not to mention dinners without rolls smothered in butter, creamy potatoes and gravy, and the like. In my childhood, these dinners were replaced with Italian soup covered in romano cheese or eggy gnocchi and pizzelle, but still.
For years, holidays weren’t fun, they were functional, when I was learning to make foods without eggs, dairy, nuts, seeds, and sometimes soy. It was work, and I missed my favorites, and I hated seeing my older daughter start to miss her favorites. But we are a family, and we built our holidays back up together. Now I can’t imagine why it seemed so daunting, or how much time has passed.
Here’s our Easter menu this year. Not only is it free from all of our many allergens, it’s also fairly well balanced for heart health and macronutrients (maybe a tad heavy on the sugar now that Lent is over, though!). And the best part is that it’s all make-ahead/stay-out-of-the-kitchen foods, so I can join in our DC tradition of spending the day together outdoors before coming home to our meal.
It's not at all like what I grew up with, and I do miss those meals and the big family gatherings sometimes. But we have so much to be thankful for and enjoy in life now, and that is definitely my focus.
Happy Easter, and have a lovely 2017 spring.
Another school break. It does seem sometimes like there’s never a full week of school. For spring break this year, we took advantage of my new energy level after heart surgery to introduce the girls to New York City. It’s a short trip that somehow involved a train, a plane, and an automobile. No joke. It also involved 14 meals that I had to pull off without a microwave or refrigerator.
First, I have to thank @nonuttraveler and @allergyeats, not to mention the many bloggers who headed to NYC themselves, or who contacted Sloane Miller for advice that I swept up. We aren’t quite at the point where we’re comfortable in random restaurants---in part because of cross-contamination risks and in part because we’ve certainly encountered people and places locally and traveling who think that food allergies equals only gluten free, or only nut free.
So traveling light doesn’t usually work for us, because we just make our own food wherever we go. It’s certainly economical. But, NYC. There’s got to be someplace we can try, right? I’d done my research of and outreach to establishments, but we had to balance the friendly places with not just locale but also other family member preferences. For example, we found a safe potato dish at a local diner but the group overall preferred a sit-down restaurant spied on our way around Midtown that morning.
We did pull off some vegan/kosher bagel sandwiches for lunch and a great morning coffee stop, though. Ess-A Bagel was a hike from our home base, but it was near enough some sightseeing moments to give it a try. We found people out the door at 11 am but stuck with our plan and joined the line. I'm so glad we did; the food was amazing, the staff was precise, and everyone's food was individually wrapped. Hard to beat NY bagel sandwiches.
Jo and I had special morning time together at Rex, a Counter Culture coffee shop in Hell's Kitchen. They made her a blueberry rooibos tea, sold (some safe) artisan chocolates, and encouraged her---one of the staff had childhood allergies, too.
We didn't make it to so many other places on our list---including suggested places like Bill's Bar and Burgers or Nizza. And we added safe places that caught our eye for next time: Grom's Italian ices, Blossom DuJour vegan foods (how did we miss this?!) in the Columbia Circle Turnstyle shops, and more.
For the bulk of the trip, I aimed for small and portable. We had quick-cooking packets of steel-cut oats, baggies of almonds (our safe protein and fiber filled nut), strips of fruit leather, and, I’ll say it, beef jerky. My one concession to packing small was a loaf of bread (for real); I got the idea from another food allergy blogger, Mamacado, who ordered all-beef burgers at a restaurant and used her own bread. I loved it; we used our slices for jelly sandwich lunches on the go (with jam packets from hotel breakfasts).
We prepared for that unsafe dinner stop, too. When we tried a place that was not allergy-convenient at all, I brought dried ramen noodles, a pouch of salmon, and an orange. We "ordered" an empty bowl and some hot water and...dinner made on the go!
The trip went so well, and you may have seen our grateful selves on Twitter. Just in case it didn't, though, we stayed across the street from a hospital in a residential area of Midtown (and all four of us know how to administer epi). ;-)
In all seriousness, travel and trusting strangers is a big step for our food allergy daughter, and she has to do it on her own one day. I’ve seen, just like most of you likely have, the reports of kids whose food allergies have held steady into adulthood and wreaked havoc in college, or at a first job. We can’t prevent accidental anythings in life, from car accidents to unknown food ingestions, but, as parents, we all try to guide our kids into good choices that serve them in their future.
If I can teach my almost 10 year old to speak up for herself
at a restaurant, to share her allergy needs with a buddy or colleague, to not be embarrassed to ask someone to wash their hands please, and to carry and use that pen without
(or with minimal) hesitation, then I can at least rest easy
that I gave her tools to wander independently.
Her verdict after the first exposure to the Big Apple? Can we go to Chicago next?!
And, for our return trip to NYC, I already have favorite and new safe foodie places picked out.
Do you relate to those weeks when you blink and it's already Friday (and not in a good way)? They seem to just keep coming this month, for my family. This week was a different kind of eye opener, though---one that had me shifting parental worry from one child to another, unexpectedly.
This wasn't a kitchen week, it was a quick-meal comfort-food week all around: ramen-y goodness and whiskey frosting!
I almost never mention my own food/other allergies or my oldest child's, in part because none of them have caused us anaphylaxis. My youngest gets to lay claim to the worst type of food allergies, and the most severe in our little world. Hers are the personal and family life-changers. So this week was an anomaly, because I spent 3 hours with my other daughter in the allergist's office for prick testing and lung function tests.
We've managed her allergies at home for more than 10 years (and how did that happen so fast?!) with saline, and some well-timed antihistamines, quite successfully, I thought. But even I was concerned when she started wheezing with exercise---not something a mom or a health professional wants to hear. I was even more concerned when, after I suggested to this kid who's highly opposed to needles in any form that she might need allergy tests and shots, she still agreed to see the allergist.
So, off we went for allergy testing and a treatment plan. Testing really just confirmed what we already knew from experience (so great when that happens and there aren't surprises), and round 2 was remarkably light on reactions. Our allergist, needless to say, is a very important person to our family, and I trust his judgment completely; we walked away with a functional plan and a set of goals that even worked around schooltimes.
But testing also revealed something that I sometimes forget: Even my oldest---my healthiest, my sweet, easy, and responsible kid---needs some extra love and attention sometimes. It's easy to get caught up in wiping down counters or bus seats, bringing safe treats to share with entire classes, and counting how many EpiPens in the house/school/sitter's are expiring soon. Watching my more delicate daughter brave not one but two rounds of skin testing, and then agree to a pretty aggressive summer injection regimen, made me so proud of her bravery and so sad that I sometimes overlook her health needs as less-than-pressing. My youngest happened upon the meaning of "bittersweet" this week during orchestra, and I think she nailed just how I felt with her sister, too.
My sweet daughter's sweet chalking skills hang in our dining room to make us smile.
I have these great blogging plans to share what I've learned from my life and my med chem world about allergy testing, injections, challenges, and more. Today, though, I'm just being mom....worried, proud, overworked, but happy.
I've written before about how much I love a good snack: something with crunch or bite to it and ideally with plenty of fiber and/or protein. Last month, I found and held onto some homemade Larabar recipes from realfoodrealdeals. They seemed simple and healthy enough to be perfect for this busy work and school week of ours.
Well, sometimes in baking, you try something new and you end up with throwaways: all of those first (or fifth) attempts that just don't work out, even with a recipe on hand.
For this no-bake snack attempt, we substituted almonds for all of the other types of nuts and tried multiple bar varieties. We used measuring cups and spoons for the apple pie version, but it just never came together for us. Even after a good refrigeration, it was too crumbly to call a bar. I couldn't actually throw away tasty food though; it's become a chunky granola topping for our yogurts instead.
Next try: on to lemon bars! We started with a clean blender and a counter full of almonds, dates, lemon juice, lemon oil, and lemon zest. And we were determined to get this one sticky enough to press and slice. We tossed into the blender an entire bag of dates, half the bag of almonds, a couple of shakes each of lemon oil and zest, and a quick pour of lemon juice. When it looked almost-right, we added a few more dates for good measure and pulsed it some more.
Bakers usually share recipes that come out tasty and beautiful, but that didn't quite happen for us this time. After about an hour in the fridge (the longest time we could make ourselves wait), we ended up with tasty, not-bad-looking bars with an awesome lemon aroma...but no real recipe to try to duplicate. Sometimes, even in baking, success doesn't come with measurements and exact recipes. Instead, it comes from the fun of piecing it all together.
If you have a good no-bake bar recipe, we'd love to try it! I'll be experimenting in my own kitchen with different flavors, quantities, and ingredients, too, until I get something more exact to share...as soon as I get out to buy a lot more dates.
Today I looked at my youngest on her way out the door and realized that she's only a few months away from tween years. Planning for her allergies today, or this week, is never far from my mind, of course. This is the time of year when I start planning months ahead, too: camp sign ups begin (who needs trained at camp? where is my extra self-carry paperwork?), and I start assessing next year's 504 needs based on how well this school year is going. All of you allergy parents out there know the drill.
One of our more recent hurdles has been approval to self-carry an Epipen set. In just 1 week, we'll be discussing self-injection with the allergist. I'm a big advocate for giving children as much age-appropriate knowledge as possible, so I pushed for this discussion. It's hard to say whether it's the right time, though, because the guidance about when kids are able to inject themselves with emergency life-saving medication is mostly outdated, informal, or polled data. Likewise, there's very little information about when, how, or why to train siblings to administer Epipens in emergencies. When our oldest took a babysitting course, she learned officially how to give an emergency injection; in reality, she was her sister's "injection buddy" on the bus rides to and from school for at least a year beforehand.
Of course, every child is different, both in their ability to understand allergies and their fear (or lack of it) about medicines. I've always considered self-care for my kids as a progression, not a single moment. Over the years, we have acclimated a 5- to 9-year-old to pushing an inhaler button with help, identifying alternate words for butter, and always carrying a bag with emergency medicine and contact numbers. She used to practice self-injection with the trainers in her carseat...but does any of that mean that she's ready to actually take the plunge, so to speak?
Well, it turns out that there are some basic expectations that could tell her doctor and me that she is or isn't ready, and they aren't just about bravery, or responsibility, or a history of anaphylaxis. Those are important, but what kids really have to show a doctor and parent is that they understand the medicine AND the different symptoms of food allergies.
The bottom line is that, before learning how to self-inject correctly, a child has to recognize possible anaphylaxis. After some digging, I found a few key descriptions that we will use to get ready for the self-injection talk:
One thing I'll be sure to explain, too: Being able to self-inject doesn't mean that you're alone in the responsibility of living with food allergies. It's just a way to be brave, not fearful or anxious, if you find yourself without a reassuring adult around in an emergency.
Today, I'm spreading the word for a fellow food-allergy family whose daughter also has leukodystrophy (an MS-type condition in children).
No doubt---food allergy diagnoses change the lives of entire families. But I can't always get worked up into true advocacy or even tiger mom mode, because I know first hand how much worse life is for so many others with poor health. Growing up with allergies bad enough to miss nearly 40 days of school and a congenital heart problem, I learned the mantra (my mom's) that "someone else has it worse" very early. Blunt, but it gives you perspective (and stops a kid from whining) pretty quickly.
Just within my own neighborhood circle, two other kids on the block have food allergies similar to my daughter's...but one, Ellie, also has a serious rare genetic disease called leukodystrophy, which has MS-like symptoms in kids. Food allergies are still a huge concern for her family, but they fall within the greater context of keeping her walking and attending school and playdates for as long as possible.
Ellie's family has pulled off some amazing advocacy for the leukodystrophy cause, and a special institute at Johns Hopkins is about to embark on clinical animal studies to find a treatment and possible cure for her and others like her.
Check out the example of her family's newsletter with research updates, below, and her advocacy website at acureforellie.org. Advocacy, for allergies or any health condition, really does make a difference---to patients who are able to connect globally now more than ever, to researchers who seek funding support, and to communities, which pull together to support faces they associate with different conditions.
We would be lost without the strong support we have from our community to keep our daughter safe from food allergy reactions. I know that Ellie's family appreciate this same community for all of their efforts to help Ellie, both by raising funds and by making sure that she experiences a lot of love and fun.
It's not always easy to say that life, in particular your child's health, isn't perfect. But don't forget to speak up, even just locally, about your family's allergies or other needs; you will gain a lot from sharing, and you never know when other families you might meet could use a hand from you.
Here's an excerpt from the family's latest newsletter to supporters of leukodystrophy research at the Kennedy Krieger Institute (KKI) in Baltimore:
"First, we want to make sure to thank you for the incredible outpouring of support we have received already this year. After our last update in February, many of you gernrously donated to Ellie's research project at the Kennedy Krieger Institute and many others signed up for the April 23 Fairlington 5K which is now right around the corner.
A lot has happened since February, so we thought it was time for a quick update...
I never thought I would be so happy to say these three words, but... "We have mice!" That's right - the mice with Ellie's genetic mutation arrived from Germany into Baltimore on March 15 and the research at KKI begins very, very soon! We recently had the opportunity to meet two of the bright, young researchers who will be working on the nano-technology effort. They are pictured below with Ellie. Their names are Ben and Christina, and they couldn't have been nicer."
In the link below, you can read more about the coming research and find links to Ellie's own web page at the KKI, which hosts a donation site for research to save children with conditions like hers all across the globe.
Hi, I'm Nicole.
ABOUT THE BLOG
An apothecary is a person or a place. Either one implies healing and relates to pharmacy in its truest sense, as a source of treatment and advice.
This blog is my way of uniting my pharmacy training with my efforts to provide a healthy and safe lifestyle for my family. In true apothecary form, I research and prescribe alternative ingredients that work just right in each specific recipe, and I would like to share the results with anyone who needs help making their own family’s kitchen allergy safe and heart healthy.
Nicole Van Hoey's books on Goodreads
Bakery Bites: Breads and Treats Without Dairy, Eggs, Nuts, Seeds, or Soy
ratings: 1 (avg rating 5.00)
Kitchen Adventures With Multiple Food Allergies: A Recipe Collection for Celebrations Without Dairy, Eggs, Peanuts, Tree Nuts, Seeds, or Soy