Live and Learn

I met my partner when I was pretty young, and we’re now at a point where our relationship could vote and buy beer in Quebec. Going back to my teenage years, I was pretty blasé about relationships. There were butterflies and disappointments, but I’ve never really experienced real heart break. (I understand this probably seems a little out of context for an allergy blog, but I promise, I’m getting there…)

As a parent, the gradual appearance of allergy after allergy with my kid, and the likelihood of more to come, is stressful, but we’re getting the hang of it for the most part. Good shit happens, less good shit happens, and you manage a little better each time, as people generally do in life and love.

Last summer, after a year of fear and relearning to cook, and reshaping how I think about food, we took our daughter in for a baked milk challenge.

For those who are not in the know, milk protein changes when you cook it.  The longer you cook it, the less it is what it once was. A lot of kids that are allergic to dairy can consume products with heavily processed or well-cooked milk protein.  It can be a back door approach to sneak dairy into an individual’s diet without their system recognizing it as the “enemy.” It can help with building tolerance as well.  The process basically involves taking your toddler (or larger, older human) to the allergist, where you buy a magical muffin that has been prepared in a way that they know exactly how much milk protein is in it.

Note: I’m going to describe what we did here, but need to make sure everyone understands that this was just our experience and I’m going from memory and the science may change or doctors may do things differently. This was a BAKED food challenge and other food challenges are done differently. It’s all medically supervised and there is little (but not no) risk of a serious reaction. Went in informed and prepared. Do your research.

Over the course of a few hours, your allergic human (of any size or age) consumes first a crumb, then another, then a small piece, then another, then a chunk, then another, then another, then the rest of the muffin. These doses are doled out over the course of a few hours, at regular intervals, and you watch carefully for signs of a reaction.  If there are none, or nothing significant, you pass.  Your kids gets a diagnosis of “baked milk tolerant” and you get a schedule of food prep to follow.

A couple months of one muffin a day with X amount of baked milk protein.  Then you up it to two muffins for a couple months, then you start giving them stuff with boiled milk (lasagna, casseroles, etc.) for a couple months, then another couple months of consuming commercial foods with milk as the fourth or so ingredient.  After more than half a year of gradually increasing exposure to dairy of varying degrees of cookedness (pretend that’s a word), you go in to try another food challenge to see if your kid can now consume plain old dairy, which involves a different testing and follow up process.

Photo 2017-10-17, 9 05 42 PM
Would you like some puree of possibility mom?

A few points about the baked milk challenge:

  1. People are supposed to be in peak physical condition for these tests. Not like, one-handed push up condition, but not sick or sniffley in any way. For a toddler, I think one-handed push ups are easier than finding a day that they’re not even a little bit sick. Kids are gross and we had to reschedule the challenge several times because of colds, eye infections, etc.
  2. My daughter hates sweet things and the muffin is super sweet so kids will eat it. I spent four hours cajoling, bribing and wrapping bits of muffin in other food products. For the last half, I resorted to pulverizing it in a container of applesauce with promises of the park and a Peppa Pig marathon.
  3. Four hours in a waiting room with a two year old is a special kind of hell.
  4. I have never been so hopeful and terrified and miserable and overjoyed to be carrying out a pain in the ass procedure. I would do it every day for a year if it meant a pass.

Simply put, if our daughter passed this test, our world would literally change. Getting rid of a dairy allergy, even one terrible muffin at a time, would expand our lives in ways I can’t even put into words.  It was like the worst and best date ever. Tedious, but full of possibility!

After four and a half hours, my daughter was declared “tolerant.” I texted my family and friends and posted pictures of her triumphantly (ok, begrudgingly) eating the muffin/applesauce mush. I called my mom with tears in my eyes. I went home and baked two batches of the muffins, and worked all the phases of the regime into my calendar. We were so relieved and so in love with the possibility that in a year, we might be able to knock her top allergen off the list.

But…by 4pm the next day, in the midst of a back yard barbecue, just two muffins into her program, she got grumpy, then clingy, then barfed all over my husband’s shoulder.  Hives popped up on her belly a while later.  We dosed her up with antihistamine and kept the auto injector at the ready, but she’d gotten it out of her system.  She was fine, but we were heart broken.

I don’t know how else to put it, though I know it’s a little hyperbolic. A door opened, we took a look around, and then it shut.  I was gutted.

But, as many teenagers figure out, heartbreak is something you get over, and sometimes things aren’t really that different on the other side of it.  Really, we just had to keep doing what we already doing.  It was the fact that nothing was going to change that was upsetting.  Disappointment is a thing, but it’s a manageable thing.

Tomorrow, we are scheduled for another challenge: baked egg.

I am cautiously optimistic. Egg was not a huge reaction for her. Her brother was allergic to eggs, but he outgrew it by her age. Half the kids I know couldn’t eat eggs for a few years.

Egg would be good to work back in. Pancakes are never the same without eggs and vegan waffles just don’t work. (Seriously Pinterest…they don’t. Stop trying to convince me they do.) Vaccinations and flu shots would be a lot less stressful without the egg thing.  As mentioned previously, working scrambled eggs into our lives would make weekday dinners way easier. I’m all for team “egg tolerant” and I’m willing to put in the work to get on it.

But, I’m also a little wiser now. I’ve done this before and I know that allergies are unpredictable. I’m going to take things a little slower this time, be hopeful but cautious, and just wait and see how it all plays out.

In the immortal words of Wilson Philips, with their mom-jeans and embroidered vests of wisdom:

Don’t you know?
Don’t you know things can change?
Things’ll go your way,
If you hold on for one more day.

We’ll see how things go tomorrow (and the next day…the next day is important too…one more day and all that…).

 

Excursion Essentials

As I’ve mentioned in a previous post, when we go out, we go with food.  Thought I’d post a quick essentials list for what we look for and what we always have on hand when it’s time to eat.

To date, we’ve never had a problem with bringing in our own food.  I know others who have, but in general, employees back away slowly and smile when we list off our daughter’s allergies.  Mostly nobody cares or notices. I think as along as nobody is screaming or making a huge mess, most establishments are pretty cool with a kid quietly snacking in a corner. We even clean up before AND after she eats…what’s not to like about a customer who does that?

The “Look Fors”:

1. Quiet corner away from main food service

2. Vinyl chair…easy wipedown.

What we always bring:

3. Wipes (before, after, during…We buy BIIIIIGGG boxes of wipes.)

4. Yumbox. This thing has been a game changer when we go out. Totally shameless plug here. It’s stupid expensive for a lunch box, but you need the right tools for the job, and this thing really works for us. The compartments are sealed when closed, it’s well-weighted so doesn’t tip, and our toddler can open and close it. Where we go, it goes.

5. Emergency kit: 2x auto injectors, anaphylaxis plan cheat sheet (short version to hand to servers etc. when out), antihistamine.

That’s it. Easy peasy. Just do that everywhere and you’re good.

Just don’t…

When I had my first kid, I had this general mantra for parenthood: “Just don’t be an asshole.”

It applies to parents, to kids, to kids’ friends, family members…

Whatever unique twist my kid decided to put on his life, whoever he wanted to be, or be with, or how he wanted to make a living, or chose to exist in his community, my basic, most general desire was “Don’t be an asshole.” I thought that was a pretty good baseline.

My ambition was, and still is, to raise tiny humans who become good, caring people. I feel like it’s a completely reasonable and totally attainable goal.  There are A LOT of ways to hit that mark.  Just. Don’t. Be. An. Asshole.

I used to feel pretty good about this. I was on a good high horse about how noble and open-minded a parent I was. It helped me be calmer and less anxious. It also helped me let go of all the bull shit and pressure that gets heaped on new parents.

It helped me wrap my head around the fact that my kid would be ok. He could scrape his knee. He could be bad at stuff. He could be weird. He could fail and flounder. He could be a lot of things. The bare minimum requirement was set.

Kid number two however, has shaken a few things up, and getting to know some other parents of kids with severe allergies has changed that baseline; added a current that runs through everything else.

Just don’t die.

Through whatever twist of fate/genetics/hormones in the water/crops grown in pesticides/breastfeeding just a little too much or too little/waiting too long to introduce foods/introducing foods in the wrong order/that reno that we did when she was an infant/watching too much Buffy while pregnant/looking at the moon while Saturn was on the cusp of something something…(they really don’t know), my daughter has these allergies.

While we’ve come into this situation at a time when the science around food allergies is gaining momentum and awareness of and options for people with food allergies are expanding, it’s all still very young. There’s a lot they don’t know and there aren’t many clear answers.

We haven’t used the auto injector yet, but with her combination of allergens, I do not doubt that we will at some point.  There is no guarantee that what’s made her throw up in the past won’t close up her airway the next time she encounters it.

On a day-to-day basis I am suspicious and scared of the playground, the shopping cart, the well-intentioned ladies at the grocery store bakery who offer my kids a free cookie, and anyone who looks after her. I have to be. We have to be. We have protocols for public surfaces of all kinds and protocols for the house. We have protocols at family gatherings and protocols for family members. It’s not an over-reaction. What most kids slam back after school while watching Paw Patrol with a side of cookies, is literal poison for mine.

Every day I send my kid to her grandparents or to daycare or I see a pizza party at the local park and without fail, “Just don’t die.” flashes through my head.

I don’t care if my kid ever tastes ice cream or brie, pizza or Reese Peanut Butter Cups, Thai food or sushi. Those things are magical, but she’ll get by on meat and potatoes.

I don’t care (too much) about her having something that will make her different from her peers. If it’s not this, it’ll be something else.  That shit is character building.

I don’t care if she has to grill cooks and servers about what they put in their food. I think we should all ask those kinds of questions, but that’s a post for another day.

I do care about her having a full life without fear or anxiety about food.

I do care about chance encounters and cross-contamination.

I do care about getting my daughter to a point of tolerance, where she can move through the world and survive it.

Just don’t die. Then, don’t be an asshole.

 

 

Soup is for suckers.

I miss eggs.

Not so much as a food, but as a concept.

I miss their convenience. I miss the nutritional bang for your buck. I miss having something that can be prepared and ready to consume in a 10-minute window of time (without having to spend an hour prepping and freezing it ahead of time).

Scrambled eggs are friggin’ delicious and fast and kids will eat them when you throw them on a plate with some toast and baby carrots.  They are SO easy.

We did not have scrambled eggs tonight.

We had soup. It was made from scratch, from wholesome ingredients. It was lovingly simmered over several hours and then frozen in reasonable portions for a quick weekday reheat.

Obviously, nobody ate it.

They ate toast and pickles and we had cereal an hour later before bed time.  Sigh.

We rolled in late from work/school/daycare pick up with low blood sugar and quick tempers. After a weekend full of ear infection fun and a blistering fever virus (that two doctors said was NOT hand foot and mouth disease, but almost definitely WAS hand foot and mouth disease), meal prep did not happen.  Consequently, the delicate juggling act of using what we have and making sure food gets ON the table that won’t be thrown OFF the table, kinda fell apart.

On the way home, with two whiney kids, I would have given almost anything to just cruise through a drive thru for deliciously terrible burgers and fries. People would have shoved food in their face and maybe felt gassy and bloated later, but for 20 minutes or so, everyone would have been happy and quiet and eaten something at the same time. If it came with a toy, I’d have another 5-10 minutes of peace to eat my own slop.

Alas, that could not happen.  My daughter is old enough now to know when she’s getting the shit end of the stick, and it’s no fun to watch everyone else get the goods while you get apple juice.  I’d still have to make her food anyway, AND do the toxic cleanup protocol to purge the kitchen of allergens after everyone else ate theirs.

So, we went home, and I heated up the stupid soup. There were tears (and semi-silent mom cursing) before the bowls even hit the place mats.

Eggs would have hit the spot, but since they’re off the table, I ran through my fast dinner options:

  • If anyone liked baked beans, I’m sure beans on toast would work, but nobody likes them, including me.
  • I know I can scramble tofu with turmeric or something, but my kids can detect tofu a mile away and that would go over even worse than soup.
  • Mac and cheese is deadly for my daughter and my son absolutely rejects all forms of non-tomato sauces anyway. My daughter, of course, won’t eat any tomato-based sauces, so spaghetti is no help.
  • Hot dogs…hot dogs work…but they didn’t make it back onto the grocery list.

As a parent, you make a lot of choices that are purely based on getting through the moment…so, toast and pickles and cereal it was. The soup was kind of gross anyway.

Next Tuesday, I’m leading with Cheerios.

bowl of cheerios
Definitely not soup.

It’s like that.

I wasn’t prepared, sitting at my desk at work, eating left-over  shepherd’s pie and scarfing cold coffee…to start crying.

I WAS going to suck up my lunch break watching trailers for movies I don’t get around to seeing until they’re on Netflix.  Instead, I fake sneezed and withdrew to the ladies to try and de-blotch my eyes.

I’d come across this video  from www.foodallergy.org.

I’m not connected with them in anyway, but for obvious reasons, when I fall into a research/panic hole about all this stuff, I often end up on a path that leads to their resources.

This video wrecked me.  This is it. This is what it’s like and will be like for my kid and my family. These kids are my kid at various stages of development, and these parents have the same fears and necessary protocols and feelings of guilt and anxiety that we do.

I used to be a pretty chill parent (relatively speaking), but it’s hard not to let the type-A terror demon loose when half of what the food guide recommends your kid to eat, could kill her.  I cried because these families get it, and we don’t really know anyone in our circle who really does. It’s not a lack of empathy or interest. It’s just a lot to take in and work into your life, and like many other conditions, it’s hard to fully grasp unless you’re in it. I know I never did.

If you want a little slice of what it’s like to be in the head space of a parent with a kid who has life-threatening allergies, this is it.  The creepy stranger that lurks in the back yard where your kid plays, the boogey man that’s hiding behind every corner…Parents and kids have different ways of describing the feeling where everything is suspect. I can usually roll with the notion that “it could be worse”, but it’s always possible that it couldn’t be, and that’s what makes it hard.

To those who’ve shared their experiences in this video and others like it, thanks! It always helps to know you’re not the only ones.

NOTE: FARE (Food Allergy Research and Education) has a whole “Food for Thought” video series that’s worth checking out.

The Game of Scones

Ok, this is more bread/muffin-related, but the pun really works better with scones. Let’s just call it a brilliant play on baked good words and move on.

There’s a game I play, as a parent of an allergic kid.  When I pull a recipe, I skip right to the ingredients list.  If I have to substitute any more than three ingredients to make it edible, it’s exiled.

If it’s really good and there are maybe four substitutions, but I KNOW they’re going to work, I’m willing to negotiate.

Let’s just say that in the past couple years, my kingdom has become very exclusive.

However, there’s a thing in my family with this cookbook. Some of you may be familiar with it. It’s called “The New Purity Cookbook: A Complete Guide to Canadian Cooking.” (Insert joke about Canadians and maple syrup/poutine/blah blah blah…)

Purity Cookbook Cover

The version we’ve always worked from is from 1945. I’m not sure where exactly it came from or what made it so influential in my family, but my Grandma had it and now I have it, and there are so many things I love about it.

It features awful gelatin-based monstrosities and pineapple glazed things that ought not be pineapple glazed. Typical stuff for the era. I have major issues with the texture of things and there are a lot of recipes that both repulse and fascinate me in there.

However, it also features kick-ass cakes, muffins, and quick breads (SCONES!) from a time before people thought butter and lard were bad. Short story…it’s always been my goto for baked goods, waffles, etc.

Unfortunately, the winds have shifted and these days, that shit generally doesn’t fly. The oldies I know and love have to be remixed like dub-hop or trip-metal, or whatever the kids are listening to these days.

Most goods CAN be adapted but often they’re pretty terrible alternatives, or a huge pain in the ass.

The average person without dietary restrictions tends to take this kind of thing for granted, but this is a good one.  It freezes well, and everyone likes it.

This my friends, is how I take an old favourite and bend it to my will.

The Original: Banana Nut Bread

Banana Nut Bread

The Non-Deadly Remix:

Three essential substitutions, the quantities are the same, and there’s nothing weird or hard to find.

  • (Optional) Whole grain or wheat flour subs in for all purpose. (Fibre! Fibre!)
  • (Optional) Maple syrup takes the place of sugar. (Ok…Canadian stereotype validated.)
  • Enjoy Life Chocolate Chips replace the nuts. (Who wants nuts in banana bread anyway…really?)
  • Skip the egg and use a flax egg. (The key is to remember to do this before everything else. Logistics! It has to sit a few minutes to hit a good goopy consistency.)
  • Soy milk knocks out the dairy. (Oat milk is good here too, but soy has a closer nutritional profile to dairy so that’s why I use it.)
  • (Optional) Extra banana. (Why? Because my baker sister said to always add more. She’s right! Makes a big difference in texture. Texture can be an issue when you mess with baking ingredients, because chemistry.)

The Result: Nutless Banana Nut Bread

  • 1 flax egg (make 5 min early)
  • 2 cups whole wheat flour
  • 1/2 cup maple syrup
  • 3 tsp baking powder
  • ½ tsp baking soda
  • ½ tsp salt
  • ¾ cup soy milk
  • 2 very ripe mashed bananas
  • As many dairy free chocolate chips as you like. I won’t judge you.  (Enjoy Life is the brand I find most often)

I dump all the dry in one bowl and mix and then add all the wet in the same bowl and mix. Then I dump that in a glass baking dish with parchment paper in it so I don’t have to work too hard to clean it.  Bake at 350ºF for about 45 minutes (depends how big the dish is). Same mix makes muffins, just bake for shorter time…more like 20 minutes.

Winter is coming…banana bread up bitches!

Food Appreciation: New York Fries

Food Appreciation is a little feature I’ll be doing from time to time about our adventures and misadventures eating out in the world with food allergies. Nothing endorsed or sponsored here. Just our experiences. 

When your kid is allergic to everything, the little things get big. Even small outings require prep.

Everywhere you go you have to anticipate all possible food scenarios and pack accordingly. We have an extensive collection of boxes, bentos, and baggies stuffed with safe options on our person at any given time. If there is any chance an excursion will overlap with meal time, it’s prepared and packed. Meal time not likely? Still packing a crap-ton of snacks.

However, toddlers can be jerks and every effort and option will be ranked, idiosyncratically, on a scale of “That’s awesome, I will happily consume all the healthy options you have so lovingly prepared.” to “Screw you guys, I’m eating exclusively pickles now.” An unfavourable judgment results in a throwdown that escalates quickly and dramatically.

In general, fit or no, it doesn’t matter. There are no other options.

There aren’t, to be honest, many treats either. Especially at the mall.

Fast food service does not generally inspire faith in food handling practices and even when there are options that are supposed to be friendly, franchises take liberties with company protocol and say “nah…just throw that fish fillet in there…”

With our particular combination of allergies, there is but one shining beacon of indulgence at the mall, and that is…New York Fries! We can eat there. All of us!

Thank you New York Fries for using actual potatoes without some weird dairy coating! Thank you for using sunflower oil instead of peanut!  Thank you for putting nothing in the fryer but those delicious dirty (skin on) fries! I will happily disregard the eye rolling from employees while I confirm this with a well-rehearsed series of questions asked in different ways to make sure everyone in this transaction has their facts straight. (Redundancy is important.)

Thank you for being the one place at the mall I can use as a carrot, to get both kids to cooperate, while I drag them through stores and pin their arms down so they don’t touch anything.

We made our purchases. We didn’t break anything. We all stayed calm. We all sat down and ate a giant bucket of hot crispy fries like a normal family. It was magic.


Crying Over Spilt Milk

Crying over spilt milk is what you do when your kid fountain vomits and busts out in hives like she’s been swaddled in poison ivy.  A few stray drops on a table from a friend’s sippy cup or someone’s coffee, and her body explodes. Sometimes it’s ok because she didn’t actually ingest it. But, sometimes you cry…because it’s fucking awful.  Dose her up, grab her bag, be thankful you’re five minutes from a great hospital.  So goes life with food allergies. Never a dull moment.

Two years ago, food allergies became a “thing” in our lives; dairy, egg, peanut, fish, and shellfish. It really could be worse.  As far as these things go, we’re pretty lucky and a lot of people deal with many more complications and many more allergies. But, it’s always there and most days there are ridiculous, or daunting, or scary, or infuriating moments that need to be dealt with.  This blog, admittedly, is part of that process for me.

Like a lot of people, I’m trying to figure this allergy shit out.  I’m far from alone in this, but sometimes you just gotta share.  Fair warning, I’m learning as I go, and learning comes with frustration.  I may get salty.  I like swears. (They’re therapeutic and sometimes nothing else will do.)

I am not, in any way a qualified professional, so please don’t take anything I say as sage advice. I’m a parent, with a toddler who has some scary food allergies.  She has an older brother, who doesn’t.  My partner and I are doing the best we can.  I’ll keep you posted.

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