26 Weeks of Muffins, Weeks 2 & 3

We’re currently on week 3 of our “26 weeks of muffins” challenge to try and help little E outgrow her dairy allergy more quickly.  I’m not so sure we’re going in the right direction, but we’ll get to that in a moment.  First, I have to gush over the Old-Fashioned Donut Muffins I made the week before last.  They legit tasted like donuts, complete with a sugary glaze that makes me drool just thinking about it.

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That was week two.  E had her share of the glazed donut muffins for the week (and I had mine) and she had no reactions.

In the meantime, we stayed pretty busy.  We took E to an exotic petting zoo, where she turned her nose up at the kangaroos and the sloth and the monkeys, but she lost her SHIZ over the sheep.  There were four in particular she was obsessed with and they wanted nothing to do with her.  She didn’t care.  DAMN IT, they were going to be her friends whether they wanted it or not.

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Also, I was pretty excited when E recently started stringing two words together.  Like, “that bird” and “daddy car.”  But now she’s decided “no mommy” is pretty much her favorite phrase.  And I had thought just “no” was bad.

At least she’s become the perfect little helper.  She helps with chores and she feeds the dog and she puts things away for me when I ask her to.  I’m writing this down as proof because when she’s 14 and sassing me because I’ve asked her to clean her room, she’ll never believe there was a day when she LIKED to clean.

So back to the (SIGHHHHH) muffins.

I realized that by straying from the original baked-milk-challenge-recipe the doctor had given me, I’d miscalculated the amount of milk going into the batches of muffins I was baking.  There should be 1/6 cup of milk in each muffin, which equals 1/12 cup in each serving I give to E.  So far the muffins she’s been getting have only had 1/12 cup per muffin, or a mere 1/24 cup per half-muffin.  This past Sunday, I reverted back to the original recipe while I research recipes with the correct amount of milk.  That means that starting this week, E has been getting twice the amount of milk she was getting before.

I’m hoping it’s a coincidence.  I’m desperately, begging-the-universe and pleading-with-the-allergy-gods, hoping it’s a coincidence.  Since starting the “correct” muffins two days ago, E’s bowel movements have changed.  They’re worse and they’re a different color.  (“TMI” goes out the window when you have a toddler, right?)  Now she has a terrible, painful diaper rash that looks allergic in nature.  She had a full-face rash tonight and she had hives and red patches on her arms and her ear, of all places.

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I’ve noted it down as a potential reaction.  If it continues or gets worse, I’ll have to call the allergist to see what he thinks.

Poop.

 

26 Weeks of Muffins: Week 1

It’s been just over a week since E’s failed baked milk challenge at the allergist’s office. For the next six months, we’ve been instructed to give E half a muffin three times a week in order to help her build up a tolerance for baked milk.  The muffins need to be fresh, so I’ll be baking a new batch every week.  Did you do the math?  That’s 26 batches of muffins before E’s next blood testing.

B is thrilled because he usually buys a package of fresh-baked muffins at the grocery store each week to eat for breakfast.  He’s really, really into muffins.  Out of every dozen muffins I make, E only gets one and a half–so B gets the rest because this mama is trying to ditch her sweet tooth.

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I’m also keeping a log of each muffin I give to E so I can discuss reactions/non-reactions with the allergist.

  • 7/23/2017:  Dime-sized rash on one cheek
  • 7/25/2017:  Quarter-sized light pink rashes on each cheek several hours after consuming
  • 7/28/2017:  No reaction
  • 7/30/2017:  [Jeopardy music]

Of course, I have to share all of the recipes I’m trying.  Most of them will require modifications for E’s other allergies, so I’ll link to the recipe and note what I did differently to accommodate little miss.

This week:  Amish Cinnamon Muffins

THESE ARE SO GOOD.  The muffin tops are incredible–super fluffy and just slightly crispy on the edges.  Oh em eff gee.

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Modifications:  subbed egg with flax egg, and subbed butter with Smart Balance (Original).  I still struggle with flax eggs in certain recipes–especially meatloaf/meatballs/etc.–but for muffins I’ve been successful so far by using a little less water than most flax egg recipes call for.  Typically the flax meal to water ratio is 1 TBSP:3 TBSP, but I’ve found doing about 2.5 TBSP of water is perfect.

Also, this recipe called for buttermilk, regular milk with vinegar, or just regular milk.  I used plain whole milk.

I’m drooling as I write this post.

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If you have a favorite muffin recipe, please feel free to share!  I might as well take this opportunity to try some new things and add as much variety as I can to E’s bland-ish diet.

Baked Milk Challenge

Last week we had E retested for her dairy, egg, and peanut allergies.  It’s been six months since her last blood test when her allergist was hopeful she was starting to outgrow her dairy allergy.

I already knew the peanut allergy was still going strong.  A month ago E had a reaction from cross contamination.  I gave her a piece of toast with cashew butter that was fresh ground in a machine right next to a peanut grinder.  Never again.  This pic was taken about six hours after exposure:

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I also expected we were still dealing with an egg allergy since we’ve had some suspected cross contamination reactions there as well.  I was correct in both of my suspicions–egg and peanut are both too high to do anything but retest again in six months and see if the IgE numbers have decreased any.

E’s milk numbers dipped low enough, though, that her allergist allowed us to try a baked milk challenge in the office.  They gave me a recipe for muffins (we still had to use an egg substitute) and we set up an appointment to monitor E after she ate them to see if she had any reactions.

Our appointment was at 8:45, almost an hour later than E’s normal breakfast time.  She would have to eat two muffins for the challenge, so I had to starve the poor child until we got to the allergist’s office.  By the time the challenge began, she was so excited to be presented with the 1/4 of a muffin she was allowed to start out with.  When she finished, we waited 20 minutes and monitored for a reaction.  There wasn’t one.

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Next she got half of a muffin and we watched her for 20 more minutes.  There was still no reaction.  I texted updates to B about every 15 minutes.  The last leg of the challenge was for E to eat a whole muffin, and we would monitor her for 45 minutes.  After the whole muffin, I texted B and we were both so thrilled that E wasn’t reacting.

No sooner had I texted him that last update than I noticed it:  all of my excitement and hope and optimism melting away as a rash appeared on her left cheek.

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I stepped into the hallway and summoned the allergist, who came in and examined E’s face.  He noted the rash and asked me to step out and let him know if it spread or got worse.

Over the next 20 minutes, the rash began to fade, but then more began to appear on other parts of her face–the other cheek, below her eye, in between the eyebrows.  I knew what this all meant but I refused to believe it until the allergist said the words himself: that E hadn’t passed the challenge.

What this means:  despite E’s super low IgE numbers for dairy, she can’t completely tolerate baked milk.  What this doesn’t mean:  that there’s no hope and we’re not making progress.  Though E reacted, it was mild enough that her allergist wants to continue exposing her to very small amounts of baked milk regularly in the hopes of building up a tolerance.  For the next six months, we’ll give E half a muffin, three times per week.  When we retest at her second birthday, the hope is that her numbers will have come down significantly and we can redo the challenge and pass with flying colors.

What THIS means:  I’ll be baking.  A lot.  Every single week.  The muffins need to be fresh, so there’s no batch baking and freezing here.

What THAT means:  I picked a good time to get back into running.  Mmmmmmmm muffinsssssss.

I had a nice little cry after we left the allergist’s office.  It’s a step in the right direction and for that I’m grateful.  But it’s tough, knowing that on your child’s second birthday she will still be unable to tolerate so many foods in a world that is awfully insensitive to dietary needs.  It’s a hard thing to accept.  But we will keep fighting and I will continue to hope.

Surgery, BAAAs, Moos, and Meatloaf Soup

It’s been that kind of month when your everyday routine becomes so out of wack that you’re pretty sure you’ve entered a parallel universe.  First E was sick, then I was sick, then E was sick again, then E was teething.  Two days ago, B had shoulder surgery and things have been anything but calm.  Taking care of a 35-year-old man in an immobilizer and doped up on pain killers is just as much work as taking care of a 16-month-old.  He joked last night that we should set up a baby monitor next to the recliner so he can cry for me in the middle of the night. I almost kicked him.

At least E is her happy self again.  She’s working on learning her animal noises.

Sheep:  Ba.
Cow:  Mmmmmmm.
Doggy:  Ruh ruh ruh.
Horse:  Neeeeee.
Monkey:  Ooo ooo ooo.
Bear:  Guh.
Kitty:  Mau.

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That last one might take her the longest to learn.

Now that everyone is eating properly and I have a few days off of work, I tried to make a meatloaf last night.  It was a new experience yesterday because the meatloaf I’ve made in the past contains eggs.  I followed this recipe from Betty Crocker but I subbed rice milk and ground flax eggs.  Since E was diagnosed with her allergies almost a year ago, I still haven’t been brave enough to try an egg substitute.  I’ve swapped applesauce for egg in a banana bread recipe but that’s as ballsy as I’ve gotten.

Um…I need some practice with flax eggs. When I mixed the ground flax seed and the water, I didn’t think it had nearly the egg-like consistency it was supposed to.  But this is my first rodeo, so who was I to question it?

Well yeah, the “meatloaf” turned out to be more of a soup.  The taste was okay but the texture left something to be desired.  Will NOT be doing that again.  I’m open to tips and tricks from any “experts” out there reading this.  😉

We’re heading into the weekend and we’re normally a pretty busy family on the weekends.  With B recovering from surgery, we’ll probably be stuck at home a bit more than usual.  I’ve got lots of activities planned with E, so you’ll be seeing some updates on how they went.  Can’t wait to try some new things!

Worst One Yet

E just got over an awful stomach flu that lasted for five days and landed us in urgent care.  Twice.

Good thing yesterday was National Donut Day because this mama is a stress eater and a boat-sized donut is just what I needed.

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So finally E has been feeling much better and acting like herself for the past three days. Her appetite is still a bit wonky–she eats like a horse but it’s all carbs, she has no interest in meat or veggies. But we’re past all the diarrhea and the vomit and the dehydration.

Then after we got home from day care yesterday she threw up while playing with a puzzle in her bedroom.  I immediately went into panic mode.  Did she get another bug? Was it the same bug rearing its ugly head yet again?  Was it something worse?  She was acting fine, so B said we shouldn’t worry.  Okay fine, I pretended not to worry.

Not too long after, I changed her diaper.  When I pulled down her pants I noticed her legs were dotted with big, angry hives.  I lifted her shirt and they were on her chest and her abdomen, too.  The pieces started to come together.  Hives.  Vomit.  She was having a reaction to something she’d ingested.

But what?  She hadn’t eaten anything new.  Allergy moms know full well though that a child can develop a food allergy at any time.  I called out to B that I needed a syringe of Benadryl stat, all the while thinking of the allergy action plan on our fridge that states full-body hives and vomiting together warrant the use of the EpiPen. Technically, according to our action plan, this was a probable anaphylactic reaction.  But she was breathing okay.  But she was also crying for no apparent reason that could also just be an indication that she was tired.  So many what-ifs.  WHAT THE HELL SHOULD I DO?!?!

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Seriously guys, if I’m going to be an allergy mom I’m going to need a truckload of Xanax.

I gave the Benadryl and watched her, all the while trying to figure out what caused the reaction.  While I was giving her a bath, it clicked.  When we left day care, the teacher handed E a pacifier.  It was the same brand we use, but from across the room it didn’t quite look familiar to me.  I got distracted and scooped E up and took her out to the car, and only later did I determine that pacifier was in fact not ours.  No big deal, right?  We were already home, it was the weekend, and the babies swap pacifiers at day care all the time.  It’s kind of hard to prevent it.  We’d just take it back on Monday. I didn’t think anything of it.

Until that vomit episode and that rash and no solid explanation for it.  I immediately jumped on to Facebook and posed the question in the allergy mom support group I’m in. Was it possible?  Could some other kid have had that pacifier in his/her mouth after eating peanut butter, and now it was causing E to react?

I’ll never know for certain but the support group seemed to think so.  All of the advice I got was to “epi,” the pseudo-verb used to describe using the EpiPen, and take E to the ER. By this time the Benadryl had kicked in and E was asleep, and I was having an anxiety attack wondering if I shouldn’t have second-guessed the Epi.

Luckily E was okay.  I watched the video monitor like a hawk until I went to bed, and I checked it the numerous times I woke during the night.  E still has pink spots where the hives had been, but the vomiting has subsided and she’s acting A-OK.

As if food allergy moms don’t have enough to worry about, now I have to worry about her grabbing the other babies’ pacifiers at day care.  The teachers can keep an eye out but this one is really hard to avoid and even I can understand that.  I suppose all I can do is ask for extra precautions to be taken, and thank my lucky stars we have the EpiPen just in case.

Adventure

Last week, my mom and I braved a road trip with a 15-month-old to see all of my family in another state.  One that would involve over 20 hours of driving in just five days.

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For weeks leading up to the trip, I fretted over the whole ordeal.  E gets bored in the car driving to the grocery store, so how on earth was I going to keep her occupied for 1500 miles?

I’ll leave you in suspense here a moment.  What I will tell you is that the driving was not the most difficult part of the journey.

The hardest part was the food.  Before we left, I mentioned to my mom I wanted to come up with a game plan for feeding E while we were there.  Feeding a toddler who can’t eat dairy, eggs, and peanuts is no easy feat, and it’s definitely not something you can accomplish without planning.  At home, we eat what E can eat.  I wasn’t going to expect my aunts, uncles, cousins, and grandparents to do the same; but at the same time, I didn’t want E to watch everyone eating the same thing while staring at something else on her own plate for five days straight.  There had to be a middle ground, a compromise of sorts, and that’s what I’d wanted to plan.  My mom reassured me they would all understand, and we didn’t need to plan.  It would all work out.

From the moment we arrived, everyone wanted to eat at restaurants where E could literally eat nothing.  Our first night there we went to a pizza buffet where even the one E-friendly thing there (peas at the salad bar) was contaminated with hard-boiled egg particles.  I had some snacks in the diaper bag but nothing that would constitute a meal since we had just pulled into town an hour earlier.  E immediately pulled my plate of pizza in front of her and she was devastated when I took it away.  One hour into the trip and my heart was already ripping to pieces.

I ended up making a trip to the grocery store to buy some “real” food for E.  It took away some of the stress at the times my family chose to eat at places whose menus didn’t jive with E’s allergies.  However, it was difficult not to be in my own kitchen where at any given moment I know I can throw together an entire meal for E in a pinch with all of the things I have on hand.

One night we traveled to another town to stay with a cousin from the other side of my family.  She’d invited about 20 or 30 people from our family over for a barbecue, and to my relief she asked me for a list of things E would be able to eat.  Although there was plenty of food there that was safe, there was also a lot of unsafe food.  When we arrived, I asked all of my family to not give anything to E without asking me first, and everyone seemed agreeable to my request.  Unfortunately, they didn’t realize that also meant they had to watch their kids and grandkids, who put Cheetos right into E’s mouth.  I quickly took the chip away and the girl who’d given it to her (four or five, maybe?) got extremely upset.  “But she likes it!  Why you won’t let her have it?”  I explained to her that it would make E very, very sick, but she didn’t understand and continued to try giving them to E.  From behind me, my aunt cried out, “Well, she’s just a kid, she doesn’t understand allergies!”  I bit my tongue but I desperately wanted to remind her that a child of that age knows what “sick” means and it would be nice if she would jump in and help her own granddaughter to understand she couldn’t feed that kind of food to my kid.

This is why I need help.  This is why I need other adults, especially my own family, to listen and to understand the seriousness of food allergies and how DAMN HARD it is to be the mother of someone who has them.

Our last night before heading home, my grandpa really wanted to take us out to a new fancy steakhouse that had just opened.  It was expensive, one of those “special occasion” type restaurants, and since my grandma passed away two years ago, special occasions are rare for him these days.  By then I was plain exhausted from all of the fighting and compromising I’d done just to feed E during our trip.  But it was important to my grandpa and it was one more night.  I could do it.  I spoke with the waiters, who spoke with the cooks, and they were able to grill E a chicken breast with absolutely no butter or marinade.  Paired with a side of apple slices, E had a delicious meal that was served to her in a cute little cardboard car, and I was ridiculously relieved.

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In all fairness, other than the food the trip was phenomenal.  E was in the most spectacular mood and she charmed the socks off of everyone.  She got to meet cows and horses and tiny little puppies.  For being on the road so much and away from everything familiar to her, she did great and I’m such a lucky mom for that.

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So, back to the driving portion of the trip.  E handled 23 hours on the road better than the two grown-ass women in the car did.  The secret?  Playing “The Secret Life of Pets” movie over and over and OVER AND OVER.  As long as that movie was playing, E was a happy camper.  Oh, and a continuous pile of Teddy Grahams may have contributed to our success.

All in all, I feel confident that E will be a good traveler.  I know now that next time, not planning for E’s food is not an option.  I don’t fault my family for how things went.  They don’t deal with it every day.  They don’t experience it firsthand.  They don’t understand, like many people don’t until you’re in my shoes.  It just means that we cannot successfully travel anywhere without truly planning out how we’ll feed little E.  It will never work to assume that anyone will understand our situation and adapt to it.

Awareness

Let’s take a break from my usual E shenanigans to get real.

Food Allergy Awareness Week is May 14-20.  Before I had a child with food allergies, I never understood just how serious food allergies can be or how difficult they are to accommodate.

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Part of spreading awareness of food allergies is to help people who don’t deal with them, to learn about the seriousness and the risks involved.  The other part of it is something different and a little harder to explain.

Yesterday at work I was discussing an upcoming company picnic with some colleagues.  After asking if I can bring my own food for the cooks to grill for my daughter, a few people asked about E’s allergies.  I explained and one of them scoffed and said, “Oh my god, she is going to HATE life!”

Wait, what?  Is that the stigma attached to food allergies?  That the people who have them are suffering not from the effects of the allergens but from the fact that they can’t have cheese or peanut butter or wheat?

E is one of the happiest babies I know.  She loves food.  More importantly, she loves the food she can have.  She’s never had cheese or eggs or peanut butter.  She doesn’t know she’s “missing out” on any of these things.  But she does know that her almond milk yogurt and her pea protein milk and her Daiya “cheese” and her cashew butter are all delicious.  My husband and I don’t often snack on things she can’t have, but when we do and she wants to try some, we walk her to the pantry and find one of her snacks and she’s totally satisfied with it.  She doesn’t dwell on that food she didn’t get to try.

I know it won’t always be this way.  One day she’ll be old enough that we’ll have to explain to her why she can’t have things that other people are having.  We’ll have to make sure she is aware, just like I’m hoping to make others more aware.  But by the time that day comes, I’m hoping I’ve done a good enough job as a mother to ensure that she doesn’t hate her life because of food she doesn’t get to eat.

If you don’t know anyone with food allergies now, chances are you will meet one soon enough.  Today, one in 13 children is affected by a food allergy, and 15 million Americans have a food allergy (source:  FARE).  If there is anything you take away from this post, please let it be that people with food allergies are not miserable because of the foods they can’t eat.  It’s actually just the opposite:  they’re NOT miserable because they steer clear of the foods they can’t eat.  Every three minutes, a food allergy sends someone to the ER.  Would that be worth it for a bite of ice cream or a PB&J sandwich?  No.  Definitely not.