Updates: Flu shot reaction, teal pumpkins, milk madness, and more…

Grab a cup of coffee, because this post is going to be heavy and detailed.

It’s been two months since my last post. We decided to put our house on the market to move 15 miles outside of the city, and life has been bananatown for a while. We finally made it into the new house a week ago and I am just now opening my laptop for the first time in weeks.

Let’s back up to life being hectic. It may have sounded like it was all from the move, but it wasn’t.

About a month ago, Emily had a suspected UTI so I took her to the pediatrician for a urine test. While we were there, I decided to get her flu shot out of the way. I was filling out the form and asked the nurse for clarification on the question about having an allergy to any component of the flu vaccine.

“She’s allergic to egg, so should I answer ‘yes?'” I asked.

The nurse swiveled around with a concerned expression. “Has she had the flu shot before?”

“Yes,” I replied.

“And has she ever reacted to it?”

“Nope.”

“Oh, okay…go ahead and mark ‘yes’ on the form, and will you please include an explanation as well?”

For anyone reading who doesn’t know the significance here: most flu vaccines are incubated inside of chicken embryos, which means the vaccine can contain small amounts of egg protein. Most of the time, this is not a problem–even for the most sensitive of egg allergic patients–but on rare occasion, it does cause a reaction. Prior to 2018, healthcare providers were required to ask all patients about potential egg allergies prior to vaccination, and in many cases egg allergic patients were expected to be monitored for 20-30 minutes after administration. This is the first year the CDC claimed the risk was so low for a serious reaction that these measures no longer need to be taken.

So back to our visit. Emily got the shot, took it like a champ, got a cute bandage and a Paw Patrol sticker at check-out, and off we went back to preschool.

We arrived at school 25 minutes later. The kids were outside playing, so there was one teacher inside of a quiet building when we arrived. I let the teacher, “L,” know about the flu shot and that most likely Emily would be fine, but I did ask her to keep an eye on her just in case. At worst, I was expecting Emily might get a rash.

But as we were standing there, Emily suddenly got heavy in my arms and leaned her head on my shoulder. I lifted her up to see she was drooling profusely all over her hand and my arm. I asked her why she was drooling and she stuck out her tongue, unwilling (or unable, is my guess now) to put it back in her mouth. I asked if she was okay and she put her finger in her mouth and pointed at the back of her throat, crying as she tried to describe to me what she was feeling but unable to put words to the sensation. She was growing more frantic by the second, and then she began to cough while begging for her rescue inhaler. At this point, L and I were both panicking. We laid her on the floor and the school director came in. Emily’s tongue was swelling. The director listened to her chest, heard wheezing, and urged me to get Emily to the hospital, so off we went. (Please see the end of this post for information about my failure to use an Epipen.)

The hospital is a quick drive from the school. I literally ran with Emily in my arms to the ER entrance, where I explained to the man at the front desk what was going on. A nearby nurse rushed over, began asking questions, and before I could blink, we were being escorted to a room by a team of nurses. In the blink of an eye, Emily was hooked up to monitors with a team of nurses huddled around her, checking her vitals. In the meantime, I was on the phone with B, who was in Florida at the time for work (which was also the day Hurricane Michael hit land not too far from where he was staying). My mom was rushing to meet us at the hospital.

Emily was miserable, confused, and scared. Shortly after we arrived, the ER doc rushed in and again took her vitals. Her oxygen was a bit lower than ideal but it wasn’t at a dangerous level. She was, despite everything, breathing okay. The doc decided to administer a heavy dose of Benadryl and an oral steroid to combat her reaction. Within half an hour after the medications were given, Emily had perked up and was acting more and more like herself by the minute. After three hours of monitoring, we were cleared to go home. My mom stopped to get food on our way back, and while she dished up Emily’s dinner, I excused myself to the bathroom and bawled like a baby.  I have never, ever been more afraid in a single moment in my life than when Emily’s reaction first began. That whole afternoon, I had kept my composure and stayed strong for her, and the first second I had to be alone after I knew she was going to be okay, I broke down in a way I’ve never felt before.

We kept Emily home from school the next day and I spent the day speaking with nurses and doctors at her pediatrician’s and allergist’s offices. Over several phone calls, I was asked several times if she has a known egg allergy. I found this slightly alarming; if the vaccine is supposedly so safe for egg allergic patients, how is it that more healthcare professionals than I can count on one hand immediately made the connection between the egg allergy and the reaction Emily experienced? Her pediatrician is a firm believer that the reaction was caused by her egg allergy, while her allergist is uncertain whether it was the egg allergy or if she reacted to some other component of the vaccine. Because Emily is asthmatic, B and I want to protect her from the flu as much as possible, so the allergist recommended the 10% / 90% method for next year.  In the allergist’s office, she will be given 10% of the vaccine and monitored closely for any signs of a reaction. If she tolerates it, she will be given the remaining 90% and monitored an additional 30 minutes; if she reacts in any way to the 10%, she will not get the full vaccine.

After life calmed down, which took some time for my anxiety to fade, I got back to work throwing a community teal pumpkin painting party to raise local awareness for the Teal Pumpkin Project. I interviewed with the local newspaper and had a fairly good turnout at the party and a huge amount of support online. Last year there were approximately 10 houses on the Teal Pumpkin Project map for our metropolitan area (of about 600,000 people). My goal this year was to raise enough awareness to get 50 houses on the map, and by Halloween night there were over 60!

On Halloween, I drove Emily to a neighborhood with two houses on the Teal Pumpkin Project map that were close in proximity. In our old neighborhood, trick-or-treating was practically nonexistent. Only after we parked in the subdivision we’d driven to did I notice there were flyers up all around the neighborhood encouraging residents to participate in the Teal Pumpkin Project! We literally, by chance, stumbled into a gold mine of teal pumpkin houses. Emily came home that night with a bucket FULL of toys, and she beamed over the whole experience for days afterward. As a mother, it was one of those moments that makes you want to happy, messy cry.

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Do you think she likes her loot?

Final update for this post: still no definitive answer on the whole baked milk issue. I think we’ll be having a long, inquisitive conversation with the allergist in January.

WHEW. Is that enough for one post?!

 

Epipen note: When Emily reacted to the flu vaccine, I did not administer her Epipen. I had them in my hand, and while I knew I should have done it, what stopped me is that her breathing wasn’t labored and she was still talking. I felt like it wasn’t “justified,” even though it was a reaction bad enough to send us to the hospital. It is hard to explain what goes through your head, the “should-I-shouldn’t-I” when it comes to administering an Epipen to your child. Part of the reason I cried so incredibly hard when I got home that night is because I was, and I still am, beating myself up over the fact that I did not do it. Looking back on it now, I cannot believe my own hesitation. I’ve seen this before from other allergy parents. As miraculous as an Epipen can be, it is not as easy to pull that trigger in every instance as it seems like it should be.

Having said that, I should have done it, and the next time we have a reaction where I find myself playing the “should-I-shouldn’t-I” game, I’m doing it.  No hesitation, no regret.

 

Breathe easy

We’re now a few weeks into our baked cheese trials and I can’t say with certainty they’re going well.

On the one hand, Emily hasn’t experienced hives or swelling.  That’s super.

On the other hand, I’ve started to notice a correlation between her consumption of baked cheese and her asthma flaring up.

I’ve been keeping a log to document anything that may contribute to her bouts of wheezing and chest rattling she’s been getting off and on since…well, coincidentally since we started the cheese.  I’m documenting anything ‘abnormal’ she eats (like cheese), pollen counts, illnesses and stress, and other random things like when we visit someone else’s house.  Anything that is not a daily occurrence.

So far, it’s all been occurring in conjunction with a bite or two of cheese here and there.

Fuuuuuuuuuu

dge.

I’m still crossing my fingers for a coincidence.  Chenopod counts are high here and they’re bothering me and B (we both have seasonal allergies).  But they’ve been high for weeks and her asthma comes and goes. Emily also complains of increased itchiness after the baked cheese, even though there’s no visible reaction on her skin.  Last night, following two bites of cheese in the morning and a handful of goldfish in the afternoon, she brought me her rescue inhaler and asked me to administer it to her.  She knows the ‘red’ inhaler is the one she gets when she’s having asthma symptoms, whereas the orange one is her daily, no-matter-what inhaler.  She intentionally brought the red one to me.  Her breathing was fine, but it’s a suspicious request.

So we’ve just been over here trying to solve yet another mystery.

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In happy news: we attended another barbecue over the weekend, and after that last one I was on the edge of my seat.  We brought vegan pasta salad, and Emily was able to have everything there except for the cheese spread and the cheese-wrapped prosciutto.  She had no reactions and tons of fun!

A bite of cheese, a reaction, and a chance to raise awareness

Oh em goodness, I’m gonna have a lot to say in this post.  Get comfy and grab a snack.  (Preferably vegan and peanut-free.)

Contrary to what you might think reading the post title, the bite of cheese and the reaction are completely unrelated.  But strangely that’s the good news.

First things first: last weekend we did our first baked cheese trial.  We gave Emily a bite of pizza with real cheese (her FIRST EVER taste of real cheese) and she not only loved it, but she tolerated it.  No reaction whatsoever.  I was on cloud nine.  I decided that each weekend, we’ll give her the same amount of baked cheese plus a tiny bit more, and monitor closely each time.  I’ll also have to keep an eye on her overall for GI upset or increased eczema.

Baby steps.  But big baby steps, if you know what I mean.

As exciting as that was, last weekend wasn’t all sunshine and rainbows.  We joined some friends for dinner last Sunday, and they grilled steaks served with corn salad and fruit.  After we arrived, they realized Emily couldn’t have the corn salad because it was made using corn that was slathered in mayo and then grilled.

When we headed home that evening, Emily was scratching at her neck and I discovered she had a rashy patch of tiny hives along her collarbone.  By the time we got home, her whole face was also covered in a rash and she told me it hurt.  It’s that thing that stresses me out every time we eat anywhere other than home.  Cross contamination is a bitch to avoid, and it could have been a hundred different things.

We gave her some allergy medication and laid her down for bed, but she was clearly uncomfortable and it took some time for her to fall asleep.  The entire night, I pondered what may have caused the reaction as I checked the monitor every ten minutes as I do any time this happens.  It wasn’t until the next morning that it dawned on me: the corn.  It was slathered in mayo and then grilled, and then the steak was cooked on that same surface.

That’s all it takes.

Being an allergy mom is hard because you take so many extra precautions that you go a certain amount of time without a reaction, and you start to get comfortable.  The more comfortable you get, the easier it is to forget about those little possibilities.  You let your guard down, essentially, and unknowingly open the door to a dangerous situation.

I felt guilty for days, but I learned from it.  We had dinner at my mom’s house last night, where she grilled hamburgers, and I made sure to ask if she’d grilled anything EVER that contained peanut or egg.

Emily was a little itchy the day after the reaction, but I’m grateful that was the worst of it.  Then on Tuesday I received a message on the Idaho Food Allergy Fighters Facebook page I manage.  It was from a local news reporter who wanted to know if I or anyone I know had experienced trouble getting an EpiPen here locally, what with the national shortage going on.  I shared our experience from July when our pharmacy had “no ETA” on an EpiPen and we went without for about a week.  We exchanged a couple of messages and she then asked if I was available for an interview the following day.

I had expected the interview to be solely about the EpiPen shortage, but the reporter wanted to get to the heart of the issue:  the severity of food allergies.  She wanted to report not only WHAT the EpiPen shortage is, but WHY it’s terrifying to families dealing with food allergies.  We spoke for an hour and yesterday the story aired on the news and shed light on an important issue that is extremely overlooked in our community.  You can see the story here.

When I told my boss I was taking some time off of work that day for the interview, she beamed proudly and told me she can imagine me starting up a nonprofit one day.  It was one of the most incredible things anyone has ever said to me!

Pizza Party

Earlier this week a flyer went up at day care.  Pizza party this Friday–please bring $3 to cover the cost of pizza for all the kids.  This isn’t the first time it’s happened and it certainly won’t be the last.  Since I can’t ask the day care not to throw parties centered around food my daughter can’t have (but why am I not allowed to be selfish for the sake of my child’s well-being?), it’s not exactly an easy predicament to be in.

The last time this happened, about six months ago, the party was mac and cheese themed.  I mentioned to the day care director that I felt bad my daughter was going to see every kid in the facility eating the same food except for her.  I had planned on bringing her own pasta, but she would undoubtedly notice the difference.  The director responded by saying, “I’m sure she won’t even notice.”  I told her that was a load of bullshit, though in much more sophisticated language.  At two and three years old, toddlers are obsessively interested in what other kids have and are doing.

So here we are again.  This time it’s a pizza party.  Luckily there’s a pizza place not too far from day care that makes vegan pizzas with Daiya cheese.  They deliver, so I thought I’d just pop online, order using my debit card, and have it delivered to the day care.  Only once I got to the order checkout page did I discover you can only pay with a card when physically present at the restaurant.

I’d had plans for my lunch break and now I had to scrap them so I could go pick up the pizza, pay for it, and drive it to the day care.  I was annoyed, not with having to accommodate my daughter but with the day care for even having a damn pizza party to begin with.  I took an early lunch, picked up the pizza, and made the delivery.

When I walked in, all the toddlers were outside except for Emily, who was inside using the potty.  She came out of the bathroom when she heard my voice and she was SO HAPPY to see me.  She didn’t even know yet that I’d brought her a pizza.  I spent a few minutes with her and then headed back to work.  As I drove away, my frustrations melted entirely.  I try really hard to look at the bright side of these situations.  I got hugs and kisses from my daughter in the middle of a workday, and she was ecstatic over the surprise visit from mommy.  And not only did she get to have pizza like all the other kids, but she got to have a custom pizza all to herself with her favorite toppings.  Who really won in this situation?

That’s right.  My kid did.

Except for the fact that all the kids got Creamies for dessert, and I wasn’t aware of this until I delivered the pizza.  Emily got an Otter Pop instead but that’s not the same as ice cream on a stick.

Anyway.

This weekend is our baked cheese trial.  I’m nervous as all get-out.  Emily’s been having some eczema flare-ups (albeit small ones) and she had some green #2s in the potty this week, which are both things we experienced when she was first diagnosed.  So we’ll see.  I’ll have Benadryl handy and I won’t get my hopes up.

The great cracker goo panic

Last weekend we battled a second stomach bug after recovering from one just a few weeks ago.  *sob*

We were headed to a pig roast on a farm about 40 minutes from our house. The people who invited us were incredible–they made vegan rolls special for Emily and bought her a pint of coconut milk ice cream so she wouldn’t be left out. It’s a gesture very few people offer and it warmed my heart.

Unfortunately, on the drive out there, I heard that undeniable, gagging-followed-by-a-miniature-splash sound, and turned around to find Emily throwing up all over the back seat. We pulled over in the middle of farmland nowhere and cleaned her up next to a canal with only baby wipes and Kleenex. (Side note to my fellow parents: never, EVER, travel without towels in the car.)

Emily had her heart set on seeing cows and horses, so we carried on the last few miles and arrived at the farm. It was obvious pretty quickly that it was no minor upset stomach. Emily was burning up, didn’t want to play with the dogs or other kids, wanted nothing to do with food, and wouldn’t leave my lap. We headed home before the food was served, although we did get to take her ice cream and vegan rolls home with us.

So when I got a call from Emily’s day care earlier this week, I knew it would be one of two things: either she was still sick, or there was food allergen exposure. The call went something like this:

Teacher: So, I have a little bit of a concern…
Me: Okay, what’s up? (Already my heart rate has doubled.)
Teacher: Well…Emily can have Ritz, right?
Me: Yep.
Teacher: Okay. Well. We passed out plain Ritz crackers to all the kids, and then we noticed what looks like peanut butter on all the crackers. I tasted it, and some of the other ladies tasted it, and we’re pretty certain it’s peanut butter.

NORMALLY at this point, I would be in the midst of a panic attack. However, I knew immediately Emily was fine. The “peanut butter” on these Ritz crackers was not, in fact, peanut butter. It’s something known in the allergy world as “cracker goo,” and it’s a paste of oil and salt that builds up during the manufacturing process. It looks, smells, and tastes eerily similar to peanut butter. I knew this. I’ve seen it. But it was new to Emily’s teacher, and she was having a mental breakdown as she dialed my number to tell me Emily had consumed peanut butter.

After explaining cracker goo to her, I asked her to keep a close eye on Emily JUST IN CASE. We disconnected the call and she immediately texted me, telling me she was shaking and in tears. She’d been so worried. I reassured her that even if it had been peanut butter, she had done nothing wrong. Accidental cross contamination is, unfortunately, not uncommon. It could happen to anyone–even me.

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Strangely enough, not peanut butter.

Emily was in the clear, but when I picked her up she made sure to tell me her teacher told her no more Ritz. It’s silly that it pained me, but it did. Emily loves Ritz crackers and she eats them all the time. She couldn’t even begin to comprehend why the teacher took them away from her but not the other kids. Yet, the teacher did exactly what she should have done. I did my best to explain to Emily why her teacher took away her crackers, but I could tell it wasn’t registering. These are the moments–the ones that seem so insignificant–that the emotional weight of parenting an allergy toddler bears down pretty hard.

Other than that, things have been calm and easy around here lately. We still have no issues with baked milk–next weekend is the pizza test!

A few nights ago, Emily helped me make mini banana chocolate chip muffins. The recipe called for egg so I used aquafaba. This was only my second time using it; the first was about a month ago when I made molasses cookies. After two successes, I am SOLD on aquafaba as an egg replacer. I have never before made muffins that were so light and fluffy, that didn’t crumble apart. I really wish I had known about aquafaba a year ago when we started the weekly muffins.

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My kitchen is not always this messy.

One last thing before I wrap up my ramblings: can I just talk about how horrific food allergy nightmares are? I had the most vivid dream last night that Emily ate peanut butter at day care and that it caused her so much pain she started thrashing around and cracked her face on the side of the toilet. It’s disturbed me all day. NOT COOL.

Food allergy princess

Oof, it’s been a hot minute. Last week was a bit on the busy side. So what’s been going on?

Baked milk is still going beautifully. Emily is enjoying that she gets to try new foods and we haven’t had any reactions or eczema flares. If we’re still in the clear in two weeks, we’re going to try that bite of pizza.

To be honest, though, I make a point to not tell her there’s milk in these foods she’s eating. I’ve drilled it into her so hard that she can’t have milk that the one time I let it slip the cookie she was eating had milk in it, she questioned whether or not to continue eating it. I’ll admit I’m super proud of her for that.

This past weekend we attended a birthday party for my friend’s daughter who just turned three. It was princess themed and Emily was stoked to wear her princess dress. I took this GORGEOUS photo of her and it was only when I looked at it later that I remembered she was wearing her medical alert bracelet at the time. There’s a hidden message there, I suppose–even princesses can have food allergies.

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The hostess had arranged a platter of cupcakes to look like Belle’s yellow dress, and Emily eyed them the whole afternoon. When it was time for cake, I gave Emily the allergy-friendly cupcake I’d packed for her and she didn’t even bat an eye at the yellow cupcakes everyone else was eating. She was just happy to have cake (or rather, the frosting on top). After cake, however, the party favor bags were passed out and there was some candy inside without ingredients listed. Emily was begging to eat it but we just couldn’t let her. It wasn’t worth the risk.

Hope you’re all having a fantastic week!  I’m off to Whole Foods soon to buy some Heidi Ho “cheeze” to make some mac and cheese for dinner.  B is working late and he won’t touch the stuff, so I’m taking advantage of this opportunity.

It’s my party and I’ll bake if I want to

This past week I celebrated my 33rd birthday.  Sadly I rung it in staying up all night with a vomiting toddler and then spent almost three hours at the DMV on a negligible amount of sleep.  I’ve had better birthdays.

My birthday was on a Monday anyhow, so we didn’t celebrate until this weekend.  We threw a barbecue and invited a couple dozen family and friends.  Normally get-togethers tend to be on the stressful side.  I have to pester the host about the menu, trust that they understand the seriousness of my inquiry, pack separate food for Emily just in case, potentially watch Emily watching everyone eating different food than what she has, and then watch her like a hawk so no one tries to feed her something that’s not safe.  At one of my own family’s get-togethers once, an aunt got snippy with me when I panicked over another child handing a milk-laden snack to Emily.  It’s hard not to carry anxiety around with me at these gatherings.

It’s different hosting your own party.  We provided most of the food and on the invite, B requested that if anyone brought food they bring something dairy, egg, and peanut free.  A few guests brought side dishes and they were all Emily safe.  For my birthday I got something that doesn’t come easily these days: a chance to have a drink and relax with my family and friends, comforted by the knowledge that my child was safe and able to eat everything the rest of us were eating.

B is a grill master but he definitely isn’t a baker.  I absolutely love to bake, so I made my own birthday cake/cupcakes…all vegan and nut-free, of course.

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Annnnd I think it’s safe to say Emily was a fan.  (She ate two.)

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The cupcakes were gone before I could even blink, and at the end of the party only four thin slices of cake remained.  The kids all went bananas for it and one friend said it was the best vegan cake she’s ever had.  I think people really underestimate how delicious certain foods can be even without eggs and milk.

So that was my birthday.

Let’s go back to that vomiting business for a second.  Emily had a 24-hour bug and shared it with me, kind of.  I never threw up but my stomach was iffy for a couple of days.  One night for dinner I wanted absolutely nothing except for a package of beef ramen I found in our pantry.  I usually will not eat foods in front of Emily if she can’t have them, too.  Ramen contains milk and eggs, and in this instance I made an exception because I hadn’t been eating much.  I made Emily a plate with a sandwich and some crackers and set up her little table in front of the TV; I’d hoped some cartoon dinner entertainment would distract her, but that kid has a radar for her mom’s food.  As soon as I sat down she climbed up next to me.  “What eating, mommy?  Those noodoos?”

Shit.  I explained to her that she couldn’t eat them because they have milk and eggs in them, and while she seemed content with this explanation she also continued to stare me down and ask questions about my noodles she couldn’t have.

I seriously felt awful.

Friday night, we went to Costco to buy stuff for the barbecue and I stumbled upon a package of brown rice ramen.  It’s made of brown rice and organic millet, and it looks and cooks just like the Nissen ramen you can buy at the grocery store.  It doesn’t come with seasoning, so I cooked some up and added a small splash of soy sauce.  Emily went bonkers for it!

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I also tried it and fell in love with it.  And it’s much, MUCH healthier than the Nissin ramen.  I’m seriously stoked to try out some recipes with these noodles!

 

So far, so good

You guys.  Baked milk is going GREAT!

It’s been exactly one week and Emily has consumed baked milk all but two of those days.  Her skin looks fine, no tummy troubles, and honestly nothing concerning is happening.

After those first two days when she refused the majority of the snacks I offered, she opened the pantry one evening and begged to have a Nutrigrain bar and some of the puffed corn snacks.  So far, here’s the list of baked milk food items she’s gotten to try:

  • Sunmaid raisin bread
  • Mixed berry Nutrigrain bars
  • Gerber baby puffed corn snacks
  • Pretzel Goldfish crackers
  • Orowheat oat nut sandwich bread
  • Some sort of butter cookies from our local grocery store bakery

The corn snacks and Nutrigrain bars have been the winners.  I’m going to try keeping up with a three days on, one day off routine as long as she continues to tolerate it well.  I’ll give it a couple of months and if all is still well, we’ll ambitiously try that bite of pizza.

Speaking of pizza.  There is a Blaze Pizza about 30 minutes from our house, and we’ve eaten there a couple of times but it’s such a long drive just for pizza.  I love Blaze because while many pizza places have vegan crusts, it’s the only one I’ve found that also offers vegan (Daiya) cheese.

I discovered last week there is an Extreme Pizza less than ten minutes from us.  Like Blaze, Extreme Pizza also offers Daiya cheese.  The nice thing about Blaze is that they make your pizza right in front of you, so I had the ability to watch for cross contamination.  Since this is a worry, I reached out to our local Extreme Pizza via Facebook and asked about their cross contamination prevention.  Here are the first few exchanges we had:

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The conversation did continue a bit, and when I finally told them I was excited to try it out, they sent me a coupon.

We tried Extreme Pizza last night and I mentioned to the woman who took our order (who also prepared the pizzas) that we had a dairy allergy.  She said they have quite a few customers with dairy allergies, which is nice–we all know how hard it is to dine out and avoid dairy.  When she brought out Emily’s pizza, she assured us she’d used clean equipment and taken precautions to keep her pizza safe.  YASSSSSS.

After asking if her pizza was ready a gajillion times, here’s Emily with a mouthful of pizza.

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Baked milk, days 1 & 2

Since getting the allergist’s all-clear last week to incorporate more baked milk in to Emily’s diet, I’ve learned this was all much easier said than done.

First, let’s talk about how difficult it is to find foods containing baked milk that Emily can eat.  “Baked milk,” as it relates to a child who is dairy-allergic, doesn’t simply refer to anything dairy prepared in the oven.  Dairy items more solid in nature don’t break down the same way liquid milk does.  Things like cheese and chocolate chips, for instance, are not considered safe quite yet.  Also, things like cheese crackers contain milk but they’re often dusted with a cheese powder, which is still off-limits.  But I mean, milk seems to hide out in just about everything so I thought the addition of baked milk into our lives would open a lot of doors that have been closed to us thus far.

Wrong.

As it turns out, 94.98519304% of baked items containing milk also contain egg.  (I made that statistic up but I’m 96.24324208% sure it’s relatively accurate.)  If they don’t contain egg, there’s a chance they “may contain peanuts.”

I started out with a loaf of Sunmaid raisin bread, a box of mixed berry Nutrigrain bars, and a package of baked corn puffs.  I’m fairly certain these are the only three baked-milk-safe items my local Target has to offer.  Thank god for hour-long lunch breaks so I could read through a hundred food labels.

I waited to begin our baked milk trials until Saturday morning so I could watch her like a hawk throughout the day.  For breakfast I offered her a toasted slice of the raisin bread with vegan butter.  She loves raisins, she loves toast, and she loves vegan butter.  So this was the perfect food to start with, right?

Wrong.

Emily ate the first three bites and then pushed the plate away and mumbled that she didn’t like it.  She proceeded to beg for chips for breakfast, so I promised her she could have chips if she finished her toast.  It took almost an hour but she finally finished the slice of toast and was rewarded with a handful of chipotle Ritz crisps.

A couple of hours after eating the raisin bread, Emily scratched quite a bit at her arms and complained of being itchy, but she never got a rash or hives or any other indicators of a reaction.  The itchiness persisted for roughly half an hour and she didn’t complain any further after that.

Today I offered her the baked corn puffs, and she refused to even taste them.  I offered her a Nutrigrain bar and she refused to taste it.  I made a batch of biscuits and she refused to taste them.  Mid-day we went grocery shopping and I bough all kinds of new baked milk snacks to try.  I offered her butter cookies and she refused to taste them.  I offered her pretzel Goldfish crackers and she ate one and refused any more.  I offered her some crunchy baby snacks and without tasting one, she shook her head and said, “That has peanuts?”  It didn’t, but then I started to wonder:  can she sense this is all stuff she normally can’t have?

I backed off for a bit at that point.  Later in the day she asked for a snack and I again offered her a butter cookie.  This time she gladly accepted and appeared to enjoy it.

In the evening she had itchy eyes but no visible skin reaction.  It’s hard to tell if it was related to the cookie since I also trimmed her bangs after dinner.  I do admit that I worry about her refusing all of the food, and I don’t want to push too hard in case it is her intuition telling her it’s going to make her sick.  For the week, I’ll likely back off because she’ll be at day care and I won’t be able to watch her as closely.

In the meantime, I’m thankful to be raising a dairy allergic toddler in a time when there are so many substitutes.  We visited our favorite local boutique ice cream shop this weekend and Emily had a scoop of the vegan cookie dough ice cream.  She thought it was the bee’s knees!

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Follow Up and Some Potentially Great News

Emily had a follow up appointment with her allergist today.  It’s been one month since she was diagnosed with asthma following an urgent care visit for labored breathing.  She’s been on Flovent for three weeks after an attempt at Singulair made the asthma even worse, and it’s worked *wonders*.

At the same time, we followed up on Emily’s food allergies.  Since her diagnosis at five months old, we’ve had her retested every six months.  Because her IgE numbers for egg and peanut have been so high at every check, at this point the allergist has decided to test once a year rather than twice.  We tested in January, so now we’ll wait another six months and see what happens then.

However.

We’ve been doing the at-home baked milk challenge for a year, officially.  Six-ish months ago, Emily got one bite of another kid’s yogurt at day care and broke out into hives on both sides of her face.  Four months ago, we tried doubling the amount of baked milk she was getting and she got patches of eczema all over her body.  But five days ago, she accidentally got about a teaspoon of raw milk and absolutely nothing happened.

Now the allergist wants us to increase the baked milk again.  If Emily tolerates it with no reactions, we’ll continue to give her a wider variety of items containing baked milk and keep an eye on her.  This could open a door to a whole new world of foods for her.  And if all of that goes well, after some time he wants us to give her (drum roll, please) A BITE OF PIZZA.

It seems silly when you say it just like that:  “My kid might get to take one single bite of pizza!”  But that’s what this life is.  You celebrate really…small…victories.  It’s something most parents probably take for granted, and the thought of it is bigger to me than words can describe.

small wins

Yet I don’t want to get my hopes up, either.  I’m cautiously optimistic.  Food allergies are unpredictable, and I’m more than aware that the lack of a reaction recently could have been a fluke.  I’m just praying it wasn’t.

I’m going shopping tomorrow so we can start our trials this weekend, when I’m able to watch her for any signs of a reaction.  Hoping to have a positive update in a few days!