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:

IMG_2288.JPG

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.

IMG_2788 (1)

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.

IMG_2797

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.

Advertisements

Scares and Steps

Let’s start with the good news first:  E took her first steps!  It was just a few–twice–and it hasn’t happened again in the past four days, but it was refreshing to see that she’s gained enough confidence to try to do it on her own.  Now she walks simply “holding” my pointer finger, and by “holding” I mean barely touching and not realizing that she’s actually walking on her own and I’m not doing a thing to help her.

The not-so-good news:  we had a major allergy scare the other night.  B was working a bit late so E and I had a makeshift breakfast for dinner: cashew butter toast with a side of hashbrowns.  It was nothing E hasn’t eaten before and there should have been zilch to worry about.  Halfway through the meal, though, a dark red rash spread across E’s face in a matter of seconds.  Hives began to pop up everywhere and then the same thing happened to her hands, and then her collarbone.  My first thought was Oh shit, somehow a peanut was ground into the batch of cashew butter.  My heart began racing and my whole body was tingling, and in the midst of a full-blown anxiety attack I completely shut down for half a minute as I tried to determine my next step.  I finally came to my senses enough to give her some Benadryl, and then I watched closely for any difficulty breathing.

Half an hour later, I finally began to calm down.  We were in the clear.  The Benadryl had started to work its magic and E was doing just fine.  Even still, I watched the monitor like a hawk after I put her to bed.  Just to be sure.

noepi

Until recently, I had (stupidly) assumed food allergy scares would be few and far between.  We avoid purchasing any food that’s processed on the same equipment as milk or eggs.  We avoid purchasing any food that’s processed in the same facility as peanuts.  Even though the cashew butter label reads “May contain almonds” and does not have a warning about peanuts, I was utterly terrified E might have accidentally ingested a peanut via her cashew butter.  Although her recent reaction wasn’t pretty, it wasn’t because of her cashew butter.  She’s had it since without so much as a single hive appearing on her body. So how do allergy moms curb their anxiety?

I’ll circle back and answer that question later.  Six months, maybe.  A year, maybe.  Over time, I have to learn.  I have to find a way to handle allergy scares without having a paralyzing anxiety attack.

anxious

Dramatic post aside, we’ve been finding so many things for E to eat.  Newest favorites:  vegan blueberry waffles, Triscuits (they must feel good on those gums), whole peeled apples, frozen peas, Larabars, raspberry sorbet, and banana bread.  This girl LOVES her food!

Updates galore

Since my last post promised an update on the toddler protein powder, I should start there:

IT SUCKS.

Well, I don’t know if it sucks.  I refuse to try it.  It creates what looks like dirt water and E hates it.  We tried giving it to her straight, mixing it with almond milk, sneaking a small amount into her formula bottles–she can detect this stuff from a mile away.  She’s not having it.  So we’re on to plan B.  I’m still working out “plan B” in my head and doing lots of really odd Google searches, but baby steps amiright?

On the bright side, we’re making some great progress with alternative milk cooking methods.  Oat milk has become a staple in our pantry.  I’m going to do a bit more with rice milk this week and I’m actually excited about it!

rice-milk

On the peanut allergy side of things, I’ve noticed my anxiety is much higher these days.  E’s day care called me last week to ask if they could give her some Tylenol for her molars coming in; but when their phone number flashed on my caller ID, my heart started beating so fast because the first thing I thought was, Oh no, did they have to use her EpiPen?  That same night, I noticed some hives on E’s tummy when I was putting her pajamas on.  She’s an allergy baby all around so it could have been anything; but when I noticed she slept for several hours in the same position without moving (she moves around a LOT in her sleep), I started to worry it had been worse than just a rash when I put her to bed.  Because when you have a kid with severe food allergies, you just never know.  Of course I’d been over-paranoid and E was just fine, but I’m trying not to feel silly about it.  I feel like if I go even one moment without taking it seriously, that’s when something will happen.

fullsizerender-17Allergies aside, E is loving life.  She’s working insanely hard to stand up on her own without holding on to anything; she can pull herself into a squat position on both feet but then she falls to her butt.  She inherited a push walker from a friend of mine and she spends about half of her awake time at home pushing it around the house.  E’s communication skills are getting better every day.  She shakes her head no to things she doesn’t want, she starts to wave and say “bye bye” (pronounced “dye dye”) whenever we start getting our coats and shoes on, and she’s finally started to obey when we say the word “no.”  Lastly, we just survived E getting two molars and two front teeth at the same time–it was a brutal week, but we got through it and there is a night and day difference in her mood.  Even though it was rough, I’m relieved we got four over with at the same time!

For those of you who are interested, I’ve started a “Recipes” page where I will list links to all of the dairy/egg/peanut-free recipes we’ve tried and loved.  So far there are only a few, but my hope is that over time it will grow and grow, and that maybe eventually I can add some of my own to this list.

Food Allergies and Day Care

When you send your baby to day care, there are a hundred things you have to make sure the day care teachers do for your child.  From meals to naps to medicine, you wonder how they manage to juggle all of the information for all of the different babies they care for every day.

Then some of us add food allergies into the mix, and it’s terrifying.

E’s day care provides two snacks a day starting when the babies turn a year old.  I will never partake in this perk, though.  I’m the annoying woman who stands in the grocery aisle for five minutes reading the label on a box of crackers ten times before feeling comfortable enough to put it in the cart.  I’m the woman who, no matter how much I trust you, will always worry you didn’t catch that “casein” was on the label or “ghee” or “koumiss.”  Despite the fact that day care offers free snacks for my daughter, I will always be providing her snacks.

fullsizerender-16

E getting acquainted with her tester Epi-Pen.

Having said that, I am overwhelmingly impressed with E’s day care and grateful for the measures they take to protect her.  When the scratch test indicated she had dairy, egg, and peanut allergies, they made a poster and placed it on the wall so it’s in view as soon as you walk in the room.  It’s titled “ALLERGIES” and it lists E’s allergies in big, impossible-to-miss print, along with a note to all teachers to please wash their hands after handling anything containing peanuts.  In case anyone misses the poster, there are post-it notes on the walls and the fridge:  “Emily is allergic to peanuts!”  Once the blood tests confirmed E’s allergies and their severity, day care rearranged the infant room so that the high chairs are surrounded by baby gates.  Now if any of the other babies is eating eggs or PB&J or cheese, E can’t swoop in and pick up anything they might drop on the floor.

It’s incredibly comforting to me that E’s food allergies are taken seriously by the people who look after her day to day.  I know day cares see this kind of thing every day and they have to be prepared–but we also live in a world where things get overlooked and people get lazy, and it’s a hard thing to be a mama of a baby who could accidentally find some peanut butter on the floor and that such a small thing can be deadly.  So I’m terribly grateful E’s day care has taken the measures they have for my baby.

Do you have a child with allergies who’s in day care?  Do you feel comfortable with the day care’s policies and precautions for kids with allergies?

Table Food for the Allergy Baby

E’s former doctor referred to her as the “allergy baby.”  It’s true, E does have a lot of known allergies…already…and unfortunately, two of those allergies are to dairy and eggs.  E is over ten months old now which means she’s getting a couple of “meals” of solid food every day.  Recently E graduated from purees to table foods, but at times this is proving to be a challenge. A lot of my mom friends give their babies cheese cubes, cottage cheese, yogurt, and scrambled or hard-boiled eggs.  I can’t do that.  In fact, I can’t even give E a piece of bread to nibble on without first scrutinizing the label to ensure there are no “hidden” dairy ingredients.

allergymoms

So, what do I give miss E when she can’t have a lot of the soft, yummy foods babies her age are typically eating?  Here are her current favorites:

  • Pasta.  This girl LOVES pasta.  She’ll eat it plain, but I like to drizzle it in a little olive oil and lightly sprinkle some salt on it for some flavor.  Eventually I’ll make some dairy-free sauces for it, but for now she’s perfectly content with the minimal-effort version.
  • Cheerios.  These are her absolute favorite.
  • English muffins.  Not all of them are dairy-free, but I did find some safe ones at Trader Joe’s and E is a big fan.
  • Almond milk yogurt.  Although E also has a peanut allergy, tree nuts aren’t a problem.  I wasn’t a fan of the almond milk yogurt, but E has a different opinion.  We buy the Almond Dream brand and she can’t get enough.
  • Olives.  I buy the pre-sliced canned olives and cut them in half.
  • Canned fruits and veggies.  For the fruit, I only buy it in 100% juice, not the syrup.  These are nice because they’re super soft and I don’t have to be peeling, slicing, and steaming things to make them soft enough for her to chew.
  • Plum Organics Super Puffs.  When I show E the bottle, she knows exactly what I’m about to give her and she dances out of excitement.  Best baby snack ever!
  • Ground turkey.  Plain.  Sounds boring but E loves it.
  • Shredded chicken.  Plain.  Sometimes this baby makes it too easy for me.
  • Watermelon.  Easy to chew and also good for the days when E is being stubborn about drinking her water.

I should probably mention that we’ve tried oatmeal…twice…and both times, E hated it so much she sobbed uncontrollably until she was positive I wouldn’t try giving her another bite.

E’s next round of allergy testing is in one month.  We’ll find out if she’s grown out of any of her allergies (FINGERS CROSSED!) and if she hasn’t, we’ll be able to do some bake tests and things to find out if she can tolerate small amounts in recipes.  Until then, we’ll keep experimenting and reading labels and growing this list!