Category Archives: Life threatening food allergies

Will this make me die?

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My poor little man.  He LOVES Kinder Eggs.

What are those, you may ask?  OH THEY ARE HEAVEN ENCASED IN CHOCOLATE, I may add.

They are brilliant itty bitty little toys that half of the world loves, the other half hates.  The parents, we are a mixture of in-between.

There are YouTubes.  Millions and millions of hits that have children seriously JUST UNWRAPPING the Kinder Egg and showing what is inside this chocolate delight.

It’s ridiculous…but yet guess what my children choose to watch when they get TV?

Yes.  That’s right—The Kinder Egg kids and these ridiculous toys.

But my children love them…just like the kid next door.  And they are FANTASTIC for bribery!

Yes, I proudly bribe my children and expect great results from said bribery 😉

Even my allergy kid LOVES these surprise eggs…He just has to get a little more creative when opening them.

Sometimes he smashes them open with a hammer.

Other times, he puts on latex gloves.

Once I wrapped his hands in tin foil.

Another time, plastic wrap.

We have taught him to break it open.  Then he waits for us to move the chocolate, clean the table, and wipe down the plastic egg surprise container.

WHY WOULD YOU DO THIS????  You may ask.

Isn’t this a LOT of work?

Yes.  It is.  We do it because in this life he leads, it’s a small amount of time for my boy to be “just one of the guys!”  Even though Just One of the Guys requires lots of prep and cleaning work.

But he is thrilled each time—even though he can’t eat the treat.

Today, however, he surprised me.  I was cleaning the mess that was made (his sister went poopy on the potty, earning her and Maxie a kinder egg—see post here), when Maxwell stated, “Is chocolate what will kill me???”

I stopped and stared.

He got it.

He got that there are foods out there that will kill him.

That if he eats or ingests or even samples them, he very very very very well could die.

And I am not sure if at that moment I was okay, happy, relieved, or sad.

Maybe I was a mixture of ALL because it’s the reality of his world.  But it’s not the reality of mine.  Or his dad’s or his sisters or even his cousins.

My son could die if he simply ingests the wrong food.

And we live every moment of every day making sure that his food is safe so that he will live.

Boy—when I woke this morning, I had NO IDEA that a Kinder Egg would bring such perspective into my life.

Not just the annoying little plastic toy 😉

How you learn to live without peanut butter


Listen.  It is seriously one of the things I miss the MOST about being this allergy mom—peanuts.

Like—my daughter, husband, and I really went through peanut withdrawals once we realized a peanut kiss was nearly the 9-1-1 fate of our son.

I love the salty oils and goodness of snacking on a handful of peanuts.

My daughter’s favorite sandwich is PB&J.

My husband lives for peanutbutter cups.

We, collectively, lived a VERY peanut existence until Little Allergy to the Max came along.

Deciding to put his health and safety above our personal cravings was super hard.

Sorry, folks—real talk here.

We cleared out our home and went 100% peanut free.

And then we missed our sandwiches, apples and celery with PB, and our trail mixes with the perfect salty nut to compliment the flavors inside.

But then we were introduced to Cookie Butter.  I want to say a Dutch invention—but you can Google that yourself.

It’s sweet.  Not salty.  And does not squelch your protein tastebuds for snacking goodness…but it is a phenomenal substitute on many items that we once used with peanut butter.

Instead of PB&J sandwiches, we eat CB&J sandwiches.  And they are delicious!

Instead of apples and PB, we use apples and CB.

Instead of morning toast with peanut butter—we eat toast and cookie butter.

Peanut butter called for in baking recipes?  Cookie Butter substitute.

See where I am going with this?

It’s possible to give up the peanut—but it doesn’t mean you have to give up your favorite snacks!

Well—perhaps your peanut M&M’s.

If you have not given CB a chance, I suggest you try it today!

Of course, after reading the ingredients 😉

Now the question is:  Where do you find it?

When we are in the States, we have noticed that Trader Joe’s has crunchy or smooth.

Here in Europe—the Dutch grocery stores sell it by the tubful.  Perhaps even online.

Happy hunting and smacznego!

Max has yet to ingest a killer peanut…

Look.  My son has pretty much entered heaven.  A couple times.  But not due to allergies.  Ironic, right?  That the thing that I fear most now has not been the culprit of him losing his battle and nearly his life a couple years ago…

This time when he was born:

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Maxwell’s “Birth” day!  Poland NICU

Or this time when he got RSV which turned into full-blown pneumonia and congestive heart failure, putting him into a coma and a recipient of a blood transfusion:

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Poland ICU; Receiving Blood Transfusion

But, let me tell you…if Max is to eat a peanut, he will have an attack that we may not get him back from.

Here is the picture I use over and over again to show the seriousness of peanut allergies—and this is from a kiss on the forehead.  THIS IS NOT FROM EATING A PEANUT.  It’s from a kiss.  A KISS.

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A peanut kiss.

 

 

 

 

 

 

 

 

 

 

 

 

 

And the mom whose story I will share in a moment, shared what all of us feel while raising our child where we must be aware of every moment of every second of every day that their lives are in our hands and watchful eyes.

She said, “The toys others have played with could have traces of something that will harm him. It’s a never-ending circle of paranoia.”

It’s when she said, “It’s a never-ending circle of paranoia…” that I realized that someone else out there understands me.  Where I am.  Who I am raising.

Maxwell Loren.

A child that keeps me paranoid.  But that paranoia keeps him alive.

Many ask if I am going to send Maxwell to preschool.  My answer is clear and plain and make no mistake about it—I will not change my mind.

NO!

I live in a foreign country.  The foreign country does not even know how to deal with my Polish as a Second Language daughter.  They try hard—but initially wanted to label her Special Ed so she could receive services.  I have a BAE in Special Education.  Being a PSL learner and a student in need of Special Education Services are different.  In fact, if she was attending school right now in the States, she would be in a school and program for Gifted.  So, can you imagine our struggle with the school here???!!!

And then—can you imagine my son at the same school?

You know the famous line from My Big Fat Greek Wedding, “He’s vegetarian?  It’s okay.  We’ll serve him the lamb!”

I just imagine the school saying, “What’s that?  He’s allergic to peanuts?  It’s okay—we’ll give him Nutella!”

I’m not being unkind or cruel.  I see it happen all of the time.

“What’s that?  Max is allergic to dairy…Okay, but can he eat the cake?  It only has butter…”

Or

“What’s that?  Max is allergic to peanuts?  It’s okay—these are walnuts.”

Full-blown, never-ending, circle of paranoia.

And that is life with Max.

His name is Max and he has life-threatening food allergies.

And we deal with them because we want Max to live, grow, play, and be with us.

After all, this boy has been hard-fought for since the beginning…we definitely don’t want to lose him now.

***

Click on link for article:  The Day You Died in My Arms

Be aware of prepackaged meats

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Look.  I know you think that I should know all of this by now—and I do.  Yet, I don’t.  And it’s all so stinking hard at times.

My son loves bacon.

I know.  Bacon is not healthy for you (no matter what).  But I have seen the hilarious post on Facebook that says to live a life without bacon is not to live at all.

My son feels this way.

And he eats so stinking little, anyway, that I am actually happy he likes bacon.

Yes, I can cook.

And my husband is a master chef (not really—he is a pastor and founder)…but he is a darn fine cook on the side.

But my son is 3.  He has allergies.  And he likes bacon.

So, we give our child bacon.  Not every day (although sometimes it seems that way 😉 )…but enough.

Problem.  Our store ran out of the normal bacon that they usually have—so I grabbed the smoked bacon.

Now.  Let’s pause a minute and go backwards to yesterday.  Yesterday, my husband returned from Taiwan where he had surgery on his knee.  Upon arrival, he presented the children with their super sweet gifts—

Which included some sweets from the Jelly Belly Store—rock candy!

Now, after the first bite, we deduced that the rock candy was chocolate centered.  So, we went to the official Jelly Belly site to look at the ingredients.  We noticed on the site they had retired their peanut jelly beans to make room for new flavors—

And their jelly beans are all dairy free.

We didn’t find anything about chocolate on the site.

BUT—we went ahead and did the stupid thing, anyway…

We said, “Okay, Maxie.  These are special chocolate rocks.  If they begin to give you owies, let mommy know right away.”

You MORON!  You may say–Yes.  You are more than right.  We are foolishly morons WAY too often, it appears.  Parenting is HARD!

To be fair, we were thinking of all of the chocolate out there that does not have milk, and since we couldn’t find any information on the official Jelly Belly site, we decided, Max can let us know.

BOY—he let us know.

THIS CANDY IS BURNING ME, MOMMY!  THIS CANDY IS BURNING ME!

Sure enough, his face was breaking out in horrible hives, his chest turning red, and he kept trying to get whatever devil off of his tongue.

We ran him to the bathroom and immediately had him brush his teeth and rinse his mouth with water—just to try and get all remnants out.

Then we did the inhaler.  Twice.

Then we ran to the Claritin and gave him 10ml.

Then we got the water rag and cooled his face and chest with it.

Then we made him crushed ice to finally soothe the burn.

It was horrible.  And I felt like simultaneously puking and crying.

I also feel like cussing, but I shall bite my tongue.

In the end, I kicked myself.  I know not to give him food that I am not certain of—but this was a special treat.  A special treat that I did research—but still caved, knowing a lot of chocolate is made with a soy base (like chocolate chips).

This is the failing life of the allergy mom.

I am she.

And it’s okay.  I will fail again.  And again.  And again.  Because there is not a perfect world.

But, next time I fail, it will be on accident—because it’s time I stick to the fact that I MUST KNOW.

I must know what is in it before he ingests it.

I preach this.

And I pretty much live this—like 99.8% of the time.

Seriously.  99.9% of the time, truth be told.

But it is that .01 or .02% of the time when we throw just a small little piece of minute sand into the wind that it smacks us back in the face—stinging our eyes and making us miserable.

That was us.  Yesterday.

Miserable.  Our poor boy…BURNING!  I felt horrible.  As I should have.

We apologized.  We were sorry.  He was forgiving.

The problem is—we were also fortunate…Or, you may say, lucky.

Sucky lucky.

And that brings me back to today.

Today I got out the package of bacon to make him as a part of his breakfast.  He was so excited (and probably pretty starved since he didn’t eat so much yesterday after his burning incident)…

And that’s when my stomach said—read the ingredients carefully just to be safe.

Please also understand—I live in a foreign country.  And, although I understand a huge portion, it is really hard to read in a foreign language—especially food-related vocabulary.

I mean, honestly, do you even understand all of the ingredients in English????

Well, it’s a good thing that I checked the smoked bacon (we do not usually buy any meat with flavoring for the reason I am about to state)…

The bacon was smoked with soy, milk, and pistachio.

Soy—okay.

Milk and pistachio.  Not okay.

Bacon.  Okay.

Smoked bacon—apparently this particular package SO NOT OKAY.

He cried and cried and cried when I told him there would be no bacon for breakfast.

To be honest, I felt his pain.  I cry the same way when someone tells me there is no coffee for breakfast.

Of course, I am being facetious — no coffee for mommy is not the same sadness as just ANOTHER food that Max cannot eat.

When your child is finally excited about something and then that something is stripped away…it’s sad.

It’s just food.  A piece of bacon.  Geesh!  You may be thinking.

No.  It’s not just food.  It’s not just bacon.

It’s his LIFE.

His walking.  Talking.  Breathing.  Burning.  Life or death—Way.Of.Life.

And it’s really hard.

He’s only 3 years old and he already understands HOW OWIE it is.

The other day, an unsuspecting friend offered him a piece of food and he literally shrunk away in fear from her proffering.

So, no.  It’s not just food.

He understands the pain associated with food.  He understands the hurt.

So, it is NEVER just about food.

It is about a child that has to battle every day with very harmful substances in the world that hurt him if he is not the most cautious toddler in the world.

And, therefore, misses eating even his most favorite food.

Which brings me to the fact that sometimes, just sometimes, the best thing I can do for him is just hold him and let him cry.

That.  And DOUBLE CHECK ALL FOODS and never serve him food assuming ever again.

I wish I could write:  The End…

But I know each day it is merely The Beginning of a new day for a new start to a new caution.

So, Allergy Parents, don’t be like me…But also—please hear me.  Double check all food, including bacon, and never give even the slightest sliver of a treat—because it just isn’t worth it.

What other advice might you have for others out there like me—or for me???  We’re all in this together!

Substitutions for holiday baking

When you have an allergy kid, you have to even practice caution in substitutions, but this chart has some great ideas.

Happy future holiday baking for you all!

Xo b

Premature and Food Allergies???

My son was born 8 hours into my 35th week—which in itself is a miracle.  I started having contractions around 17 weeks.  At 22 weeks, I was just praying that I would make 25 weeks.  At 29 weeks, I was receiving medicine to stall contractions.  And, at 34 weeks, I finished my time in the hospital until my water broke and he rushed out.

Okay, kidding.  He did not rush out.

He came out 4 and 1/2 LONG hours later — especially because the epidural I was begging for never came at the Polish hospital where I was delivering my little man.  And that pain and humor all tied into one is best saved for a personal retelling of my story (as I find myself extremely humorous, so you must see my expressions while storytelling :)).

He was not making noise when he was born—and so they slapped the cry into him.  Literally slapped the cry into him.  Just like the good ol’ days (that you hear of) or the movies that you see.

He was not a healthy looking color although they gave him a 10 on the APGAR scale (totally a huge LOL for us).

And within 5 minutes of his birth, he was whisked away from us and put in NICU, in an incubator, on oxygen, and a feeding tube.  He was also immediately started on antibiotics as there was already an infection in his lungs that they called “newborn pneumonia”—that’s the best description we could get from the doctors considering having a baby in a foreign country is REALLY difficult already and then having a baby with complications even more so—and then trying to figure out what “newborn pneumonia” is—impossible.

But our little fighter made it through === and we eventually brought him home.

And then at 5 weeks of age, he nearly died again.  Of, lack of a more respectful way to say it, horrible horrible horrible care of RSV in a premature newborn that already had trouble with his lungs and a hole in his heart that turned into full-blown pneumonia.

For 3 days they did nothing to save our baby—often leaving us alone at night for more than 8 hours at a time.

The night before he entered heaven (don’t worry, we got him back), he was only taking 1-2 breaths a minute.  It was 9pm and the doctor had to shake him to get him to take a breath.  We said, “HE’S NOT BREATHING!”

She looked at us with this horrible ugly air of superiority as if to wrinkle her nose at mere parent mortals and LITERALLY said “It’s sleep apnea—very common in newborns!”  And she walked out.

And I stayed awake ALL night giving my baby a little shake every 5th or 10th second to remind him to breathe.  And he would gasp for breath and then stop breathing all together again.  I did this from 9pm-5am while not a single medical personnel entered our room to check on our dying newborn.

And that’s when he stopped breathing completely.  Because I couldn’t shake my son forever to remind him to breathe.  And his body wasn’t reminding him.  And so the two of us together quit.

And when all of his alarms began to sound not a single healthcare provider responded, I literally ran into the halls screaming, “My son!  My son!  He’s not breathing!”  (except in Polish).

Finally two nurses rushed in and got him breathing again.  Not a single doctor came.

After they got him breathing, they left.  Left.  Left me and a near-dead baby alone.  They didn’t even call a doctor.

My husband and I are now contacting a helicopter to whisk him out of Poland.  We are wondering how fast we can get to Warsaw and storm the Embassy, demanding they get our son out of Poland.  We are crying because we just know our baby is going to die this very day.

And it’s a horrible, horrible feeling.  And it is the darkest you will ever be in your life—watching your child die (my great apologies to those that have lost children, as I know that is far darker…but this was that moment for me, watching him die).

The worst part of it all was that every single medical personnel we had encountered over the last 3 days were horrible and callous and apathetic to the life of our child.  And we were at their mercy, even though they didn’t show mercy.

Even the cleaning lady when I asked for soap in my son’s room so I could wash my hands snapped at me and said, “I just gave you soap YESTERDAY!”

I looked at her with a death stare and said, “I don’t care that you gave me soap YESTERDAY—TODAY I have no soap!”  Needless to say, she very begrudgingly returned with SOAP at my son’s sink so that I could wash my hands to help keep germs away.

Oh friends—there are so many other horror stories that accompany all of this fight.  I will save those for another day.

But then a miracle took place.  One hour after he stopped breathing, a new shift change took place and a doctor that I had not seen for the past 3 days came on shift.

I kid you not, I really thought she was an angel walking and working here on earth—because for the FIRST time in 3 days, someone looked at my baby and didn’t just tell us he was going to die and then walk away—but said, “Your baby is going to die!”  And then she called an ambulance, put us on it, we were whisked to another hospital, and our son was put into a full coma and on a whole lotta machines—after all, he was a lifeless baby at this point.

Our heads were spinning — the doctors told us that we should not give up but we should also not keep hope because no one knew what would become of our baby.

But for at least this one more day, we had our son…

Our little premature child.

And, after many moons of him fighting and about half of his first year of life in and out of hospitals, our little man seemed to be on his way to living…

Finally we could sigh.  Breathe.  Have respite and relief???

No way!

This little booger went and vomited all of his mashed potatoes and welted at the touch to whipped cream on his scalp.  This little stinker from head to toe reacted to a peanut kiss.

This little booger almost had us in the emergency room when we were merely sitting at a steakhouse that just so happened to have peanuts at the tables.

This little life-support NICU preemie baby also seemed to want to rack infant allergies onto his already impressive hospital accolades 😉

And ever since then, I have wondered strongly—do premature births and allergies go hand in hand???

After finally sitting down to become my own GOOGLE MD on the subject (haha!) I found two very interesting reports that came to the conclusions that they don’t.  They don’t have any correlation that has yet been identified in the medical community.

My premature kid and his allergies are separate entities engulfed into one body.

Bummer to find out because it leaves me still at square one:

My NON-AMERICAN born kid is the ONE kid in our family that has the life-threatening allergies to both dairy products and peanuts/tree nuts.

The one kid that was never exposed to American processed food in utero or post utero.  The one that did not even have American immunizations (his first immunizations were in Poland).  His second round was well after we noticed his first allergic reaction to the touch of whipped cream on his skin.

The one out of my three.

How can this be?

And so, I—-like most all of you out there—continue to stand at square one.

Why does my child have so many allergies?  Especially life-threatening ones?

Prematurity and allergies—non check!

In the meantime, I will continue to search and read and learn and wonder and do my darn best to try and keep him safe at home and in the world around him because he’s worth the fight—

And he’s been worth the fight from the start!

His dad and I are aren’t the only ones that think so—

His sisters are sure glad he’s around, too!

max and jo

***

Here are three interesting articles.  Two regarding allergies and premature babies.  One regarding premature babies and increased infant mortality possibilities:

The risk of developing food allergy in premature or low-birth weight babies

Premature Birth and Food Allergies

(Which will link you to:  Journal of Allergy and Clinical Immunology)

And the article in regards to premature births and risks of mortality:  Even Slightly Preterm Babies Face Risks

When your allergy kid can’t eat Cheetos!

Cheetos are not the healthiest—but they are close to the best!!!  And every time my non-allergy oldest buys a bag, I feel tremendous pity for my allergy middle.  He watches his sisters devour my favorite treat.  He knows it will bring him owies—but you can still see the longing in his eyes.

Well, what do you know???  I found a fantastic chip in Poland that is “Ketchup” flavored—but really tastes like the tamer cousin of the Cheeto.  Hurrah!

And the best part—they really are shaped like dinosaurs.  What fun!

So, to all you dairy allergy moms and dads living in Europe—I hope you can find these, too.  

Be careful, though, the ketchup one is the only dairy-free one I have seen.

And for Gluten-Free Mommies and Daddies out there…these are for your kids, too!

Hey—they may not be the healthiest snack around, but they sure are fun.

Smacznego, Kiddos!

  
(These come out of the Slovak Republic, according to distribution.  Brand:  McLloyds)