Tag Archives: life-threatening allergies

An article to make one think…

Here I am … one woman responsible for 3 lives. It sucks the very wind out of me. It is hard enough to be responsible for my life—but compound that with the lives of wee ones is overwhelming.

Then add dangers to their lives and there you have it.

A mommy in paranoia.

If you don’t know Max’s backstory, he never was easy. After 10 years of marriage, my husband and I discovered we were pregnant with our 2nd child. Our rejoicing after years of infertility turned to sorrow as we lost our baby near the end of Trimester 1. Max came 2 years after that—in our 12th year of marriage. Just hours outside of his 34th week.

After spending a couple weeks in the NICU, we brought him home only to deliver him to death through RSV turned pneumonia—blood transfusion, coma, congestive heart failure and a stint of being bagged before our eyes.

Saying we miraculously made it through this is truly saying miraculously we made it through it.

Only to discover his life-threatening allergies.

I kind-of feel as if Max has handed me enough—but he threw this on the barbecue anyway.

And now it is my every breath helicopter mommy moment of my waking day.

Keeping him safe. Alive. And yet letting him live.

This young girl’s death is but another reminder to me that paranoia and triple checking to make sure items are safe IS NOT nuts.

It’s life.

And that’s exactly what I want Max to have.

Here is the article of sorrow.

My heart aches for this family: https://medium.com/@Weresquirrel/progress-or-backlash-the-dilemma-of-allergy-advocacy-8046d658502a

Good News! I am to be published again…

first day of school

Well, I got GREAT news again today.  I have a second article picked up by The Mighty that will be published in the future.  When it is published, they will send me the email with the link, which I will then pass along to you.

In the meantime, my ALLERGY BOY is officially in the 5/6 year old class at our local school, and the school is scared.  I am scared.  Max’s dad is scared.  I think we are ALL scared.  In a small village, Max is the first to arrive carrying EpiPens and life-threatening allergies.  But it has been hashed out: he will only ever consume or touch his food.

This may not seem like a big deal in your country where food allergies are well known, discussed and people are pro-active on the fight-BUT in the country which we reside, it is still a very big unknown, under discussed, and, therefore, very scary for all of us in the game.

Emphasizing how scary this life we walk in this world we walk is, I bring you an absolutely tragic story of a woman that, after being repeatedly assured at a restaurant in Hungary her food was nut free in all ways, suffered anaphylactic shock that has left her in a state of suffering from life-altering brain injuries.

I have already watched my son receive CPR treatment while he was in a full-coma in the ICU.  The nurses kicked us out and bagged our son while waiting for the doctor to arrive.  It is because of their life-saving treatments, he appears okay.  Eventually they were able to intubate him and get a steady flow of oxygen going.

But, the thing is, every single day that I walk my son outside and purchase a food item for him, I risk this exact thing happening.  Because, no matter how many guarantees of safety we are given, my son walks a very unforgiving road.

Fear makes me want to hide him away.  But that is not living.

And so we walk.  Hoping for life.

***

Please click here to watch the video and read the link:

Heartbreaking scenes on This Morning as ex-producer left paralysed by nut allergy is comforted by Ruth Langsford on show

Will this make me die?

nungesser 3

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 😉

The Teal Pumpkins—Be aware!

We live in Poland.  Very few people Trick or Treat.  My daughter hosts an annual party for her class—so that means I control the treats 🙂

BUT—if we were to be in the States, I would be SO GRATEFUL to see these at people’s homes.  I remember the ONE time Max did Trick-or-Treat in the USA.  He was not quite 2 but super allergic to nuts and dairy.  HE WANTED ALL THE CANDY the others were eating but we were all like “KEEP YOUR HANDS OFF OF MAX!”  and fighting through the kids’ bags to find the sugar-based candies (yes, we’re such good parents—ONLY SUGAR, PLEASE 😉 ).

Anyhow—while it was a truly delightful experience—it was also a very paranoid experience.

So TEAL IS GOOD…And, if we ever reside Stateside again, I will make sure that we have a TEAL PUMPKIN out on our porch for all the littles like my Max.

And their moms and dads…

Because I know EXACTLY how they feel!

***

Here’s an article you can read about Teal Pumpkins and Allergy-Kid Safety:  http://mashable.com/2016/10/28/teal-pumpkin-project-2016.amp

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When your allergy kid is allergic to the family pet


Oh man!  When I was pregnant with my son, it was hard enough…he wanted to bring me to an early grave.  And then he was born and tried to go to his early grave…But we made it through ALL of that just to find out he was allergic to life.  Pretty much everything.  INCLUDING the family pets.

Now, perhaps you have not met me in person—so you may not UNDERSTAND the enormity of this situation.

So, let me clarify how serious this diagnosis was…

At first, when we finally went to have him tested at 13 months old, I assumed we would get the diagnosis that he was allergic to cats, much like his dad.  And this was not going to be a big problem for me since we didn’t have any cats.  My husband has a hard time even breathing around cats, so it was likely we would NEVER get a cat.  But my son kept having problems around animals, so we thought, since we were testing him, we would find out for sure.

We told the doctor, “Test him for cats!”

And the doctor said, “And we’ll test him for dogs, too.”

“Um, okay…” we said, not taking this testing serious since no one we knew was allergic to dogs.

BUT THEN THERE WAS MAX…

And sure enough, “You son doesn’t have an allergy to cats, he has an allergy to dogs!”

Okay, to be honest, i heard that he had a peanut allergy and milk allergy and … SAY WHAT????!!!!  A dog allergy?!

This, in my world, is an IMPOSSIBLE allergy to have.

What you need to really hear…like from my heart…is that I had at that moment 2 actual children and 3 other babies—and those babies were my DOGS!

One dog was the same age as my daughter…and, for the longest time, it was only my daughter and that dog (Sierra—a beautiful, gorgeous, lovely, hyper and ever-so-bothersome bumbling GIANT SCHNAUZER).  For 6 and 1/2 years, I had Adelyne and Sierra.  I had no other children but those two.  ONLY those two.  And they were lovely and beautiful…and I know one was my actual baby—but the big dog was my second.  Max came 3rd, you know.

So when I heard the diagnosis that my dog was an allergy for my son, I did not know what to do.

I approached the doctor, “So, um…I have 3 dogs…AND I LOVE THEM AND THEY MUST STAY…What should I do?”

I am sure the doctor has seen many reactions before—including reactions to people finding out that their beloved family pets were causations of allergic reactions, so he seemed unfazed by my panic.

“Listen,” he said, “I can’t tell you to get rid of your dogs.  What I am telling you is that your son is allergic to them.  Now what most people don’t realize is that while many people are allergic to the dander of cats, many are allergic to the saliva and urine of dogs.  So, as long as your son does not have breathing issues or you keep the dogs from licking him, you will probably be okay.”

You have no idea how the relief of knowing that I would be okay (which meant I would probably get to keep my puppies) made me feel.  Super good.

So we left the office with Epi Pen instructions and warnings to stay away from a huge list of milk-related words (that we still can’t pronounce) and every tree nut warning with occasional other things that I just can’t keep up with it all (just kidding—I try hard, it is my son’s life, you know)…and I decided to see if this doctor was spot on in regards to the dog or just a quack 😉

My sister has two dogs:  one hypoallergenic dog and one Boxer.  Max could lay all over them.  No problems.  Hmmm…perhaps the doctor was wrong?!

My mom and dad, one also hypoallergenic puppy, Lick, lick, lick!  Jump all over him.

Welting of eyes and face.  Sneezing.

Okay…Doc was not a quack.  And right.

And so I paid closer attention—how was his breathing?  No problems?  No problems.  Phew!

So, what did we do?

We had to wash his face and hands with soap and water, give him a dose of an allergy medicine to help with the welting/swelling, and then teach my son to not let little adorable puppies lick him all over his face.

THIS IS A HARD THING TO TEACH.

You see—what kid DOESN’T love a dog?  All kids love dogs!  (okay—most).

My son loves his dogs.  He thinks that they are the cat’s meow 😉  Seriously—he thinks they are the best inventions next to potato chips (which, if they are salt only, he can eat).

And, since they do not cause him any breathing problems, we have had to work with our son over the years, since finding out about his allergy, that he can love dogs…he can love on dogs…but he needs to not let them lick him.  He needs to not rub his eyes after touching them.  And he needs to no let them sit on him/or his chair.

On top of all of that, we have had to leave our dogs mostly outside, and we also, when they are inside, have taught them that they have a corner.  It’s not an option…It’s a must.

When I notice him rubbing his eyes slightly more than normal or sneezing a bit out of the ordinary, I realize the dogs have snuck out of their corner and into his realm of the world.  Where I then have to vacuum and clean his chair (where he sits in the living room) and admonish the pups to their corners again.

Okay, just kidding…they don’t get admonished—but they are retrained to stay out/off of the living room furniture and carpet.

It’s hard to take man’s best friend away from man—but, when you are allergic to said best friend, you do have to find ways to keep that best friend AND your child healthy at the same time.

It is possible—as long as there are not breathing problems that go along with it—to do.

And, so, we get to keep our pets — even with our Allergy Kid Max!

Max looking through my wedding pictures stumbles upon our cake…

“Mommy!  Look what Daddy is feeding you?”

“Yes, Maxie…Cake.”

“Owie cake, Mommy?”

You see, in the allergy-world of life-threatening allergies, every food item becomes a life-or-death situation to our Max.  Because that is how life is.  Life or Death depending on what he puts in his mouth.

And you should have seen his reaction when I answered him, “No, Maxie…That was not owie cake.  Maxie could eat that cake.”

His hands went up in the air and he yelled, “Wahoo!  Cake for Me!”

I know Max will never take a bite of my wedding cake—we’re 15 years past that.  But what I saw was joy in my son’s eyes that for once, one delicious moment, my son could eat something special that the rest of us were eating, too.

It brought me the normal Max-conundrum of joy and sorrow.

But mostly joy.

Like his smile!

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