Soap is Bad for You, and my daughter has chapped lips.

IMG_1299

Yes, that’s right.  S.O.A.P.

And, of course, I am being facetious.  But I’m not.

Here, let me explain.

My son is allergic to milk and all like ingredients.  And he is allergic to peanuts.  And he is allergic to nuts.  And dogs.

But dogs don’t have anything to do with this, do they?

Well, not this post, anyway (but I will get to ingredients that could be found in dog foods in another post).

On top of it all, my son has severe breathing difficulties—and is currently treated like an asthmatic child.

This soap thing—it may appear funny sounding but it is really real.

We realized very early on that Maxwell was allergic to the touch as well as the ingestion of milk.  He welted or vomited by the touch of it or the ingestion of it.

And while I thought being allergic to milk was possibly the worst fate any person could suffer because butter is heavenly.  Milk divine.  Ice cream is a slice of serenity—I had to change his lifestyle and he lives just fine without it. (GASP from my heart)

While changing his eating ways, I came to this crazy realization that milk is not just in food.  It’s in EVERYTHING!  And that especially hit me when I was changing his diaper one day…

I had been given this awesome and super natural diaper cream for my son.  So awesome, right?

Well, the day that I used it, the next time I went to change his diaper, his boy bottom and entire area was swollen like crazy swollen and red.

And I thought, “Holy cow!  What happened here?  What did he eat?  What did I touch?  What did I use?”

That’s when it dawned on me, I used this super expensive and fancy and healthy diaper cream…that contained items that caused him great pain.

And, from there, I had to begin to look at all items differently.

Including soap.  Because, if you pause to think about it, many soaps even include milk.

But that’s not all—my daughter, she has EXTREMELY chapped lips.

It doesn’t help that she licks them, too.

So, if you can imagine, she needs a balm for them all of the time.

Not thinking, once, I went and grabbed her a relatively known and good brand lip balm.  When I came home with it, my husband said, “Um…this one has milk in it!”

Sure enough, one of the first ingredients was milk.

Milk on her lips!

Makes sense in the beauty world—but not in my allergy world.

And so I had to tell her if she EVER EVER uses it, to NOT kiss her brother.

She has given up that lip balm as her brother is too cute and kissable.  I get it.

With these lessons, I have learned that raising a life-threatening food allergy kid extends outside of the food arena.  It extends into all arenas—

Including soap.

And chapstick.

And diaper cream.

And dog food…but we’ll get to that another time.

So, Allergy Mom and Allergy Dad, be dutiful in the supermarket and the cosmetic department, your child’s well being is at risk in both!

Keep your hand out of the cookie jar, your finger out of your nose, and don’t double dip. 5 Mores TIPS for Keeping Your Allergy Kid Safe!

adamaxjosieeaster

Keep your hand out the cookie jar, your finger out of your nose, and don’t double dip:

5 More Tips for Keeping Your Allergy Kid Safe!

Okay, obviously the finger out of the nose is for pretty much everyone.  So let’s chalk that one up to common knowledge and all around good sanitation.  But the following 5 tips are especially important if you have a child with severe or life-threatening allergies where mere contamination by touch causes very severe reactions.

I have a kid like this, and so we also LIVE these at our home (and I was reminded of them by some great friends on the other side of the world).

Before I share the tips, however, I do want you to know that I am raising two littles and one big.  Maxwell (2 years), my allergy kid, is sandwiched between Adelyne (9 years of age), and Josephine (15 months of age).  Therefore, I especially emphasize these with my oldest daughter as she has understanding.  As for my last little, Josephine, I raise her the same as I raise Maxwell, with rare occasions where she gets yogurt or ice cream of her own (the owie kind—that’s how we explain it to Max).  I find this a lot easier since they pretty much live and breathe the other.

So, while my Allergy Tips will apply to all, I have found it easiest to raise my two littles as equals.  And Josephine doesn’t know differently, so life is still one big party all around!

Tip 1: 

Keep your hand out of the bag of chips and DON’T double dip!  

My friend reminded me of this brilliant tip that we do live at our home.  Pour the bagged item onto your plate without having your hand reach into it (pretzels, popcorn, chips, the like) and pass it right along.

This may sound silly, but when you have a kid like mine who even reacts severely to contact with what bothers him, this is actually BRILLIANTLY sound advice.  It keeps the items inside of the bag clean while allowing the shared item to be shared again.  Once a foreign hand enters the bag, I have to tell my son that he cannot have any because they are owie.

After all, I don’t know if the foreign hand just had cheese chips or peanuts before reaching inside, therefore, the rule stands firm and sticks.

Tip 2:

Always check ingredients—even in your most trusted store-bought items.

I was reminded of this by another friend, and she is VERY right.  It’s something I do every time, but sometimes we forget to remember what we always do because it becomes the ordinary.

But it was a very good reminder for me to share and this is why—companies are constantly changing their items and ingredients. Therefore, just because on Monday it was safe does not mean on Tuesday it is the same.

Which means—check and double check!  Just like your test answers at school before you turn it in to the teacher.

That was wise advice when we were in school—and its wisdom rings JUST AS TRUE as we live this allergy life with our kid!

Tip 3:

Use a separate knife, cutting board, and watch out for the sneaky sponge!

We use so many knives and forks and cutting boards it’s crazy!  But it’s safe.  And I have seen so many fewer reactions on my little man’s face since we started living this that it is just plain worth it.

Don’t you recall that horrendous ant bite or mosquito bite that just wouldn’t quit!  I mean.   It was so painful and irritating that you just couldn’t stop thinking about it.  It consumed your mind.  You couldn’t stop itching it.  Well, that bite is how my son reacts when he comes into contact with milk.

And it makes him have trouble breathing.  And he welts.  And it irritates him.

This is just from contact/contamination.  This is not from eating the item.

So, if you can reflect upon that horrible bug bite, you will understand WHY we live this tip.  It takes more counter space, more dishwasher space, and requires more effort—but it’s worth it.

As for that sneaky sponge, let me share—perhaps you use a dishcloth.  Perhaps a sponge.  If you use either, it is a shared item.  Which means, if you go and clean a milk spill with the same cloth that you clean another area, you will most likely have a reaction from your child.

My little man constantly was breaking out all over his face and I couldn’t figure out why.  I mean, we religiously either only give him food we make or food we have read ingredients of 50 million times.  So what could the culprit be?

It was then that it hit me—the sneaky sponge (dishcloth—we use them both).

And ever since we came to this realization (and bought our little man’s cups his own scrubber) and make sure if we clean milk with the dishcloth a new one comes out (new does not mean brand new—it means laundered)…Ever since we adjusted all of this, his face has been far far far far less irritated.

I have to say far far far far less—because—as in life—sometimes we make mistakes and he suffers the consequences for our foggy minds of remembering.

But, overall, we do a good job—and our son thanks us for it!

Tip 4:

Another friend reminded me of this—which we also live under our roof.

Make and bake and freeze—oh my!

You will find yourself making a lot more food than you ever imagined.  After all, we live a great world of freezer-worthy items.  But what WE never noticed before was how many ingredients are actually in all of that glorious stuff called food.  One million.  And that means you have a LONG list to read through before you know if it’s safe or not.

In the end, even after all of that reading where you have now become a PhD student in the terminology, the package still ends with:  May contain…

It also ends with:  Could be processed in a plant with…

And you sigh.  Do you risk it?  Do you buy it?  How will your child react?

I feel you, allergy mom.  I feel you.

And so I say this—the Internet is FULL of brilliant and VERY tasty recipes JUST FOR YOU!

But I do also know how time consuming it is to make this food—believe me.  I have three kids, live in a foreign country, am a pastor’s wife, and work full time for our foundation that helps rescue the forgotten.

I know—and so I feel your sigh.

BUT—and this is where the last little shred of your strength should be renewed.

BUT—we live in this magical world of electricity (if you are reading this via the internet, I know you have it, too!).  And with electricity comes beautiful inventions such as freezers.

We have a rather worldly large fridge.  I say worldly large because in Poland (where we live), our fridge is enormous.  In the States, it’s normal.

And this enormous fridge has been one of the best investments in our lives.  Especially now that we have an allergy kid.

So, this is what we do…

We make his waffles from scratch (brilliantly delicious Belgian-style waffles).  And we serve them immediately (because they are divine hot all smothered with good stuff), freezing the rest.  They are just as divine the next day.

How do you warm them?  Pop the waffle in your toaster and voile!  It’s as if you just made it.

We do this with so much of his food.

And my friend suggested also keeping premade cupcakes in the freezer, that way when it’s party time somewhere else, you have your kid’s cupcake all raring to go!

Friends—we live in this world of electricity.  Use it.  Abuse it.  And freeze it!  (okay—don’t really abuse it—it just flowed).

The longer you begin to live this allergy life, the easier it eventually becomes.  It’s just hard to start.  Believe me.  I know!

Tip 5 and Don’t Ever Forget It:

There is one thing that we constantly worry about as an allergy parent—it’s being that ANNOYING ALLERGY PARENT!

But I am here today to tell you this is the most important Tip of the Day:  BE THAT ANNOYING ALLERGY PARENT (Respectfully, of course)

I get it.  I am living it.  And I am that parent as much as it drives me insane to be it.

But there is something that we perhaps don’t do as that annoying allergy parent—it’s tell others that, perhaps, they can, you know, keep the peanuts away from your son…

You see, we took an airline trip from Poland to Norway to visit family.  On the flight, you purchase items.  And one of the items you can purchase is peanuts.

I hadn’t thought about it before the flight—and when on the flight and people begin purchasing items, I didn’t think much of it UNTIL my son’s face turned bright red and his eyes wide.  He looked at me and didn’t say a word.

That’s when I looked at my husband and my husband said, “I smell it!  Peanuts!”

I rushed my son to the bathroom, hoping to lock him out of the general assembly area and began giving him his rescue inhaler and allergy medicines.  I washed his face and began asking him questions.  I told the stewardess and told her to keep medical alert on HIGH ALERT, and she immediately had everyone put their peanut snacks away.

I got out my son’s epi-pens and panicked.

Do I use them?  Do I not.

I know the answer you hear everyone say—GIVE IT!

But when you are there you really begin to wonder.

My son did not ingest the item.  We were not in that close of proximity to it.  And he did not touch the item.

I prayed and sat with him in the bathroom washing his face and talking with him—hoping the bathroom ventilation would be different from the regular galley’s—and we spent the remainder of the flight in the bathroom stall (until it was time to land), as he returned to normal coloring and happy smiling.

After we got out, we got yelled at by the stewardess.  And we deserved every second of the lecture.  “TELL US IMMEDIATELY AT THE START OF THE FLIGHT THAT YOUR SON HAS ALLERGIES!”

Yes.  She was right.

Yes.  Our son was safe.

But, no, no, no, no, no…we would NEVER EVER do that again.

We will not fail to be the ONE REASON that you and I can’t eat those divine peanuts on the plane anymore.

I LOVE THOSE PEANUTS.  I am sure you do, too.

But we will be THOSE people.  The ones that keep you from snacking on them at the airlines.

We should have been THOSE people to begin—and our son suffered the consequences because we were not.

But we will never do that again.

Yes, Allergy Mom and Dad, you will be the annoying parent that keeps people like me (even though I am also you) from enjoying peanuts on the airlines—and other such stuff—but take it from a mom that lived it…

It’s not worth the scare to NOT speak up.

So as I walk this path as allergy mom, I am learning bit by bit how to speak up and scare people.

My son’s life depends on it.

Therefore, my final Tip 5 for the day, “BE THE ANNOYING ALLERGY PARENT (Respectfully, of course)” needs to be truly felt.  Truly heard.  And truly lived.

Your kid’s life depends on that.

Your kid’s life depends on you.

Now, what else can you share with me as we walk this road together?

I will let Nancy Grace Speak for me…

Yeehaw Maxwell!

Today I think that I have cried a few too many tears.  It’s not just because my husband and daughter are far, far away where there is sun while I am in a home heated by coal.

Yes.  I said coal.  And a wood stove.  Yes.  I just said heated by coal and wood.

And there is no sun.

Did I point that out yet?

You should also know that I am cold because I am NOT that great of a pioneer woman.

And the coal at this moment only heats the hot water.

Therefore, I am bundled up, while my kids are stuck in their upstairs bedrooms, in their cribs, visiting with one another while mommy drinks her coffee and writes this blog.

But it’s okay because I will chalk it up to mental health for mommy time.

You know you do it, too.  Don’t judge!

Also, they share a room.  So, technically, they are actually just “playing” upstairs—even though they are separated by two separated but caged cells.

I love caged cells.

In any case, as I sat around this morning WAY too early awake (thank you trash collectors and our 3 large dogs for alerting me of them), I have been reading the news and weeping at half of it.

One.  Probably because I miss my missing family.

Two.  Because the job that I have as an allergy mommy is SUCH A BIG ONE!

But don’t take my word for it.  Take the word of Nancy Grace.  On her HLN page she shares 7 tragic deaths of mostly teenagers (and 1 smaller child) to allergy-related deaths.

And asthmatic (probably).

My son is both.

Allergy and asthmatic.

Death is a word that hinges on my mind every second of the day as I walk him through life.  And seeing the fact that these photos highlight teenagers makes me EVEN MORE AWARE that while I can police him now—perhaps it is when he is MUCH, MUCH older that I should be very, very afraid.

And then I read another article shared by a friend.  It is me.  Me trying to figure out when my two year old tells me that something is wrong.  But this article was written by a woman whose son is 6.  So much more communicable.  Yet no less scary.  It was written because he picked up trash.  Trash.

My allergy-parent friends…This thing that we live is not all in our imaginations.  It is our reality.  And it is scary.

But we can do it.

You can do it.

I can do it.

Your kid can do it.

My kid can do it.

It just takes 24/7 for the rest of my/your/his/her lives to do it.

The end.

(I would say enjoy the articles—but, instead, today I will simply say PLEASE READ!)

Nancy Grace highlights 7 children that have died from allergy/allergy-related causes:

http://www.hlntv.com/slideshow/2015/04/07/children-bizarre-allergy-deaths

Anne Radcliffe writes:  A terrifying day in the life of an allergy mom:

http://www.huffingtonpost.com/anne-radcliffe/a-terrifying-day-in-the-life-of-an-allergy-mom_b_6841378.html

10 Must Tips for All Allergy Parents

10599703_502894559845180_8216687839488089330_n

Here are our TEN TIPS FOR ALL ALLERGY PARENTS:

1. There is NO 5-second fall on the floor rule. EVER.  With your allergy kid. NEVER EVER!  You never know what fell on the floor before your child’s food.   Always better safe than sorry.  We live this.

2. Always have cookies or other treats with you that your child can have in case there are sweets being distributed—that way your child will NEVER feel left out. (Find out what cookies or candies they can have—or make a bunch and keep them handy)

3. Always have food when you go to a restaurant or a friend’s house. Do not rely on your friend’s word that “there is no…” in the food. Your friend may not really know nor have a good understanding of the consequences.

4. If you do go to a restaurant, ask what oil they cook in.  Ask for an allergy menu.  Study it carefully.  Talk to the manager.  Do absolutely anything you need to protect your child the best you can.  You need to know everything.  (In the end, it’s still a risk)

5. Always wipe down the table where you sit.

6. Always wipe down the grocery cart that you touch.

7. ALWAYS ask the ice cream counter to WASH the scoop with hot water and soap before you get your child the sorbet. ALWAYS. They will be inconvenienced and roll their eyes—you stick to it and MAKE them clean it well.

8. NEVER EVER EVER leave your home without ANY of your medicines. Your allergy medicine. Your inhaler. Your auto injector. IF you leave your home without them—YOU TURN AROUND FOR THEM. The world will wait. It will. I guarantee it.

9. TRUST your child when he/she says that the food you gave—even though you read the label 50 times —is OWIE! Always trust your child’s instincts. Kids like to eat. Your child is most likely telling you the truth and NOT trying to get out of eating something.

10. Once you find a brand or an item that your child can safely eat—don’t try and find other items at better costs. The only thing better than finding an actual store-bought item that is safe for your child is making it 100,000,000% from scratch yourself. If money is really difficult, then make the food at home. Time consuming? YES!  Most cost effective?  YES!  Worth it? YES!

How about you? What tips do you have for me?

Life-threatening Allergy Parent—You must teach your child to live this phrase.

He knows how to really wear his cape!

My stomach tightens into one million knots every time my son leaves my field of vision. And this is not an exaggeration.

Unless, perhaps, he is at home with his babysitter—because I know my home is a VERY controlled environment.

Or if he is with his daddy somewhere—because his daddy loves him as much as I do.

But — and this RARELY happens  (church is one of the only other exceptions)— if my son is not in my physical presence and is somewhere else in the world, I nearly lose my mind.

I know that the Bible says, “Be still and know that I am God…”

I know that the Bible says, “Fear not, for the Lord your God is with you…”

But the Bible also says, “Be wise and discerning…”

And these are the words that I, life-threatening allergy mom, live by.

BE WISE AND DISCERNING!

The problem lies, however, in the fact that I will not keep my son in a bubble.

He does not currently live in a bubble. Therefore, we have life-saving medicine with us everywhere we go—and, far too often, we see him have an allergic reaction to something that we JUST CAN’T PUT OUR FINGER ON.

A wise mom once told me, “You can keep your son hidden or teach him how to live.”

Mind you, this is when my son barely escaped death and woke up from his coma and was escaping the ICU where they were holding his body hostage—for good reasons—to keep his heart from failing and his lungs living.

So, you can imagine that I wanted my son to live in a bubble. But that is not the way God intended man to be.

He designed us to be interactive. To see the world. To enjoy his creation. And to live life to the fullest.

And because we DO want our son to enjoy life and live, we, my husband, Richard, and I, Brooke, have adhered to one VERY strict rule with our son to keep him as safe as possible.

It is this:
JUST SAY NO!

You see, we first discovered our son had extremely severe allergies around 7 months of age. Severe.

Head welting. Throwing up.

Not long after—body swollen and welted. Not sure what the insides were doing.

And, of course, more times than I can recall, welting, breathing problems, and, well, you name it===he’s lived it.

We HAD to get this reaction thing under control—And this is how we did it:
As soon as my son was cognizant enough, we started telling him, “Maxwell, this is OWIE!!! No touch!”

And we would ask him, “Is this owie?”

And he would respond, “Owie, no touch!”

It’s not that we want him to fear the world, but he does need to know that in the world lurks great danger.

Yes. We scare him about it too.

It’s okay, Allergy Parent, for you to scare your kid. Because scaring them is caring. And caring by scaring is keeping your child as safe as you possibly can.

We all remember the tragedy of the young teenage girl that accidentally took a bite of a peanut butter Rice Krispie cookie before spitting it out—-medicines, 3 auto injections, and air lifting her out of her location later—-she still tragically passed away.

I say this so that you understand—-YOUR CHILD KNOWS as soon as the food touches his/her lips and tongue that it HURTS. The food hurts.

BUT your child does not ALWAYS know, by seeing the food, that it kills.

The Bible also says, “Appearances are deceptive but God sees the heart…”

My friend, food is the same.

By appearance, it may appear safe and not harmful at all—-but what is in it that could kill?

Do you know?

Does your child know?

How can you tell?

More often than not, you can’t.

Therefore, it is mandatory as an ALLERGY PARENT to teach your child to “Just Say No!”

Mandatory.

There is no question about it.

My little toddler of a son has been offered food by sweet kids ever since he could waddle around, but we have instilled enough life-saving fear in him to not even TOUCH the food offered to him.

Not.Even.Touch.

You see, he reacts as well to contact on his skin.

Bad.

Therefore, he HAS to be vigilant at all times.

And by teaching him to “JUST SAY NO” he won’t touch the item proffered by sweet children.

The children offering, they don’t understand, but it’s okay—-one day they will. If I am close, I simply say, “Oh, that is so sweet but it gives Max BIG owies! Thank you, though.”

Because it is kind.

But this sort of kindness can also kill.

And so, my allergy-rearing parent and friend for life, be adamant and insistent. Teach your child from the moment they begin to waddle away from your legs that there is only ONE answer when they are offered food—-

That answer is NO!

It may just be the one word to save your child’s life.

Easter with an allergy kid. How does this work?

Already covered in candy smiles!
Already covered in candy smiles!

Dear Parents and Friends of Allergy Kids…

The holidays are TOUGH! Capital T through H TOUGH!

Thankfully the big EB (Easter Bunny) knows the kind of candy and cookies and snacks my little allergy man can eat, so his Easter basket was S-A-F-E.

But the Easter egg hunts are much harder! Especially when you don’t live in America and have plastic eggs everywhere at easy disposal. Which I don’t.

So this is what I did—and it was a great success.

Before the egg hunt I told my boy (he’s two turning 3 in May)…

“Max, we are going to go hunt eggs. It will be fun.”

“Fun. Right, Mom!”

“But the eggs are owie, Maxie. So you CAN’T eat them, okay?!”

“Okay, Momma.”

“Remember, Max. The eggs are owie. So you can’t eat them.”

“Owie eggs. Okay, Momma.”

And I stayed with him through the hunt.

Which is hard when you have two littles that both need help and your husband is out of country. That’s where great friends come in and help you out.

My littlest, Josephine, was taken on her hunt by a friend while I followed Max around.

He had SO much fun collecting the eggs.

the egg hunt
The hunt!

And then—after the hunt—came the super hard part. THE DISTRIBUTION.

So, I kept reminding Max that since the eggs were owie, he was going to share his eggs—BUT after he shared his eggs with everyone, then he was going to get a super big treat!

He was so excited. He walked around the entire crowd and gave each person one chocolate egg. After he finished passing them all out, I gave him a BIG bag of jelly candies! (I know—just what he needs—sugar 😉 ).

He was so happy. He sat right down and began to eat them.

This year it wasn’t so hard. Again—he’s turning three in the next month. But I do know that as he gets older he may have more longing for the chocolate everyone else is eating. But, it’s funny, even though he’s little—he already knows how badly the food hurts him when he eats it.

So perhaps it won’t be as hard as I already imagine it to be?

Time will tell.

In the meantime, the Easter egg hunt was tremendous fun! Even though he didn’t get to eat a single one.

What about you? How do you do Easter when there is only one in your family that has allergies? Do you eliminate all of the allergy foods or have specially marked eggs? Or do you let the children simply have fun but make sure to separate very carefully in the end?

This allergy thing—it’s a lot of work.

But I know that your child is worth all of the extra work—just like my Max!

God bless,
Brooke

Keep Calm and Allergy On!

%d bloggers like this: