Sam's Allergy Update: Darn the Egg

When Sam was 5 months old, he got hives when milk splashed on him. This led to allergy testing, which resulted in a diagnosis of milk, egg and peanut allergies. 

It was devastating and life changing for us.  

We had to clean out our kitchen and change the way we ate.

Thankfully he outgrew the milk allergy really fast, 

and a couple years ago outgrew the peanut allergy!  

The egg allergy has held on strong.  It's often outgrown by his age.  

It's a really hard thing to be allergic to. He can't have anything with egg in it, including:

pancakes, waffles

muffins

cupcakes, cakes

cookies

donuts

some breads, some ice creams

lots of pastas,

etc.

Which makes grocery shopping, cooking, eating out, eating at school, 

birthday parties, etc. really hard on all of us.

The benefit of the allergy, though, is that we all eat a lot healthier because of it.

Our number one goal is to keep him safe.

Our number 2 priority is for him to be included as much as possible.

What 6 year old kid wants to miss out on a yummy treat when everyone else is eating it?

So we do everything we can  to include him, do lots of egg-free baking here, 

help plan the food for class parties, plan ahead as much as possible, 

avoid situations where we know he'll be left out (pot luck dinners are a nightmare), etc.

Still, there are many occasions that he is left out and upset.

Which sucks.

When he was re-tested this summer, his egg numbers had gone down slightly.

Our wonderful allergist who has kept him safe all these years then retired.  

We now have a new allergist that we met this fall who we also really like.

(Upon meeting her, we also learned that he is also allergic to dogs, dust mites, trees, etc.

He was also officially diagnosed with ASTHMA, which also sucks).

Our new allergist agreed that based on his numbers we could come back to try an egg food challenge.

We went yesterday with high hopes that maybe he could tolerate food with egg baked in it.  

I don't care if he ever eats straight egg, but oh if he could eat egg in food, it would change our lives!

I had to make a batch of 24 cookies that contained ONE egg.

We brought one cookie with us 

and our goal today was to see if he could tolerate HALF of the cookie.

They checked him over really well first: oxygen level, blood pressure, heart & breathing, skin check.

Then he had a tiny crumb of the cookie we brought. We waited 15 minutes, watched him carefully, rechecked his vitals and he was fine. So he got another crumb that was double the size of the first.

Watch. Wait. Check vitals.

Double the size of the cookie serving.

Repeat every 15 minutes.

He did AWESOME at first.

You have to understand, this was a HUGE deal for him. 

All we do is drill into his brain to never eat food containing eggs. 

To always ask about ingredients.

That eggs will make you sick.

Now we're telling him to eat some on purpose!

He was nervous but excited.

He did AWESOME at first.

He played the tablet while we waited and 

patiently answered us every time we said 

"Sam, you feeling okay buddy?", which was A LOT!

He made it up to a teaspoon of a piece of cookie.

Then 2 teaspoons. We were getting close to finishing off the half a cookie.

I was getting so hopeful that he might be okay.

The plan if he didn't have a reaction was for him to have a half a cookie with 1/24th of an egg in it every day for several weeks at home, then increase the amount until we would hopefully eventually get to the point that he would be okay to eat foods containing eggs.

But when he ate the 2 teaspoon size of cookie, things changed. 

He curled up in a ball and said his stomach hurt.

He told me to get the nurse for help.

He begged me not to feed him anymore.

In the past, he has accidentally had a bite of food that contained egg a couple times, 

which resulted in severe stomach cramps, vomiting and diarrhea.

And yet again, a tiny amount of egg made my baby sick.

He was miserable. 

The nurse checked him over and his blood pressure was up and he was obviously in so much pain.

 He wouldn't uncurl from a fetal position.

The doctor came in and confirmed it was time to stop the challenge.

Thank the LORD he didn't have any respiratory problems or any other type of reaction.

They gave him Benadryl and monitored him for another hour to make sure he was okay. His blood pressure did go back to normal after a while and they cleared us to go home, 

after a very long 4 hour appointment.

He couldn't even walk he was hurting so much, so I carried my sweet baby all the way to the car.

He ended up eating less than half of a cookie that had 1/24th of an egg in it. 

A minuscule amount of egg and it made him miserable.

I hate to see what a small amount of egg does to him, 

and I'm scared for what a large amount of egg could do.

I hate that for now we have to continue being super vigilant, super careful.  

Checking every ingredient of every food that goes past his lips.

Epi pen every where we go.

Knowing he's going to miss out and be left out no matter how hard we try.

But at least we know where we stand for now.

His allergist is hopeful that someday he could still outgrow it; most kids do.

So it was a hard day and we are definitely bummed.

But as I carried him through the hospital on our way to the car, 

I saw children at the hospital who have it much worse than my son. 

I saw parents who were sitting alone crying without their children.

We know how to handle this allergy.

We are educated.

We have fantastic doctors helping us

and supportive friends & family who help us.

I left with my boy in my arms feeling disappointed 

but also knowing that this is all working to make him be such 

a strong, brave and resilient young man.

Skin test over the summer.

Last appointment with our original allergist.

We've spent hours at the allergist. He is more patient than I am!

YESTERDAY:

Inspecting the first crumb.

 Feeling "crumby" a couple hours later.  Darn that egg.