Feeding Monster Mac

Makaiah's Oral Immunotherapy Journey Fighting Food Allergies



This big ol’ smile is Makaiah, Mac, Mackie Boy, Makaiah Papaya, MacNut, Kuya... He is our sweetheart, tender soul, giggly, dinosaur loving, play food master chef, train track building, ticklish, chocolate inhaling, can't-keep-slippers-on, potato chip crunching, Hawaiian-born rascal.

He is also our food allergy monster.

Makaiah’s Story:
Up until Makaiah was one, he had only eaten fruits, vegetables, and foods I had made with simple, fresh ingredients- all vegan. We had planned to slowly introduce dairy and other foods into his diet when he turned one, just to slowly ease him into a broader diet.

I remember it was a hot day and Makaiah was in his diaper, sitting in his chair eating, and his big sister was next to him with a bowl of mac and cheese. Somehow Makaiah got his pudgy little hands into her bowl. I remember thinking ‘what a cute moment between big sister and little brother and lots of messy food, I should take a picture of them’.

Makaiah didn’t eat the mac-and-cheese, but he did get it all over himself. Before I could get my phone out I could see that he was having an immediate reaction where you could see the path his little hands had taken all over his body. He had big, red, angry hives everywhere he had touched himself. What in the world?

We brought the little guy in to have his blood tested and when the results came in, received the call to go to the pharmacy immediately to get Makaiah some EpiPens. He was no longer allowed to go anywhere without his emergency stash of EpiPens and antihistamines.


The Allergy Life

Since then, Makaiah has grown out of several food allergies, but the ones he kept have gotten worse. He also developed additional environmental allergies, which in the last year has led to several asthma attacks.

Makaiah is severely, anaphylactically allergic to:
    · Peanuts
    · Dairy
    · Eggs
    · Cashew
    · Pistachios

He is also severely allergic to:
    · Dog Dander and Saliva
     (you can see the hive path on his skin when he gets licked by a dog)
    · Cats
    · Dust

Makaiah turned 4 at the end of January this year and already he has had to be Epi’d 4 times, with 4 ER visits.
     · The first, he was accidentally given cow’s milk instead of coconut milk (they were both in similar red
       cartons).
     · Another, his sandwich got the real mayo and not his mayo.
     · And twice we have no idea what he touched (because we were watching pretty closely at both
       parties and he didn’t eat anything we didn’t give him). But poor Makaiah had pretty big reactions
       that needed the Epi.

       For one of those unknown reactions, he became unresponsive (even after the epi) on our way to the
       ER that was 5 minutes away from our home.

       I remember Neal and I both frantically yelling Makaiah’s name, just trying to get him to say
       something, anything. I remember reaching back, trying to shake him and poke at him, all the while
       praying that he’d move or stir. I remember the feeling of being terrified to my core, not knowing
       what was going to happen and how we would get through this.

       Thank God it ended well, and we were able to go home that night. But I remember thinking, this
       wasn’t the first or the last time we’d go through this, no matter how careful we are, and feeling
       overwhelming sad for my boy.


Oral Immunotherapy [OIT]
When we moved to California last year we had to find a new allergist for Mac. His new levels were so high, the allergy specialist wasn’t comfortable treating or monitoring his levels and referred us to a food allergy specialist.

There we learned he was a great candidate for OIT for multiple food allergies.

Right now, Makaiah’s body HATES dairy, eggs, peanuts, cashews, and pistachios. They are the enemy. When Makaiah touches or ingests any of these foods his body gets mad and creates little soldiers (IgE) to fight and get rid of the food(s); in Makaiah’s case that fight is an anaphylactic reaction.

OIT would slowly teach Makaiah’s body to recognize and see his food allergens as friends, just like all the other food he eats and isn’t allergic to. (When I say slowly teach… I mean slowly give Makaiah the foods he is allergic to…. Scary, right?!)

Over time, Makaiah’s body will begin to recognize his food allergens as friends and stop making soldiers [IgE] to fight them. After the treatment is done, Makaiah will continue to have to eat a predetermined amount of each of those foods to keep reminding his body that those foods are friends and not the bad guys.

The treatment will take about 9 months to get to the point of cross-contamination safety which means he can eat foods processed or cooked in the same factory as his allergens, go to ballgames with peanut residue scattered all around, and still eat his food if a piece of cheese or peanut falls in it.

To get Makaiah to free-eat (where he can eat whatever he wants, whenever he wants, like most kiddos his age) it will take an additional 18 months.

 
Immunotherapy [Allergy Shots]
With OIT, Makaiah will need to simultaneously be treated for his environmental allergies with immunotherapy- allergy shots. He will need to go in to his allergist to get a shot 2-3 times a week for up to 9 months. At that point, his body will hopefully have begun to recognize cats, dogs, and dust as friends and the doctor can begin to, very slowly, taper the number of shots down until he is down to 1 shot per a month.

The immunotherapy will take approximately 5 years from start to finish at which point he will (hopefully) no longer need the allergy shots.

It’s very important that Makaiah is treated for his environmental allergies because they have been triggering asthma attacks and allergic reactions. If Mac has an asthma attack or allergic reaction to one of his environmental allergies it could very well cause him to have an anaphylactic reaction to his OIT treatment.

 
Cost
Immunotherapy is partially covered by our insurance, which is a relief.

However Oral Immunotherapy is NOT covered by our insurance. To a degree, they may cover some of the treatments that double as “regular” allergy treatments, but a big portion of OIT isn’t covered.

Our estimated out-of pocket costs to get Makaiah to cross-contamination safety will be approximately $15,000 out of pocket, and to get him to free-eat it will cost an additional estimated amount of $18,000. These estimates are only if EVERYTHING goes smoothly, exactly as planned, and there are no complications or problems.

The exact total will depend on how well Makaiah tolerates the treatment. If he has any reactions or bumps in the road it would mean additional visits or an even slower treatment plan which would increase the cost significantly.

These estimates don’t include immunotherapy copays, or any of the traveling we will be doing for the 2-3 immunotherapy treatments a week as well as the 4Hr+ round trip every other week to the OIT clinic for up-dosing (increasing the amount of food allergens he is taking with each dose).

I know… those numbers… I’m still having a hard time wrapping my head around these costs.

 
Our Hope
Just the other day I volunteered at a Kindergarten round-up for families to see and experience a school day-in the life of a Kindergartener and Makaiah came along. At snack time there was a cute snack pack, made especially for the kiddos and it included goldfish and pretzels. Neither of which Makaiah could have.

The kiddos went outside to eat and squeezed together at one picnic table. I quietly explained to Makaiah that it wasn’t safe for him and walked him to the next closest picnic table which was on the other side of the classroom building. Seeing him there, safe yet alone was just heart wrenching… especially when he kept standing up to peer around the building to see the kiddos at the other table.

It didn’t stop there… after snack time it was play time. All those little kiddos had just eaten goldfishes AND a big bag of Cheetos was being shared by the big kids AND they were all playing on the same playground.

Makaiah desperately wanted to play, and I desperately wanted to run away with him… but he stayed and played and I stayed and internally panicked. I had to constantly remind him not to touch other kids, and tell the other kiddos it was ok, he didn’t need their help climbing the play set. I discreetly herded him away from the Cheetos bag a few times, and after it all did a full wipe down and prayed that he wouldn’t have a reaction.

This is life for us, every day.

We always have to remember to bring his emergency bag with his inhaler and spacer, two EpiPens, and antihistamine and that it’s always near him, no matter how "inconvenient".

We have to be constantly vigilant watching out for other kiddos and adults eating snacks or foods Mac can’t have and keeping him away from those people unless we know they’ve washed their hands.

Parks freak me out because I use to play and eat sammies as a kid on the playground, and now I don’t know if a kiddo did that before we came, and what if they schmeared their sticky little fingers on something Makaiah touches?

Zoos are just as bad, and he has had a few bad reactions just from wandering around and seeing what there was to see at the zoo (the doc thinks it has to do with animal dander).

We’ve felt guilty when there’s a surprise cake, ice cream, or treat for everyone EXCEPT Mac, who got a fig bar that we tucked into his emergency bag. (We learned pretty quick to pack Enjoy Life chocolate or Oreos in his emergency bags for those just-in-case moments). And yes, he did tell me he was sad he couldn’t eat the cupcake, but he didn’t want to get sick.

We are hoping with these treatments we can give Makaiah the gift of normalcy.

To be able to eat the surprise treat and sit by his friends at lunch without mom hovering and reminding everyone not to touch Mac until they’ve washed their hands.

We want him to be able to play without fear of touching the wrong thing or person.

We are hoping Makaiah can safely go to school- without us (because the way things are now, he may have to homeschool, or I may have to figure out how to start Kindergarten with him).

We have so many hopes for him and we need your help to make it all happen! To make it all a reality!

This is a game changer for Makaiah and for our family and we are so very thankful and so very grateful for any and all support and prayers you can give us.


Here’s Makaiah himself to tell you….


Makaiah will begin immunotherapy in May 2019, and his first  oral immunotherapy treatment is scheduled for July 2019, which is not too far around the corner.

We are all very excited for the possibilities, yet anxious to see how his body handles everything.

$33,000 is the minimum estimate we have been provided to get Makaiah to free-eat, so he can eat like most of us... what he wants, when he wants.

There are many more expenses such as copays, travel, additional appointments and treatments needed due to any hiccups, bumps in the road, or reactions he has to his treatments, and more.  We are just so very thankful and grateful for any and all the support you are able to give, for all your well wishes, and for all your prayers!

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Thank you again, from the bottom of our hearts, for being a part of Makaiah's life-changing treatment and journey!










If you'd like to contact us directly regarding support, donations, or fundraising ideas please email me at [email redacted]

If you'd like to follow along on Makaiah's journey we will be posting updates here as well as on
   Instagram:
 @feedingmonstermac
   Facebook: Feeding Monster Mac https://www.facebook.com/groups/1215507228609617/
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Organizer

Faith Patricio Cochran 
Organizer
Healdsburg, CA
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