Food Allergy Awareness & Food Bullying

We embarked on a commitment and journey about a year ago in hopes to eventually achieve food freedom for Liam. Actually, it began about 3 years ago. At that time, Liam had incurred several food bullying incidents at school. Classmates did not believe him with his food sensitivities and intolerances, and tried to trick him into eating foods that would trigger varying degrees of reaction. There were instances of taunting and using food as a threat against him. Liam does have a 504 plan to protect him, but kids are kids, people are people, and incidents still happen.

https://www.foodallergy.org/resources/facts-and-statistics

August 10-12, 2017. First time with a serious reaction. We picked Liam up from a YMCA summer camp. Supposedly he was separated from the kids eating peanut butter sandwiches. There was no confirmed information on the allergen and exact cause. Suspected peanut cross-contamination.

We didn't know the extent of his reaction, the next morning Liam was found with his face so swollen, he was in pain and could not open his eyes. We were lucky it was external swelling versus internal swelling over the night.

This was 1 day after our ER visit where he was put on immediate steriod treatment to dampen the immune system and reduce swelling. It would take a week before his face returned back to normal.

As Liam aged, the trigger mechanisms and his reactions became more worrisome. One instance he had swelling so intense, it was as large as a softball, sticking out on the side of his neck like a grotesque disfigurement of a tumor. Lucky for us, Liam's reactions up to this point had been external swelling, Angioedema, instead of the internal swelling, which results in Anaphylaxis. 

October 26, 2019 - Waiting in the ER after reaction to ingestion of 1/4th of a donut with peanut crumbs. Angioedema starting to kick in below his right ear. At this point his jaw was hurting and he was having a hard time moving or swallowing.

Emergency trips to the ER are a regular yearly occurrence (I do not have photos of every incident), where he would be given doses of steroids to dampen his immune system, and take a week's time for recovery. As a family, juggling everyone's schedules and time, it was always in the back of our minds not if, but when the next occurrence would happen. This was our standard life of a family that lives and deals with a child with severe food allergies. At the allergist, we were also lectured on not being careful enough, that Liam had experienced way too many incidents and we had to do better because there is never a guarantee or a predictor of how severe the next reaction could be. The allergist was right. Each and every failure should be able to be prevented, yet we didn't know how to protect him from the actions of others.

Ryan learned about the one-of-the-kind SoCal Food Allergy Institute program through word of mouth and researched it. Fairly new research program, about 10+ years old, that uses biotech research combined with artificial intelligence. Highly sophisticated and complex methodologies are used to evaluate hundreds of biomarkers across allergen proteins to the individual's immune system's state of allergic potential and analyzes the comprehensive data through diagnostics with big data analytics, combining applied mathematics, machine learning models, and complex diagnostic evaluation. Science and data, not guess work. We knew this program is a life changing potential, though it is time intensive, requires full commitment, expensive, yet with a high rate of success... and so we signed Liam up, 3 years ago. This program has patients from all over the country that fly in for regular appointments and we were number 2600+ on the waitlist.

A misconception of food allergies is that it is assumed if a person is allergic to say, peanuts, that oh, you just avoid peanuts. However, it could be more than just peanut. There are foods with similar protein makeup, while it may not be as severe in symptomatic response, are still foods that can trigger negative symptoms - bloating, gas, itchiness, hives, stomach aches, etc. Peanuts have proteins similar to those of other nuts as well as legumes. 

We didn't expect to get into this program for many years later, but with Covid hitting, families putting the program on hold due to restricted travels, and the institute expanding, Liam was able to be admitted into this program at the end of 2020. I did not know if we could commit, as Covid had impacted Ryan's business significantly and the financial costs are not light, the time commitments to prepare and cook daily foods for him to eat for years to come, and the doctor's appointments, 2 days every 6 weeks where we need to pause our schedules, to drive up to Long Beach for progressive food challenges and progress evaluations. Full commitment is required for the success of the program, and it is not an easy commitment because it demands a lot of time. But then, how could we not commit?

His sensitivities and reactions were getting worse, and always potential for life threatening. And in Dec 2020, instead of the traditional allergist office that can run only a few selected sample of skin prick test or even blood draw analysis on selected foods, which provide a limited and sometimes inaccurate scope of allergic foods, we finally had SOCAI's (SoCal Allergy Institute) scientific data and evidence from his blood draw and biomarker comparisons to know the actual gauge of all the foods that he is intolerant to and the varying levels from borderline intolerances, to sensitivities, and then to severe anaphylaxis. Knowing the exact foods, the relationship of the similar foods, have reinforced what I had observed and experienced before as foods that are harmful for Liam. 

Nice visual summary

* Peanuts, Hazelnut, Almonds, Soy, Pea, Chickpea, Lentil, and beans are all in one category of similar proteins with varying food allergy reactions, from borderline intolerance to anaphylaxis. 
* Cashew, pistachio, and macadamia are another category of similar proteins with varying severity. 
* Walnut, pecan, Brazil nut, Chestnut, pine nut, and coconut are another category. 
* Sesame seed, sunflower seed, pumpkin seeds, flax, mustard, poppy and chia are yet another category. This category explains why Liam used to get stomach aches when I fed him Dave's muli-grain Killer Bread thinking it was a more nutrient dense bread for lunches versus plain white bread.
* And then there's another group with seafood. 

Liam has been in the Tolerance Induction Program for 10+ months, and it's no joke, it is not easy. While there are different groups of food that affect him in the list above, in the program, we are focused on addressing the ones that are anaphylactic.The rest of the foods, we practice avoidance. The program works to slowly and gradually increase his tolerance so that one day, he can eat the severe anaphylactic foods without his body trying to kill him.

This will take years, assuming he can stay consistent and on track, as his body is stressed every single day. He takes adult dosage antihistamines every day as well, to dampen his immune system's response. And once he graduates from the program, he is in remission, he still needs to follow a maintenance program to upkeep the tolerance, and continue to do yearly blood testing for comprehensive data analysis comparison with biomarkers. There are cases where a graduate doesn't do due diligence with following the maintenance, and then becomes allergic again and has to go back to actively doing TIP again. 

Food allergies are not like an illness that has a "cure". It is lifelong. The foods above are foods that make him sick to varying degrees, that we hope he will be tolerant of one day. Tolerant. Tolerance is not thriving, and while he may one day be tolerant, these are still foods that his body naturally rejects.

Part of the reason for this post is to bring awareness to food allergies and give a glimpse of how it impacts. Another is to highlight that food bullying exists, from childhood to adulthood, due to a real lack of understanding from others that have not had the experience of food allergies and the struggles with it. Others may have strong convictions on what and what not to eat based on internet researched rhetoric of ethical diets or lifestyles. That is dangerous. What you eat is a personal choice as every individual's body responds different to foods. Food allergies are one very valid reason for that. And no one other than a certified nutritionist and allergists that understands your body's metabolism and reactions, can tell you what will be nutritionally sound and healthy for your own body. 

Feels like Summer

First of the summer heat waves! This kiddie tub looks much smaller than it use to... Not too bad though, it's lasting us 3 summers now for water play.

The Friendly, Neighborhood... Batman??!

So... look who we bumped into in our neighborhood!

The kids wanted NOTHING to do with Batman and Batwoman. They wouldn't come close to the cape crusaders and stood a good 30 feet away, not even when Batman tried talking to them. Haha. Well.. at least they stay away from weird looking strangers!

However, the instant the cape crusaders stepped away (they went into the deli to buy drinks) from the Batmobile, the kids pounced at their chance to check out the car.. esp Liam.

The novelty wore off really fast. Here is Batman ready to drive away in his Batmobile.. with lots of adults (not in the photo.. they were all where I was) taking photos and videos, and there is Emilia... hanging out by the tree, reading her latest library book.

Well.. at least kids know what's important.. not the fancy suit, but the car and the books. =)

Them Kids

Just Another Climbing Session

The kids literally know the ropes now. A milestone of sorts, as the kids are displaying knowledge and skills of climbing independence! (Of course there is still adult supervision.) They know their figure 8 knots, the double fisherman knot, standard climbing commands and communication, safety checks, etc. Emilia even provides beta!





Kids have been learning and developing their climbing skills. Here Emilia climbs an easy 5.5 and her techniques are starting to show. She's been learning dynamic movement, backstepping, flagging, smearing, heel hook.



Check out Emilia's dynamic movements at the start of this climb. Here's a re-play, slow-mo of her two double hand releases and grabs!



Regular climbing sessions and Neil Greshman's Masterclass Videos are paying off.

Hello, October...

Hello October... you arrived faster than expected. No matter, we've been looking forward to you!

#AllThingsPumpkin #SoonToBeHalloween

Sleeping In = Furniture Rearrangement

Backtracking to earlier, during the start of summer...
The kids wake up before we do nowadays, and on days when they have a couple of wake hours before us, this is what happens.

But how can I be mad at them when they are reading on their own??!

Oh yeh, that's right. It's a mess! I believe this creation is a two person car... or a train. Definitely some automotive vehicle that's for SuperHeroes.

On another weekend, I beat them to it and used a toy Build and Play Fort Construction set the kids received last Xmas as a gift. Fort success!! Minimal furniture rearrangement!

Kids loved it and played it in for a few hours.

Liam enjoying the fort - laying down while eating strawberries and contemplating the meaning of the fort...

It was fun for a few hours, and then it was more fun tearing it apart and building something else!

And the most recent weekend morning wake up findings. It's their home, compartmentalized for functionality.

The kids win. Maybe I'll give them back some of their toys!

Happy Together

I think the kids are realizing that two of them together equates to double the fun, or for me, double the trouble. Lately when they have been getting along, they have been getting along too too well! ;P Here's the dynamic duo playing "twinsies".

And yes, we did take the kiddos out like that... twinsies, hair clips, and such.. except for Liam's low rider shorts (which are actually Emilia's). Sorry kid. I do not approve of the hip hopping, baggy pants, underwear showing style!

Emilia's new real life doll.

This will one day be blackmail photos and videos.

These Simple Moments

Winning or Learning

In competition, there will be a winner and a loser, but there is no losing (unless you quit), only learning. This was a lesson from a recently kids library book that we picked up and read. The simple point of the story followed the emotions and thoughts of two young siblings' journey into competitive sports as they joined a soccer team. It went through the ups and downs of emotions, thoughts, insecurities, and struggles of the siblings as they learned about perseverance, to work hard to develop in skill, and to understand a bigger, personal concept of competition and winning through the game of soccer. They were guided by their dad to view each challenge and loss as an opportunity to learn, and that true winning is about what you can gain through attitude and perspective. Great simple kid story that was so direct with the message.

When my kids struggle, whether they are frustrated with not being able to do something right, or they want to give up, I remind them that there is no losing, just learning and to find what they can learn from the situation to become better.

The story we read coincidentally came at a great time, a few weeks before Emilia's first jiujitsu competition!!

Let's start at the beginning. Our dojo hosted a local jiujitsu competition and encouraged the kids to participate. It would be good experience in a kid-friendly format and have more kids from our own dojo attend. I thought it was a great short term goal for Emilia to keep focused on as we encouraged her to practice and learn in her BJJ classes.

One of the moms at the dojo made signs for all the kids.

Competition experience is so different than regular practice at the dojo. When we walked into the gymnasium, there were so many people there - People in the stands, kids in their Gis warming up or playing on the 6 competition mat areas, people going about with a purpose, getting ready for the competitions... the referees, the coaches, photographers, nervous kids, parents, etc. The feeling in the air was that of excitement and nervous anticipation. I could see my kids looking around and observing, taking it all in.



Emilia was simply being Emilia.. which I love! I tried to get her to warm-up, maybe spar with some of the kids that she knows, but she was really just taking in the surroundings, eating some snacks, and practicing her version of "cartwheels". Competition environment? It didn't change how she goes about things.

Emilia's version of "Cartwheels"



The competition was soon starting, and the kids were lined up and sat on the edge of the mat where they would be competing on. Emilia's bracket was the TODDLER DIVISION, AGES 4-5. We did not sign up Liam for this because even though he qualifies in age, Liam just doesn't have the base concept down yet. However, he wanted his Gi on and wanted to be a part of this too.. so we let him sit with the rest of the kids.

Emilia's first match was the 2nd one on the mat. The first match were two kids from her dojo, Henry and Cohen. This is representative of what I expected from kids in the TODDLER division. Well.. okay.. maybe not as much spinning around...

Henry and Cohen's Match


Then Emilia was up. Her match was with an unknown kid, not from our dojo. I had watched the kid during pre-comp practice and was already nervous because the kid seemed more serious and aggressive than the kids Emilia is usually paired up with in class. I was hoping that it would be a good learning experience that would drive her to understand why she goes to practice and learns these skills.

E's Match


The match, actually most of it, turned out to be quite unexpected. Emilia impressed me as I can see her focused determination. Kudos for trying! However, at the end of this video, I stopped filming because I could her her little voice crying. It was just loud enough where I could hear how hurt she was.. combined with gasps of breath in between, I also knew she was trying so hard not to cry. What happened was the boy did an arm bar maneuver on her and the referee did not stop it in time. The arm went into full extension, and hyper-extended the elbow joint. Actually, even when the ref did stop the match, the boy didn't let go. The ref had to pry the kid's hands off of Emilia's arm. I have never had an arm bar done to me before, but from what I hear, it is pretty painful.

Luckily Ryan was there to help check on Emilia. That particular sound of Emilia's cry, one that she rarely ever makes, hits a deep mama instinct. In fact, the mama next to me put her arm around me. No parent wants to see their kid hurt.

At TODDLER bracket, I thought it was ridiculous that someone teaches a kid that's only learned bladder control for 1-2 years, how to do a highly skilled and potentially harmful move, and to use in competition. Emilia has not learned the arm bar move nor how to defend it or how to get out of it.

I was beyond mad and upset, not because she lost, but because she was hurt in such an unprepared and unfair way. I could hear the other kid's dad in the background yelling "Arm bar! Arm bar!" while my brain was processing "Wait... kids do arm bars at this age? Emilia doesn't know arm bar!".

However, Emilia amazed me. This is PROUD MAMA MOMENT... she obviously didn't win, in fact, she was utterly crushed...(had to forfeit her 2nd match). But after we iced her elbow, filled her with the best medicine - candy, and gave into her every request the rest of the day, I asked her what she thought of the day's event and how she felt. She said to me "My arm hurt a lot. I really tried my best, but I didn't know the arm bar. I'll need to learn more and maybe next time I can win a gold necklace. Can we go to the beach?" (Note: She wants the gold medal because it is a pretty necklace!)

That's it. She didn't blame me, nor her instructors, nor the boy, nor the unfair match-up, nor the boy's parents that kept yelling for the arm bar during the match (and again at the sandbagger's 2nd match!), nor the judge (who felt really bad), AND she didn't blame herself (unlike me with lots of guilt). She was happy with her effort, and the rest of the situation, she accepted it as "it just is" and moved on to enjoy a beautiful sunny beach day.

As for mama, I learned as well. I spent the next week researching the culture of jiujitsu, learning about the different dojos and their teaching philosophies. Many dojos, non-Gracie affiliated, are geared towards sport jiujitsu, which is winning competitions versus a more practical nature of self defense in a nurturing environment. The dojo we go to is more focused on character development, which is why Emilia has not learned arm bars and chokes yet. This puts the kids at a disadvantage for competitions. That should have been stressed and made aware to the parents! However, apparently the topic of teaching young kids technical and potentially dangerous moves of joint locks and choke holds are highly debated, even though it is common in sport jiujitsu.

My kid's journey and experiences will be her own, no matter how much I try to control the situation and protect her, life is life. It will be unfair and unexpected. Situations like this only help prepare her better to face the unknown future. Somewhere, somehow... my little girl already inherently has the right attitude and perspective. She takes a loss as an opportunity to learn. In fact, she was mimicking the arm bar move at home the other day, solely learned from watching and observing because again, she hasn't been taught. Her heart, her mentality, her attitude.. is pure gold. She doesn't need to win one. She knows how to approach life, at 6 years of age, more than most people. Way to go baby girl!

Promotion!

Today was a great day at BJJ. Emilia has been dedicated and worked hard to learn and grow in judo and jiujitsu.

She had her first belt promotion/ceremony today! Moving from a White Belt, earning stripes along the way, to now being a new fledgling Yellow-White belt.

I asked her how she felt getting her new belt, and her response was "shy." Happy and shy. =) I guess it is being in front of a lot of people, clapping and cheering for her. And then she needs to go down the line, respectfully bow and shake hands with all the black belt senseis.

A special thing the kids witnessed too, was Sensei Paulo getting his promotion. Sensei has been a black belt for the past 28 years, and today he was promoted to what he calls, the last belt he will ever receive, the red-white belt.

Sensei also had a great talk about how the stripes are just regular tape that you can buy from Home Depot. A belt is just a belt you can order online. But to those that practice and put in their hard work, their effort.. each achievement is about the cumulation of their hard work, effort, wins and loses, and skills and experience that the belt/stripes are symbolic of. That's something that one cannot simply buy, so be proud of where you are at, with each and every achievement.

Sensei, of course, was emotional, as this is his life's work and passion. Not sure the kids really understand all that much at this age, but I think it is great for them to see their Sensei getting promoted and re-iterate his dedication towards the sport and development for future generations.

After the ceremony, E with her new belt.

And her official promotion certificate.

The BJJ familia, group photo.

Super proud of E and celebrating the moment today, but back to consistent hard work and dedication. Yellow-white belts will definitely now be more challenging for Emilia to spar with, but open up more opportunities to learn and hone her skills more. At the same time, I'm hoping that Liam will get that spark of understanding that will help him grow. Emilia knows what this is all about.. you can see her observing and processing during practice. Liam.. it is still fun and games. He has improved since the early days though, there is definitely less lying on the mats now.