Monday, September 6, 2021

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. 

Sunday, December 27, 2020

Part I: 2020 in Review - Pre-Lock Downs

2020 started off mostly right, really good weather for January and for climbing. We started off the year with climbing outdoors every chance we had. Even the one mishap occurrence of attempted car break-in on the 1st day of the year was considered a lucky close call. Our passenger window was cracked, but not broken into and nothing was stolen. Our friend, Devon, was not as lucky. In hindsight, maybe this was a bit of foreshadowing for 2020.
Cougar Crag

Attempted break-in, cracked window
Devon's car break-in
Anyone that knows us, knows that climbing is a big part of our family. Being outdoors, connecting with nature and each other, becoming a participant of the landscape versus just an observer, reminds me that we are small in the grand scheme of this world. This moment in time is what we have, and yet the surroundings.. these rocks and boulders, the land, will last longer than we will. My kids will come back to these places and remember their youth; This land and this activity may also be comforts and escapes for them when life is overwhelming. They may come back to these places and feel the same feelings that their parents did when climbing these rocks and camping in these aeas. Joys of success, agony of defeat, frustration in limitations, discovery of determination and grit, and amazement in persistence and determination through small steps, small changes.

Ryan on Stranger Danger, 5.10c
Liam on Insecurity Never Wins, 5.10a
Joshua Tree

Ryan on Satellite Left, v3 pg-13
Warm up bouldering
Liam
Emilia chilling
Kids against JT Sunset landscape
Roger & Ryan bouldering JT Sunset
Beautiful pink JT sunset
New Jack City

Ryan working The DX, 5.12d
Dylan and kids just chilling.. and napping
Not sure if it was because I was waking up earlier, but seems as if there was so much more beautiful sunrises and sunsets this year. One of the many photos I took throughout the year. This was right before the 1st Covid lockdown, mid-March.

Beautiful Sunrise
To be continued...
Part I: 2020 in Review - Pre-Lockdowns
Part II: 2020 in Review - First Lockdown
Part III: 2020 in Review - Red Tier
Part IV : 2020 in Review - Second Lockdown

Part II: 2020 in Review - First Lockdown

While we were keeping track of latest developments of Covid, it still came as a shock when the 1st lockdown happened. Work, school, schedules, daily life was now uncertain. Grocery stores had lines of shoppers buying everything off the shelf. We didn't panic but prepared for a long haul at home.
Liam built an army of paper malitia to guard the compound.
Adapting wasn't the easiest, and took some iterations of logistics. Ryan and I had to keep tabs on the kids and help with their schedules and school work while juggling our own.
Having the kids as my new office-mates was quite distracting.


With anything, there's always ups and downs. One of the upside of this was we finally we put the home gym to good use.
We started off lockdown with keeping our weekly tradition of family climb time... that lasted a couple of weeks. =P


The start of lockdown was okay, but as time went on, obviously there was still quite a bit of adjustment and adapting. Kids missed friends and school. They missed going out and being active. In fact, I found both of them one afternoon, just sitting in the car, in their carseats, hanging out and reading. They missed being in the car!

Web surfing has gone up and kids have discovered Mark Rober, a former NASA engineer turned gadget inventor. His YouTube video on squirrel ninja obstacles is the best!


They watched all of his videos and created their own version of squirrel catcher traps in the yard, and their version of the glitter bomb.


We literally spent the first 6 months of the firt lockdown at home, aka our compound. Ryan's saying at that time was "No one leaves the compound." If you leave the fortress of covid-freeness, you don't come back in. Yes. He was that dramatic. InstaCart delivered groceries to our gate.

There were moments of frustration, anger, fights and tears, and stress on all. Our 24/7 constant proximity to each other meant nerves getting rattled often. Still, this time together presented unexpected opportunities to get creative for fun activities, explore our yard, and do things at home that we simply were too busy to consider doing before.

Lots of cooking and baking.
Iterations of mask making. Trial and error of different patterns.
Kids had an awareness of the situation and they, on their own, drew pictures, wrote stories, etc in their manner of processing and what they could do for support.
Live action superhero comic


There was a bit of exploration in the backyard this year.
This is most likely a giant leopard moth caterpillar.
A cool find! An owl pellet.
There were several pet spiders the kids would feed daily with bugs found in the yard.


Saved and freed a couple of bats that fell from their roost.
This hawk flew into our window. It was a little frazzled, but okay.
Liam's become an expert at catching lizards without them losing a tail.
We do have a bit of wild life here and summer time flew by with us observing the changes in nature. Bug season came with lots of bugs. I never took photos of "Big Fatty", the biggest, thickest lizard we have seen around here with a tint of orange. It would come visit our deck every day during katydid season. We had numerous giant 2" long katydids lying around for it to eat.

For a short time, praying mantis's started appearing. This one with a classic "praying" pose.
Giant wolf spider! Body about an inch long. This one was inside!
Wandering scorpion found in our sink. Ryan likes to relocate these to the numerous squirrel or gopher holes in the yard. =P
We planted and grew pumpkins from June through November.
Makeshift mini-pool when the summer temps were hot.
Kids opened up an at-home pop up restaurant.
Check out this menu!
Ryan taught the kids how to bunny hop on the bikes.





As well as teaching them how to ride the electric dirt bike.

Hands on lessons on computer architecture.
The whole family joined in for the kids first 5K race, virtual at-home edition. They *were* suppose to train for this, but it was really off-the-couch kind of run. Don't ask about our time. Simply completion was an accomplishment.


These were some of the highlights from the first lockdown. Obviously I focused on the high points, and like most social media, the lowpoints are not really displayed. There were lowpoints, some not so good ones, and when lockdowns started to ease, about 6 months now that we exclusively home isolated, we knew the kids needed out of the compound.

Kids marked up this portion of the wall by putting on their climbing shoes and climbing it. There's a sign that clearly says "Please Remove Your Shoes". 🤦‍♀️
To be continued...
Part I: 2020 in Review - Pre-Lockdowns
Part II: 2020 in Review - First Lockdown
Part III: 2020 in Review - Red Tier
Part IV : 2020 in Review - Second Lockdown