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.