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. 

Angioedema

Itsssssss baaaack... ALLERGIES!! I haven't written about allergies in a while. That's because the incidents have been pretty minor up til now. Liam would get a rash here and there, with uncomfortable itching, but they would go away. I was hoping that Liam would be growing out of it... In some instances, he is less sensitive such as tomatoes. He can eat spaghetti and pizza now, which both have cooked tomatoes. Raw tomatoes, not as much.

But he has had two incidents in the past 6 months that raises a cause for concern. Both incidents occurred at school, and in both incidents, we cannot identify the cause. The first incident, a rash and swelling occurred at school where we were called to pick him up. Luckily with some monitoring and staying at home, the rash went away. The second incident happened recently while he was away at daycamp. He came home with rash and hives on his arms and face. I gave him a bath right away to wash off any possible topical contact. The next morning, he woke up with even more rash and some swelling on the face. Below.

So we went to the doctor, and she gave him Claritin. I knew Claritin wouldn't do much for swelling, but maybe help with the hives. Maybe I should have asked more for the swelling since that was the main concern... and indeed, the next day when he woke up... Liam's face puffed up like a giant puffer fish... so much that he had trouble opening his eyes. Yup.. definitely a cause for concern now. Off to visit the ER, hospital again. I was hoping we would skip our happenstance yearly visits this year, but nope.

Obviously it's an allergic reaction. Luckily Liam's reactions are all external. Angioedema is the swelling of the face. Luckily it is not the swelling of the throat, which is Anaphylaxis. Either way, his symptoms are progressively getting worse with each exposure. We don't know what caused the reaction. Possibly cross-contamination at school. Maybe there is something else he is allergic to that we don't know. It means back to root causing this before it happens again. Below is Liam's face with swelling going down, several hours after receiving benadryll and steroid medication. I'm against taking steroids, but several sources agreed that it was necessary.

It's time to see the allergist again...

Man's Best Friend.. Apparently Not

I am learning with each new experience that I need to be more cautious and aware, and in Liam's case, being a helicopter parent is necessary. I took the kids to a birthday party recently and there was an overly friendly and excited doggie that came to greet the kiddies. It knocked Liam over, and proceeded to give him doggie kisses all over the right side of Liam's face. Liam was wailing from being over-powered by Fido.

Shortly afterwards, I noticed Liam's right side of the face and neck start swelling up, turning red, especially around the eyes and lips. Little bumps formed and I knew he was having an allergic reaction. I wiped off his face with water, and I kept monitoring his reaction, as well as keeping an eye on the where abouts of the dog to make sure it didn't come close to Liam again. Luckily, after an hour the reaction subsided.

Liam has been around dogs before. He has received kisses from dogs before too, so this reaction is a first in severity to be noticed. Luckily there's Google and a way to research. Apparently, 15 percent to 30 percent of people with allergies have allergic reactions to cats and dogs.

So, another one to add to the list of Liam's allergens and for the allergist to do follow-up checks. Sigh.

Dog Allergies can vary from dog to dog, from breed to breed. There's no set condition on if a particular dog will cause a reaction. Here's a good overview of dog allergies.

Now I have a gripe... Start of RANT.
My son, his allergies, indicate he is someone with a more sensitive immune system. I worry for more severe reactions later in life, especially when I am not around or there is no one paying attention to him having a reaction.

There are parents that pack peanuts in their kids lunch without thinking or caring about the impact it may have on a kid with allergies. I have read forums where pro-nuts parents fight for their right to bring peanuts to school and that other children's welfare are not "their responsibility". This is one such instance of many more Pro-Nuts advocates, Parents Protest Peanut Butter Ban.

I do what I can to protect my child and to teach him, and while I cannot prevent exposure to everything that may harm him, surely I would think people would want to work together to minimize deathly exposure to anyone. But WOW..seriously, parents are upset because their kid cannot have their favorite PB&J versus a kid possibly dying??! The selfishness and inconsideration astounds me.

Open Letter: No Peanut Butter

Take this up a notch, and vaccination mentalities are along the same lines. Vaccinations can protect the individual as well as those around with weaker immune systems. Vaccinations are meant to be used as herd immunity, to protect those with weaker immune systems that cannot protect themselves. They benefit more than they harm. Statistical data.

For allergic ridden people, luckily there is modern day medicine, Benadryll, Epi-pen, etc that make it possible to have something to alleviate reactions with potential life saving measure. It's not 100% guaranteed, but at least its some form of reassurance for those of us with no choice of the matter. They are are modern day meds that are full of unnatural, chemical laced drugs that pharmaceutical companies make a lot of money out of. Epipens retail for approximately $450 for each. To be safe, you need at least 2-3 pens around.. one at school, one at home, one in the daily travel bag, etc. But you know what? I don't care that the big companies make money (EVERY industry pushes to make money, its called a capitalistic economy) or that these are chemicals, the bottom line is that these drugs work and they can SAVE a life. Same thing with vaccinations. End Rant.

#annoyed_mamabear
#sons_health_can_be_directly_impacted_by_others_choices

Food Allergies Alert!

A recent post on getallergywise.blogspot.com reminded me again of how important it is to stay on top of Liam's food allergies. Yes. Is it confirmed. Liam does have some significant allergies that we need to be cautious of.

A while back, I wrote a post about food allergies as I pondered Liam's averse response to eating rice. His rice reaction remained consistent over numerous occasions of trying to feed my Asian boy some rice with no success. Over the course of the past 8 months, I cautiously introduced the standard mild, low allergic foods - peas, carrots, yams, green beans, bananas, apples, chicken, etc. Even then, Liam displayed signs of random sensitivity related to foods with a delayed 24-hour period reaction.

For his first birthday, he had a pumpkin muffin, and right after his face turned red. I didn't think much of it, but the next day, he had his first taste of cake. This time, his face swelled red immediately and a rash of red dots formed. Both instances screamed "egg". So, sure enough, when we saw the pediatrician, a suspicion of egg allergy was enough to warrant a visit to the allergist.

Ah.. the allergist... secretly, I was hoping we would get the referral. It has been difficult figuring out what to feed Liam because he would keep having reactions to foods. He has been living off of yams, bananas, and milk for most his 1+ year life as those were the only foods I could confidently deem safe.

So... the results... my little, sweet boy is pretty much allergic to EVERYTHING. Okay.. I'm exaggerating, but he is allergic to a lot of things and has sensitivities to a lot of things.

1) Peanuts
2) Eggs
3) Fish
4) Shrimp
5) Peas
6) Carrots
7) Green Beans
8) Kale
9) Avocado
10) Rice

He is allergic to items 1-4, and he is sensitive to items 5-10. 8-10 have not gone through allergy testing, but Liam's reactions/symptoms indicate a sensitivity. Anyhow, my boy cannot be vegetarian. He is a-okay, no reactions to meat, but seriously.. carrots, peas, and green beans! Carrots are in EVERYTHING. I realize now why his reactions in the past were seemingly random. I would cook things in vegetable broth.

2012 has been challenging to provide healthy and nutritious meals for the whole family. I spend way too much time trying to plan and figure out what to buy, what to cook, and then cook different dishes to accommodate everyone's eating habits. Between all of us whether it be allergies, or diet, or simply likes/dislikes of food, there is always one dish that someone can eat, as well as one dish that someone cannot eat. Hopefully now with an idea of Liam's allergies, 2013 will be easier in planning meals for the family!

Food Allergy Awareness

Ryan and I both have food allergies. Ryan is lactose-intolerant. Both of us have adverse reactions to certain high-fat content foods. My throat feels like it closes up and a sore throat occurs. In addition to the self-diagnosed allergies, I also have random skin sensitivity and rashes. Emilia and Liam also both have skin sensitivities. So given our background, I would think I should be more aware.

We recently started Liam on solids and went with the conventional rice cereal. Ryan fed Liam a few bites, and for the next hour, Liam kept burping and spitting up. Didn't think much of it since it was one of his first solids. We continued with solids here and there over the next month, trying some banana and avocado and sweet potato. Liam finally got the hang of opening his mouth, moving his tongue, and swallowing food. Yea! So one night, the sweet potato was too watery, and without really thinking about it, I mixed in some baby rice cereal. Liam was doing awesome and eating all of it. He had eaten sweet potato earlier and had no reaction, so I thought all was good. We put him to bed and he fell sound asleep quickly. A little after midnight, there were gurgling noises coming from his crib and I knew something was wrong. His body was heaving and he started vomiting. Needless to say, the next 1-2 hours were spent with Ryan and I cleaning his crib, giving him a bath, and checking up on him. He continued to have burpings and threw up (just a little) again.

While this is not conclusive for a rice cereal allergy (not common but does exist) and it may be his young system in development, it reminds me that there are food allergies and families that deal with severe food allergies on a daily basis. In fact, people may have minor food allergies and not even be aware of it. My knowledge and awareness has increased especially with going on the Paleo diet/lifestyle, which in short, is dairy-free, gluten-free/grain-free, and legume-free. I have become much more aware of how difficult (and also how easy with the right tools) it is to live with food restrictions in a non-allergic friendly and highly-processed-food society. Luckily for me, the food restrictions are by choice without any adverse effects. Imagine if it isn't!

I have been following a blog, getallergywise.blogspot.com, co-authored by some moms I went to high school with, that document life with severely allergic kids. It definitely sheds light on how different of a life one would have, as a parent, to add something that seems so benign as "eating food" to the list of things that could harm your kid and how one simple lapse is dangerous.

I had taken Emilia to a birthday party recently and with her toddler-ways and a baby boy to tend to, I did not 100% keep track of Emilia. Next thing you know, she's eaten half of a chocolate chip cookie that someone gave her. It happened twice, and while I was not happy that her first tastes of chocolate came from a stranger and she had an overdose of sugar high, Emilia does not have any known food allergies and therefore it was not a freakout moment. I really hope that Liam does not have food allergies. We have yet to see. This does remind me to be diligently cautious when introducing foods to him, and also how fortunate the rest of us without major food allergies are!

A note to end on, while I am not 100% Paleo anymore (that'll be a different post), I take away a lot of positive changes from it and stick with being mostly dairy-free and gluten-free (not grain free though). I do think there may be sensitivities to dairy and gluten, as since being off of them, I have found that my skin rashes occur much less. Could it be from the change in diet and eliminating certain foods?..maybe.. maybe not? Whatever it is, the current lifestyle is working and sure beats going to the docs and taking medication. Last note, please do not feed any kids without first checking with the parents!