Showing posts with label Liam. Show all posts
Showing posts with label Liam. Show all posts

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. 

Friday, December 25, 2020

2020 Holiday Greetings : Kid Style

Emilia:
2020 has been a very exciting year. I'm... dealing with 2020 and Covid-19 by drawing, Zooming with my friends ( although for some reason, I always seem to get kicked out of Zooms by ZOOM itself, ) and trying out some new hobbies and recipes. Hobbywise, I have a lot more interest in climbing and cooking. My climbing has gotten way better, and I can now climb v 0-1s. As for cooking, I've made a lot more new recipes, such as bite - sized apple tarts, which are simple and yummy. Also, I am about to turn 11, and in honour of that, I get to bake my own cake! I'm really excited! But overall, this year was a really fun year for me!

Liam:
aahh. 2020 the year of covid. It's been a rough year. although to me its just a normal year of schoolwork, reading, drawing, creating, and...sleeping until 8:00. (well... at least I try to sleep until 8:00.) hopefully the vaccine will come out soon, but for now, good bye 2020 and hello 2021!

Sunday, November 12, 2017

All Better

It's been a while.. cause we are swamped.. literally.

Here's a not-so-recent (from August), but the most recent photo of the kids that I have.


However, backtracking... Liam is all better. Went back to the doc's to get the staples removed. That was an ordeal! Getting staples out was harder than having them put in. The doc had to take a break in-between removing the 2nd and 3rd staple because it was very painful and Liam was not having any of it. An icy, cold blue popsicle did the trick.



This is his head now. It's healed quite nicely and luckily minimal scarring. Warning, I added a clear before photo at the bottom for comparison.


Since this incident, kid has added other minor cuts and bruises to his injury count. Tripped over his own foot. Sorry kid.. I think you inherited my clumsy trait...

Wednesday, October 11, 2017

Ow... Poor Kid.

Kid had a freak accident at school. Tripped on a ball, fell backwards, and smacked his head on a hard log. Luckily he hit a flat part versus the corner, but the impact was still significant to cause a deep laceration. So, another visit to Urgent Care.



Not going to show a close up of the wound... it was enough to traumatize Emilia.


Several staples to close up the wound and several popsicles too, to calm kiddo down.


Emilia has a lot of empathy. She was crying the entire time Liam was getting stapled. Poor kids!


Good news is no concussion and kid is fine, acting his usual self, other than his head is swollen and the area is sensitive. Hopefully this will heal up fast.. in the meantime, he refuses to wear anything but button down shirts and we are keeping him low-key until he is healed.

Friday, August 11, 2017

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...

Monday, July 17, 2017

Tiger Cap

This kid... putting on his Tiger Cap while learning how to be a superhero (aka watching superhero movies).


Thursday, June 29, 2017

Peaches and Creme... Or Maybe Not...

Sometimes things are fine and dandy, like peaches and creme...
And other times, it's not...


(*He threw his shoes off prior to this..)

I'm sure my parents are laughing and thinking
"Payback's a beeeeeyyyatch!!"

Saturday, March 11, 2017

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.

Friday, March 3, 2017

An Oldie, but Goodie

This was from last summer of 2016 when Liam went to a Super Heroes Camp. He looks so little in these photos.



There were lots going on in the camp. They made super heroes capes and masks that they wore all week long.


There were classes on various subjects.. this one looks like drawing. They also learned about real-life superheroes, police, fire fighters, people that daily do things that help people and save lives.


There were games and sports... or in Liam's case, he sometimes likes to sit and observe.


They learned about animals and got to pet a few critters. This part was one of his favorites.


In fact, he asked if he could have *this* as a pet (*This* is a Madagascar Hissing Cockroach!


A leopard Bengal cat is okay though...


Coloring..


The kids took care of the garden, by watering the plants and feeding the chickens.


And they put on a musical production at the end of the week.


Super Hero Kids.


Monday, February 20, 2017

Liam Climbs a 45' Wall, 5.5

The kids' regular exposure to climbing is definitely evident now that they are a little older, with a little more limb control. Liam easily climbs this 5.5 route, up a 45' wall with ease and natural technique. It's a long climb and I ran out of memory, so I caught the start and the end.





Friday, July 29, 2016

Liam's Song & Dance Debut

Liam's musical theater debut! The teachers were worried that he wasn't going to sing and perform on stage.. but my little introvert did a pretty good job considering he wouldn't perform on stage the whole week during practice.

Song highlights from Liam's performance:







Liam's solo:



Somehow I don't think show business is his calling...

Friday, July 22, 2016

A Leopard

Liam came home from camp one day, chattering up a storm. He was telling me about his day and what he did. I listened, nodded, and would provide him feed back every so often with "That sounds fun"... or an "Oh really?". One of the things he said today was "Mommy, I got to pet a leopard today. A real leopard." I smiled and nodded at him and said "Oh, okay." Did I believe him? Of course not. Petting a leopard?? Yeh, right!


What do you know? Camp sends out photos and here Liam is, petting an Asian leopard Cat cross-breed with a domestic cat, also known as a Bengal.

Okay kid. You ARE RIGHT! You did pet a *leopard* cat!

Monday, November 2, 2015

Put Another Candle on that Birthday Cake

...cause Liam is 4 years old!


(Vegan chocolate cupcake)

Obligatory pre-present opening photos...



And then the fun part...



Thank you Auntie Rena, Uncle Todd, Luke & Spencer for the firetruck! Liam was super excited. =)



Thanks everybody for bday wishes and presents that made his day special.

Saturday, October 31, 2015

A Brick Or Treat 4th Birthday

For Liam's 4th birthday, we went to Legoland's Brick Or Treat. The excitement!!


Brick Or Treating is Legoland's Halloween event during the month of October. Kids go "brick or treating" at either candy stations or brick stations (they get lego pieces) throughout the park. Brick Or Treat requires special Brick Or Treat tickets, which grants admission into the park after normal operating hours, 4pm til 9pm. We actually didn't go brick or treating because the lines are crazy long and we didn't want to spend the whole evening waiting in lines. Instead we took advantage of the time to roam the park and ride the rides.

Kiddos in their costumes. Emilia is Princess Aurora, and Liam is the Amazing Spider man.



Legoland.. the place for everyone to be a kid (aka Ryan!).



Liam needs to use his Spidey senses to direct us to the next activity.





Most. Fun. Night. Ever!


Boat ride (aka unoffical bumper boats).





And, we couldn't leave without the kids earning their Lego driving license at the Junior Driving School.


We were a little worried that Liam couldn't drive, but after a few minutes of figuring things out, he was the most in controlled driver lapping everyone that had crashed.





End of the night, we stayed til the park closed. Emilia was ready to find her way home.


Super fun for the whole family! It was a kick seeing the kids experience centripetal force and momentum fun for the first time on these kind of amusement park rides. Also turned out to be a good break and family time from October's hectic, crazy schedules (hence the no blog updates lately).