life threatening food allergies

Food Allergies and Classroom Parties

There are a couple food allergy misconceptions I want to clear up with this post.

The first is that peanuts are NOT the only food allergy that can be life threatening. I don’t understand why this is a common assumption. Yes, peanuts are harder to control because the proteins that cause the allergic reaction can become airborne which is a total nightmare.

Peanuts are harder to manage because of the airborne aspect. People who are allergic to peanuts tend to have more frequent breakouts because avoidance is trickier than with something like milk. However, they are not the only fatal food allergy.

Any food allergy can potentially become fatal. Yes. Any.

That is the second thing I want to clear up when it comes to food allergies. If any food allergy can potentially become fatal, and there is no way to predict when a food allergy can become fatal, therefore all food allergies should be taken seriously.

To me, that logic is sound. However, not everyone will agree.

How Do People Die From Food Allergies?

Let me explain how people die from food allergies. An anaphylactic reaction can start out like any other food allergy response, but it turns for the worst very quickly. The body starts forming hives and swelling internally and under the skin – that is called angioedema. Air passages are blocked off and the reaction can suffocate the person within minutes. The only thing that can stop an anaphylactic reaction is an injection of epinephrine aka epi-pen. It is adrenaline that rapidly reduces the symptoms.

My daughter has, unfortunately, gone into anaphylactic shock one time in her life and that day will always haunt me. I almost lost her that day and the swelling was so horrible I didn’t even recognize her.

The only way to prevent an anaphylactic reaction is by complete avoidance. That seems easy but it isn’t as straightforward as that in a world that revolves around food.

The first time someone is exposed to a food that becomes an allergy it is because the immune system has decided that food is the enemy. The body thinks that food is something harmful and it freaks out by producing antibodies called Immunoglobulin E (IgE). Our immune system is what protects our body from harm and in the case of food allergies our immune system is being a bit paranoid – no one knows why some people’s immune systems develop allergies, and no one understands why the magnitude of the reaction varies so much.

If you know about Oral Immunotherapy that is a different topic that involves a clinical setting, initiated and controlled by a board-certified allergist and immunologist over a long period of time. Exposure to a food allergy in a clinical setting is a different circumstance than being exposed sporadically. Oral Immunotherapy is not something anyone does without a doctor overseeing it’s progression. I just want to clarify the difference so there isn’t a misunderstanding of the two.

The only way to stop your body from freaking out and creating IgE’s that cause allergic reactions is by avoiding sporadic exposure. No exposures = no angry antibodies. If your body is not being exposed to that allergen then it has nothing to attack.

Imagine your body is like a castle and your immune system is the castle’s defense system. The IgE’s are the soldiers who attack invaders. The more times your castle is attacked the more you build up your defenses. You reinforce your borders with more soldiers, your soldiers are on high alert and may be a little spazzy. You are expecting battle and ready to attack these enemies every time they poke their heads up on the horizon. If this battle continues to happen over, and over, and over, and over then your body keeps building up the IgE’s.

Continually putting your defense system on alert can result in an uncontrollable and devastating battle.

That is where anaphylactic shock comes into the picture.

Peaceful times in your body creates peaceful antibody soldiers.

The theory is that the more avoidance you have the more your soldiers chill out and it is possible they “forget” that something was an enemy. The longer you go without exposure the less paranoid and strained your defense system becomes. Studies have shown that you are more likely to “grow out” of an allergy if you do not have sporadic exposures. Studies have also shown that the more you expose your body to an allergen the more you increase the possibility of an anaphylactic reaction.

When someone tells me they, or their loved one, has a food allergy I cannot help but stress the importance of strict avoidance. Just a bite of a “mild” food allergy and some benadryl can do more harm than good in the long run. It’s just not worth pushing it even if it is not easy.

When my daughter was an infant, and she was allergic to well over twenty foods that were all possibly life threatening, I was told it would be improbable to avoid all of her allergens to allow her IgE levels to lower. Notice I did not say impossible. I was just told it would be too difficult. It has been difficult but it hasn’t been impossible and we have been quite successful despite a few battles. Our lifestyle is creating a safe home environment and careful measures outside of the home to minimize her exposure. It is not easy but it is what’s best for her.

We have been, mostly, successful. When she has had an unfortunate exposure it sets her back weeks and even months. I see the difference every time she has an allergic reaction – She has a reaction and her body becomes so obviously on alert that the slightest exposure after causes a more severe reaction every time until her body calms down again.

She is now eleven and her food allergy count is down to five. She still has insanely elevated IgE levels but she is improving. It is unclear what exactly has caused her to “lose” some allergens, but we do know that strict avoidance has significantly helped her IgE levels improve. We know that her food allergies can continue to improve or they can change for the worst any day. We just make the most of it and appreciate what we have that day.

The wild card in the deck of allergies is that continuous exposure isn’t the only way a food allergy can go from mild to worse. The scariest thing about food allergies is that you never know when an exposure to an allergen is going to be mild or fatal. One day you can have the sniffles. The next time your airways could close and the only thing that will save your life is with an epi-pen. On the other hand you can have twenty days of sniffles and never need an epi-pen.

You just never know.

But, I Don’t Have To Worry About Food Allergies… Or Do I? Should I?

Anyone can also develop a food allergy at any point in their life without warning. It happens more often than you may assume.

I’ve grown up with mild food allergies. I used to only react to pork and on a very minor scale. I would have to eat an entire ham in order to have any reaction. When I was a teenager I ate Mahi Mahi for the first time and broke out in hives. About ten years after that I ate it again and had a horrible reaction, when I was on a camping trip, after eating one bite. Two years ago I started to react to shellfish. I had never had a shellfish reaction before that day. I was actually on a blogger trip to Santa Barbara as a guest of Toyota and we were eating at an amazing seafood restaurant on the pier. The reaction came on quickly and I thankfully had benadryl on hand because it’s always in my purse due to my daughter’s food allergies. It wasn’t a horrible reaction but my lips swelled up and I broke out in hives. My friend’s and I kind of joked about it all because I looked like a cartoon character but I took it very serious. I completely avoid shellfish now.

A lot of people feel burdened by the increasing number of food allergies. Food allergies being managed at school, and especially over classroom birthday parties, is a huge topic of debate. It is a topic that has strong dividing lines that are exhausting for families of kids with food allergies. Some people feel so strongly against food allergy accommodations that they feel there should be specialized schools for kids with food allergies or they should all be homeschooled. Some people are of the opinion that the only food allergies that are worth accommodating are those that are deemed “severe”.

The problem with that line of thought is no one has an idea when a reaction will go from mild to severe. What causes a runny nose today could kill a child tomorrow.

The other problem with that line of thought is that anyone can become allergic at any time even those that have no family history of food allergies. So, someone screaming for their non-food allergic child’s rights could easily find themselves on the other side of the fence.

Someone could eat something like cashews without any issues their entire life and, without warning, go into an anaphylactic reaction from just one bite.

I will never be okay with or agree with the attitude of excluding, discriminating or punishing those with disabilities. Yes, some people feel that if it isn’t their problem then they shouldn’t have to deal with it. Some people feel that their right over eating what they want is more important than the right of a person with burdening food allergies. The attitude of “Suck it up and deal with not being able to eat the food you want.” can go both ways.

I would rather be known for the person who shows compassion, empathy and looks beyond my own selfish impulses rather than the exact opposite.

It is important that the world develops a little more compassion, patience and understanding about food allergies because while it seems like someone else’s problem… it could very easily become something that changes your life, or the life of a loved one, with just one bite.

We do not push for accommodations outside of school. We opt out of a lot of activities, celebrations and birthday parties. I host mot family gatherings because I do not want to burden anyone with her food allergies and I certainly don’t want anyone to feel guilt if they mess up. We have cut and distanced ourselves from many people who just don’t get it and don’t want to. That is our choice. We do have some of the most amazing friends in our lives who go above and beyond to make sure my daughter is safe and I appreciate them so much. For every selfish, bitter and entitled person who have encountered I am thankful that there are a dozen of the opposite in their place. These hurdles have made my daughter a wonderful, empathetic and strong young lady who appreciates genuinely rad people in her life.

It doesn’t take much for one person to consider the life, well being and care of another person over themselves despite the excuses they may have. One act of compassion may be a burden in a moment of time for one person but it is, literally, worth a lifetime for the person who’s life could end.

I hope more people choose compassion over selfishness.

I hope more people choose life over a death cupcake in the classroom.

Thank you for taking the time and stopping by. My daughter reads my blog and has a lot of input on what I write about when it involves her. I do moderate comments that are extremely hateful because she doesn’t need that and this our space. I’m happy to debate and hopefully enlighten. She does appreciate all of the kind words and general awesomeness and we do our best to laugh off the … yanno, other stuff.

Live, laugh and ninja kick. 

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When you have an infant there is nothing more frightening than them being really sick.

It consumes you.

All you want is for them to feel better again.

When their illness goes on for longer than it should you are overwhelmed with worry, guilt and a hint of terror.

How bad can it get? When will my baby recover? What if they don’t?

Don’t ever Google that shit, by the way. Nothing good ever comes from Google when your kid is sick.

Panic sets in at some point between the sniffles and unexplainable symptoms. Your adrenaline kicks in, you feel knots in your stomach form and there are moments of helplessness.

Sometimes all you can do is cry, alone, in the bathroom before facing it all again.

Doctors often say things to make it worse. They mentions possibilities and worst case scenarios. Of course, you focus on those worst case scenarios until the results come back.

Usually, you are sent home with a prescription, some hope and eventually get answers.

You eventually see your baby start to get relief. You see your baby heal. You wake up one day and forget that sinking feeling of despair when you were playing out the worst case scenarios.

The worry fades.

The panic has washed away.

Life goes back to normal.

Life is typical again.

When your chronically ill baby doesn’t have a typical life that worry never fades.

When your baby has life threatening health issues the panic never washes away.

When your definition of normal is living in a constant state of concern and consistent frustration from people who either don’t get it or don’t give a shit you really live for the good moments.

You live for the small bumps in the road in between the devastating ones.

You long for the days where it’s just a cold instead of something worse.

You hold your baby a little tighter, a little longer and a little stronger when you live each day knowing the reality of the pain and finality of the precious life ahead.

I’ve been holding on to mine through the 11 years of her difficult life and all those emotions have never faded, subsided or washed away completely. Our relief is temporary like a small sigh before you have the wind knocked out of you.

People tend to complain a lot online and, naturally, it irks me. There are days where my feeds are full of whinese more than anything positive.

When I hear people complain about their kids having a cold or any of the normal injuries and illnesses in childhood I truly wish they realized how lucky they are. I’m thankful, for them, that their frustrations and concerns are temporary. Sure, I’m even a bit envious.

In some cases where someone is always complaining about their minor illnesses or injuries like it’s the end of the world to get attention I just want to samurai slap them. I’m not a saint, obviously.

The cards we were dealt with supercharge us to make the most out of life. It has shaped me as a mother and molded the young lady my daughter has become. I know this and love our lives as well as where we are now despite the hurdles we ninja kick out of the way.

That doesn’t stop me from knowing I would trade or give anything to have a temporary feeling of worry, panic and annoyance with my child’s illnesses.

So would she.

Random Tidbits: I started writing this months ago when my daughter made an interesting observation about whining about illnesses. She rarely complains when she gets sick. She doesn’t do it for attention and she just wants to hide and get through it. She doesn’t like pity. She told me one day, “How come people who aren’t really that sick complain like they are as sick as I get but I never act like that?” Her and I talked about it in length and she concluded that they must just be very lucky to be able to complain so greatly over such minor things. She is rad like that. 

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No one is perfect.

Not my precocious, sweet natured and mature daughter who has life threatening food allergies.

Not me as a friend or Mom.

Not the seemingly perfect PTA Moms, hottie at the beach, Mom of the year, the people we love, Super Duper Dad and not you.

All we do in life is try to make the best decisions we can and hope for the best. We like to think we have all the answers and that everything we do will turn out right…

and sometimes we make decisions that we know are not the best. We’ve all done it. Pushed the limits a little too far. Broken, sprained or fractured our bodies or hearts.

My daughter is nine and going through that phase I’ve feared since I was pregnant with her: She is transitioning from a the child I’ve always known in to the girl she wants to become and making me want to rip my freaking hair out. It is a crucial part of development and something we all go through.

And it still sucks.

No matter how “right” you raise a child they will push boundaries, go against you and become their own people.

By the way… there is no “right” way to raise a child.

Even the most seemingly perfect parent screws up. We all screw up.

All we can do is just figure it out along the way and hope we don’t screw up too much.

We hope we are doing it “right” even if there isn’t a cookie cutter answer for every situation.

I thought I was raising my daughter in such a way that she would always make the “right” decision when it came to her health and life threatening food allergies. I’ve educated her. She has seen me advocate for her. I’ve given her the tools to take responsibility and ownership of these health issues she faces and been by her side every step of the way. She has been applauded for her amazing ability to manage her health and self advocate.

But, she is still a child who is going through the start of a big phase in her life where she is going to push, test and find herself. This combined with the reality of her health issues, chronic pain and how pissed off she really is that she has to deal with this is harder than I expected.

I’m sad for her most days and angry on the other ones.

I often just cry with her.

The most frequent stories I hear about a child dying from anaphylaxis shock are teenagers who either forget their epi-pens, kiss someone who has consumed food there are allergic to or who push the limits themselves.

When my daughter was an infant I never thought she would be that kind of teenager. I thought… oh I will raise her better than that! I will do it right.

A couple weeks ago she ran from the kitchen projectile vomiting towards the bathroom. It was so sudden. She was screaming. By the time I got to her I could see the hives covering her arms, legs and face. I gave her benadryl and opened her epi-pen.

I knew if her airways started to close I needed to administer it. I knew what to look for. I had no idea what happened, why this was going on or what the next few minutes would bring…

All I knew in that moment was…

My child could die if this got worse.

The arguments we had didn’t seem that bad anymore. The mess in her room that always bothered me were insignificant. Her attitude was something I hoped I’d get again by the end of the day. The recent defiance was now seen in the light of her first steps in being a strong, independent woman…

Holy shit. What if she doesn’t live to be that woman?

When I thought that… well, I honestly cannot explain the pain, fear and rage I felt.

The swelling was minimal, the hives slowly started to fade, her vomiting ceased and she was finally able to tell me what happened.

She had a taste of pudding that she knew had milk in it. Like literally the amount that she picked up on the tip of her finger. Her milk allergy is off the charts so much that she is contact sensitive and she knows that!

Why would she do that?

Many reasons. None of them right or wrong. They just were.

She wanted to know how it tasted. She wanted to know if it was different than her pudding. She wanted to know what it was like to be a kid who could just eat anything. She also had wondered how bad it would be if she ate it… she half wondered if her milk allergy wasn’t as bad anymore since so many others have faded.

She knew it was wrong.

She knew it was a risk

She knew what the consequences could be…

But, she did it anyway.

Fortunately it wasn’t as bad as it could have been. We are both thankful for that.

I was angry at her. I was disappointed in myself. I’ve had so many recent moments with her making terrible decisions like stealing money or just being a little crazy person of ultimate defiance!

I had to really process what happened and why. I actually thought about myself a lot as a teenager and the really dumb things I did. I rebelled more than most do in a lifetime but I was fighting against some dark demons of my childhood… which I didn’t know at the time.

I can’t say that I never put myself in a life threatening situation or did things that could have completely ruined my life. I can’t say that I, as a teen, always made the right decisions or more importantly that I never made a decision I knew was bad.

The disconnect for me is that I didn’t have a life threatening health condition I was rebelling against or chronic illness that I was resentful for. I was just a punk ass kid!

I can’t imagine what I would have done had I been dealt those same cards.

My daughter hated her cards. She hated being different. She hated the comments insensitive adults make or the lack of care or concern she has been shown. She hated that she can’t just be like every other kid. She hated that she gets tired, hurts a lot and doesn’t know what her body will do next.

She hated being who she is… and she didn’t know what to do with that. She had a moment of wondering what if she consumed milk and had no reaction?

She would be a normal kid?

And she wanted that more than anything else.

She was wrong.

She knows that now.

She does love the life she has. She appreciates all that I’ve done for her. She knows she has been able to do more than some of her peers because of the adventures I will take her on. She loves me and all that we do. She isn’t ungrateful… quite the opposite.

She was just mad.

Most kids will come home late. They won’t pick up their rooms when asked. Might not turn in some homework or tell lies. They will talk back. They will say bad things about friends or family. Most kids will do normal rebellious things that we all experience.

But, when you have a child who has some serious life threatening health issues or who deals with chronic pain… they will not only do all those normal things but they will also have moments where they just don’t want to be themselves.

I can’t judge her or be angry at her for her decisions. I know its typical development but something most can’t comprehend if they don’t have a child with special needs. It does scare me. It seriously scares the shit out of me to go through that again… and we probably will in many other ways.

She wanted to have hope to have a normal life… and what she ended up discovering is that despite her health issues and life threatening food allergies she has a very full life. One that she loves.

We got through that hurdle and we will both keep learning from each one of them.

We both walked away with a lot more patience, appreciation and strength.

I also walked away with more gray hairs, possible ulcers and the feeling of my heart falling out of my butt.

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