A Food Allergy Mom’s Plea

Kids are dying from food allergies.

People are dying from food allergies.

Kids are being bullied about food allergies.

A kid died last week from possible food allergy bullying.

People are being removed from planes due to food allergies.

People are being discriminated against due to food allergies.

Your child can develop food allergies.

You can develop food allergies.

Is that the only point at which you will care?

Is that the only way you will wake up and finally listen to our pleas?

My son developed food allergies to nuts when he was 4 years old. I found out after he took a bite of a brownie topped with pecans. He immediately vomited and got hives and eczema rashes on his body and was rushed to the ER. He never had food allergies before that day. He is 6 now and will always have them, unless a cure is found.

Our lives are very different now. I must consider all of the possible things that may harm him on a daily basis. Things that don’t just involve food. Things like shampoos, lotions, mulch, art/science experiments, and dentist appointments.

It is an overwhelming task at times because there is so much to learn and I often think – what if I make a mistake?

A mistake that could cost him his life?

Can you imagine the heavy burden that is to carry?

The answer is no. You have no possible idea. Until it happens to you.

And it may. One out of thirteen kids has food allergies. One of these kids could be yours.

My son cannot eat at an ice cream shop. He cannot eat at a bakery. In fact, he has never been to a bakery. He cannot go to a majority of restaurants. He cannot eat anything at his friend’s birthday parties. He has to sit at the end of the lunch table at school, separated from his closest friends. He has to avoid nut filled baseball games and nut filled airplanes. He can only eat what I cook for him, or what products I have researched painstakingly to be safe.

He has to live with the fear of dying from eating the wrong thing on a daily basis.

We must all eat. We are constantly surrounded by food. Food is a part of every celebration, it is meant to be joyful.

But, for many with food allergies it is not completely joyful. It is joy mixed with some sadness, fear, and anxiety. You cannot eat whatever you want. You cannot eat wherever you want. You must plan your life, career and vacation time around your food allergies.

Unless you are surrounded by people who care, people who make sure that the allergen that can kill you is not nearby or in your food, you may feel scared and let down.

Let down by a society that thinks it is okay to joke about life-threatening food allergies. A society that often gets the facts or information about food allergies wrong. A society where online bullying or in person bullying by adults, often leads to children bullying other children about food allergies.

Every nasty or uncompassionate comment you make, or action you take, may be seen or heard by your children or other children. Children who may then think it’s okay to make fun of the kid at school with milk, wheat or nut allergies, or to throw nuts at the food allergy kid on the bus, or to smear peanut butter all over the doors or local playground (which happened in my community in Virginia.)

Kids are like sponges. They soak up a lot of information on a daily basis. Why not try to make the information factual and full of good intent? Especially when that information can potentially be used to harm others.

That information is being used to harm others. Many children don’t realize that their actions in bullying can lead to hospitalization or death, as is the case with food allergies. Throwing an allergen at a kid, or wiping it on a surface they will touch, or giving them something to eat that you know has their allergen, can injure or kill a child. These actions can also lead to expulsion or criminal charges. Such as in the tragic case of Karan Cheema who died at 13 years old last week in London. Another 13 year old boy was arrested on suspicion of attempted murder. The case is currently under investigation.

Everyone who deals with, influences or has children must make sure that they know that food allergies can be fatal, and are no laughing matter. They must be told that auto-injectors do not always stop anaphylaxis, especially if there is a delay in administering the life-saving medication. They must provide them with the proper information, such as from Food Allergy Research & Education.

This includes teachers, principals, coaches, doctors, priests, daycare providers, and the media and entertainment industry.

What kind of example does one who jokes about, or bully, someone online or in person due to food allergies set?

Do they realize that they can be putting someone’s life in jeopardy? Do they realize that they are bullying someone with a hidden disability? A disability that they were either born with or developed, through no fault of their own?

It is not okay to bully or harm people with disabilities. It is not okay to bully or harm anyone.

My plea is for anyone who has food allergies, or who has children, or who influences children, or who has any type of media platform. Please use your knowledge, words, actions and celebrity to teach others, and to help those with food allergies lead an enriched, safer life.

If you have food allergies- talk about it. Let everyone know the facts and how they can help.

If you know someone with food allergies- discuss it, and let them know you care and want to assist them in anyway you can.

If you have a bigger platform- use it. Let others know that you have food allergies too and/or about the dangers of food allergy bullying and misinformation. Spread awareness in a way that most of us without fans or followers cannot.

If all of us come together to help those with food allergies it will make a huge difference.

It will save lives, it will stop the sad cries. The cries of the children who are being bullied or excluded. The cries of the millions of food allergy parents who want to be seen, heard and understood.

The cries of the parents who want their children to be happy and survive a life with food allergies.

Parents like me, who want their children to live in a better, more compassionate world.

It all starts with you. It all starts with what you do or say. What you project onto others. What you put out into the world. What difference you want to make.

Won’t you please help us?

Kathy ❤

Nuts About My Son/Poetologie

 

 

 

 

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A Food Allergy Mom’s Mistake

Last April, while on a short spring break vacation to Hershey, PA, I made a mistake. A mistake that I don’t usually make. One that could’ve sent my six year old son to the hospital, or worse to an early grave.

My son was diagnosed with life-threatening food allergies at the age of four. He must avoid all nuts and Stevia to be safe. He also has environmental allergies, and asthma which further complicates things.

Now given this information you may think that it wouldn’t be a good idea to take him to Hershey’s Chocolate World in Pennsylvania. But as I became informed about food allergies, I realized that I could not keep my son in a bubble. He must live his life and enjoy the wonderful things life has to offer.

We have been going to Hershey, PA since my son was a baby. It is like a second home to us. It is our place for fun and relaxation, and family time. When we learned that our son had life-threatening food allergies to all nuts, we panicked. We also thought that we would never be able to go back to our favorite vacation destination. A destination that is filled with chocolate and nuts.

We slowly learned that we can keep him safe there thanks to the chefs at the Hershey Lodge and Hershey Hotel, and the food management team at Hershey Park. Whenever we go away we have these six basic rules:

  1. Always bring the Epipen auto-injectors everywhere we go. We keep them at room temperature to ensure their efficacy. We bring back up Epipen two-packs in case anything goes wrong, or in case more are needed in an emergency.
  2. Always wash my son’s hands before he eats. If we can’t get to a sink quickly, we use baby wipes which are effective in removing allergens. Hand sanitizing gel does not remove allergens.
  3. Make sure he knows not to eat anything that we do not give him. We read ALL labels of food that we give him, and do extensive research before eating out/trying new foods. This includes all food samples.
  4. We try to wipe down his table before he eats, or put down napkins under his food.
  5. We tell him often to try to keep his hands out of his mouth, nose and eyes to avoid contact with allergens.
  6. We only stay at places which are in close proximity to a hospital, with a quick ambulance response time.

We have been living by these basic rules for years now, and so far we have kept him safe.

I am especially vigilant when it comes to his food allergies because I have a food allergy myself, and almost died from anaphylactic shock after eating shellfish at the age of 28. I know what it feels like when your throat begins to close, and you feel death approaching rapidly. I also know what it feels like when the epinephrine starts to work, and you are able to breathe again.

I never want my son to go through that, so I do the best I can to try to keep him safe.

I sometimes fail though because I am only human.

I failed as an advocate for my son last week at Hershey’s Chocolate World. When we go there we always avoid the chocolate making activities, and always tell our son to say no thank you to any offered treats or samples.

After the fun free ride that takes you through the chocolate making  process, they always offer a free sample of chocolate. I always tell them no thank you on behalf of my son, and am teaching him to do the same. This time after I said “no thank you he has nut allergies,” the nice woman offered him a Twizzler instead. I know from experience that Twizzlers in a box or package from Hershey are safe, but that different sizes or samples are not. For some reason, maybe because I was all caught up in the vacation fun, I took one for him. I wanted him to have something and I momentarily forgot my rules.

As I stood there watching him take a bite, I realized what I had done, but it was too late. He took a bite of the Twizzler, then immediately spit it out because he didn’t like it. It was old or spoiled or something. Moments later he complained of his mouth feeling strange and his belly hurting- both of which are classics signs of a food allergy reaction.

I felt panic start to set in as my heart raced. I had tears in my eyes as I realized what I had done. I felt like the worst mom in the world, but I had to keep it together for my son.

I told my husband that we had to sit him down on a bench and watch him closely for awhile, Epipens in hand. We monitored his breathing, checked for any hives or tongue swelling. We made sure he was not acting strangely or panicking.

He said he could not get the bad taste out of his mouth so we gave him some apple juice. That seemed to help.

After fifteen minutes he seemed fine so we breathed a sigh of relief, though we weren’t totally out of the woods. A reaction could take hours to occur. And biphasic reactions could happen days later.

I kissed his cheek and gave him a big hug, then kept him close the rest of the day.

My baby was safe and all was right with the world.

I had to forgive myself though, and quickly get back in the game. The game of keeping my child safe, while educating him how to keep himself safe. The game that we are always playing, even while on vacation.

The game that never ends with food allergies.

The game we must win.

 

 

Food Allergy Wars

“In a dark place we find ourselves, and a little more knowledge lights our way.”  – Yoda

There is a secret, or not so secret, war going on between people who have food allergies and people who don’t.

Some of us who have children with food allergies have no choice but to be involved. We must win this war, because the alternative is unthinkable. The alternative is our child dying from eating regular food that their bodies treat as poison.

We don’t want to be at war with people, but we will be if necessary. We have to protect our children from life-threatening allergic reactions. We did not choose this path, but we must tread it carefully. The force is strong with us food allergy moms.

Most people are kind and understanding, but there are some out there who either don’t believe that children/people are dying from food allergies, or don’t really care because it doesn’t affect them. They represent the dark side of food allergies.

I will tell them to take a look at this list then get back to me. This list is real and heartbreaking, and doesn’t even contain all those we have lost to food allergies worldwide:

http://nonutsmomsgroup.weebly.com/blog/remembering-those-we-have-lost-to-food-allergies

I have seen a few of these types of unkind people roll their eyes at me, or walk away when I’m discussing food allergies. I have read online comments on my blogs saying that maybe my son isn’t meant to survive if a nut can take him out.

Those types of comments are why we sometimes get angry. They are completely ignorant and devoid of any compassion. How could anyone want a child to die from a food allergy reaction? Why wouldn’t anyone do all they can to try to prevent this?

These types of comments or encounters put us in defensive mode. We never know what type of person we will encounter. We never know if those around our children will put their lives at risk without a second thought. Or if someone will instead offer their friendship and assistance in keeping our precious children alive.

Some of us also have children with no food allergies. I have a daughter who so far is fine. But, I know that could change any day. I didn’t become allergic to shellfish until I was 28 years old. I don’t worry about my daughter as much at school, etc because I know that she isn’t surrounded by food that can kill her. And though I still worry, it isn’t a constant fear like with my son. He cannot live a food free existence.

Some parents who don’t have kids with food allergies also get defensive right away. They think “who the hell are you to tell me what my kid can eat?” or “why do you have to ruin things/events/celebrations for all of the other kids?” I can understand having lots of questions concerning food allergies, and wondering why food has to be banned from classrooms, because my son wasn’t allergic to nuts until the age of 4.

What I cannot understand is why upon learning a child can die from food or food residue, some people get hostile and mean. Some people tell and share cruel jokes, and bully food allergy kids and their parents. Certain schools, airlines and sporting/entertainment venues have no consideration for those with food allergies.

This would not be acceptable for any other life-threatening condition or disease. So why is it okay concerning food allergies?

Are our children’s lives less important?

The answer is no. And if any moms were in our shoes, they would feel the same and do all they could to protect their child from harm. Unfortunately what harms our kids is certain foods that are everywhere, so we require help and understanding.

The force of good and trying to keep our children secure should be with all of us.

I promise you that I will do whatever I can to help keep your child safe. If you tell me that your child is allergic to bees- I will stand in front of them before I let them get stung. If you tell me your child runs out into the street a lot- I will keep an eye on them to make sure this doesn’t happen when I’m around. If a dangerous dog approaches, I will shield your child. If your child reaches for poison, I will quickly take it from their hands. The list goes on and on.

Why won’t some people do the same for me or my child? Why don’t they care about the lives of the 1 out of 13 children who have life-threatening food allergies? Why won’t they help to ease the burden of the millions of food allergy moms out there who are terrified of losing their children? Why won’t they at least listen or try to educate themselves about food allergies before pointing their fingers and rolling their eyes?

Seriously, why won’t they try to help instead of hurt us and our children? Please let me know, because I cannot think of one good reason.

Maybe these parents do not know all the facts, and how even a few particles of peanut or tree nut dust can harm or kill a child if ingested. They do not know that ingestion of an allergen like milk or egg can include just a little bite.

All they have to do is ask. All they have to do is believe us when we tell them our child’s lives are at stake.

I can’t imagine why they wouldn’t. If a parent walks up to me and says please put that away, or don’t eat it on the plane because it can kill my child- I’ll say sure, no problem. I’d say it now and I’ve said it before my child had food allergies.

It’s called common sense and decency. It’s caring about others, not just ourselves. It’s about not wanting a child to die. It’s about protecting children from harm.

That is what we all must focus on. The fact that children are dying from food allergies, and being rushed to hospitals every 3 minutes due to severe reactions.

So, let’s all put our preconceived notions and lack of information aside, and focus on helping children who have to live with food allergies day in and day out.

They desperately need our help. And a more compassionate/civilized society is their only hope.

 

 

Thank You To Anyone Who Has Helped My Child with Food Allergies

Food Allergy Awareness Week is May 14th – May 20th. I’ve been thinking a lot about how far we’ve come in regards to my son’s food allergies. We made it two years without any major food allergy reactions. (knocks on wood.) My six year old child is alive and thriving. He has learned so much, and continues to get used to his life with food allergies. And we have you to thank for it.

To anyone who has helped my child with food allergies,

Some of you have children with food allergies, or have them yourselves. Some of you have relatives or friends with food allergies. Some of you have students or co-workers with food allergies. Some of you teach my child. Some of you feed my child. Some of you come into contact with my child. Some of you don’t even know my child.

But, all of you have made a difference in our lives.

You understand that a child’s life is literally at stake. You understand our burden. You understand how difficult it is to navigate this allergen filled life. You don’t laugh at cruel food allergy jokes or comments. You speak up when our children, or any children are bullied.

You show you care on many days, in a million different ways.

You keep my son’s allergens, which are all nuts, away from him. You don’t offer him food drinks, or candy. You wash your hands when you enter our home. You respect our wishes and needs. You always try to help keep him safe.

You watch him closely at school. You keep an eye on him while he’s on the playground. You send me food allergy articles and video links. You pray for a cure, while donating to organizations who are trying to find one.

You give us hope.

You choose to walk with us on this difficult and sometimes scary road because you know we would do the same for your child. You know that the health and welfare of a child is of utmost importance, and that not eating certain foods to keep a child safe is a very small sacrifice to make. A sacrifice that you choose to make each and every time because you know that my child’s life is more important than a bag of nuts, or whichever allergen could hurt him or some other child. You know that he is still learning how to live with food allergies, and that a kindergartner needs a lot of help to stay healthy and make good decisions.

You don’t roll your eyes at us, or make disparaging online comments about those with food allergies, because you have the intelligence and depth to know that we did not choose this life. You know that anyone can get food allergies at any point in their lives. Fifteen million Americans currently have food allergies and millions more worldwide have them. You know this, and have learned the symptoms and how to use an epinephrine auto-injector.

You have seen the hundreds of pictures of the innocent children who have died from food allergies. You know that I carry these children with me each and every day, and hope that my child does not suffer the same fate.

You know that my son had his first anaphylactic reaction at the age of four, you know how scared I was and continue to be. You know how I watched his face turn blue, and saw him struggle for air, during other reactions which were exacerbated by his asthma. You know those memories haunt me daily.

You know that when I look at my son I still see a little baby. A baby created by love, a baby who I will always love. A baby who I will always protect no matter how old he is. A baby I cradled in my arms, a baby who is now a little boy.

A boy who happens to have food allergies. A boy that any mom would do anything to protect if he were her own.

Thank you for being able to put yourself in my shoes and realize that my son’s life is as precious as your own child’s life.

You know that I will do anything I can to protect your child, my son’s friends and schoolmates, and all children.

Thank you from the bottom of my heart for helping my child with food allergies.

I am forever grateful for wonderful people like you. May my child always be surrounded by such love.

May that love follow him wherever he goes.

 

Sincerely,

A Mom Who is Nuts About Her Son

Ryan happy face arms

 

 

 

 

 

A Food Allergy Mom’s Dream

I lay here, weeks before major surgery, worried what would happen to my kids if something goes terribly wrong. My husband is wonderful and quite capable, but they need their Mama, their Food Allergy Warrior. I have trouble drifting off to sleep. I dream of a good outcome. I dream of hugging my children after surgery, letting them know everything will be okay.

My kids both have life threatening food allergies. I don’t just worry about the normal things parents worry about. I worry every single time they eat or drink something. That’s every single day. Every single bite. Every single sip.

It’s an endless fear and anxiety that you face, an endless fight to figure out how to keep them safe. A fight, like many others, that you cannot possibly understand unless you are going through it yourself.

I also have food allergies, as does my husband, but we never took them seriously until our precious children got them. You learn to adapt and educate yourself very quickly when your children’s lives are at stake.

You are surprised to learn that only a very small amount of their allergen can kill them.

Now let that sink in.

A few tiny particles of food can kill your child.

How would you feel if you got this news?

It is a daily battle of preparing many homemade foods, reading labels, calling food companies to verify whether or not cross-contamination exists in their factories, making sure your kids are included and safe, and protecting them from the bullies (adult and child) that they may encounter in person or online.

It is a battle I wish we did not face. It is a battle that I wish none of you will face. But, the reality is that many of you will someday. One in thirteen children currently have food allergies. It is a growing epidemic. One we all need to participate in and be prepared for.

Even with the prevalence of food allergies, many still do not understand the dangers involved, or do not even care to try to.

Because it does not affect them.

Many people do not realize that many kids/people are dying from this. Many kids/people are being rushed to the hospital every single day due to food allergies.

Many still view food allergies as something that is okay to make jokes about. They ridicule those afflicted, or even bully children or the parents of kids who suffer. Food allergies are a hidden disability that affect a person’s ability to eat, drink, breathe, thrive and survive. It is NOT something to joke about.

I worry about the struggles my children will face trying to stay alive every single day when there are so many things that could harm them. Everyday things such as food, drinks, lotions, shampoos, peanuts or other nuts on airplanes and at events/parties, even dental visits could wind up becoming life-threatening due to certain hidden ingredients.

I haven’t had enough time to educate my young children as to how to stay safe. As I prepare to have surgery, I pray that I will get more time to continue that education. I pray that I will be able to supply them with enough knowledge to lead healthy, productive and happy lives.

I also hope that anyone reading this will try to put themselves in my shoes.

What would you do to keep your children safe?

I believe the answer would be- ANYTHING!

So please understand that food allergies are real, serious, and life-threatening. Food allergy families are only trying to protect their children from harm.

Be compassionate and helpful to these parents, and to any parents handling any type of disability or struggle.

Teach your children that bullying because someone has food allergies, or for any other reason, is unacceptable.

Lead by example.

Do not bully or joke about those with food allergies or other disabilities, and maybe your children will grow up to be kind, empathetic people.

It all starts with you and how you treat people. Treat them well.

Remember that we are all in this together. We are all struggling with something.

As I prepare to have surgery, I pray that this message will reach many.

I pray that my children will survive and thrive no matter what happens.

I pray that I will be okay and wake up from anesthesia to a more tolerant and humane world.

Please help this dream become a reality.

 

There’s No Place Like a Food Allergy Community

The week of May 14th – May 20th is Food Allergy Awareness Week. There is no better week to express my thanks to the food allergy community and all the wonderful people who support them/us. Please help me by sharing this letter with anyone you know who has food allergies, or with anyone who has helped you in your food allergy journey. Let’s spread thanks, let’s spread awareness:

To all involved in the food allergy community:

I discovered that I had life-threatening food allergies after eating a huge plate of shrimp scampi. I was 28 and had eaten shellfish my whole life. Until this point, I was fine. Then I wasn’t. I haven’t eaten shellfish since.

Despite all of this, I did not become a full-fledged, all-in, member of your community until my 4 year old son reacted after eating pecan brownies. I knew a little about food allergies and about how deadly then can be, but nothing can prepare you for seeing your small child react. As his hives increased, so did my panic. After he threw up, we knew he must get to a hospital fast.

I was one of the lucky ones, I survived my anaphylactic event. So did my son.

Would we be so lucky next time? IF there is a next time? 

If only I had a crystal ball.

That’s where all of you came in. I sought advice from friends on Facebook right away. I was desperate and needed answers fast. I wanted to know what I could feed my son safely before his allergist appointment which was weeks away.

You certainly came through. You pointed me to the Food Allergy Research and Education website, and to a few wonderful Facebook groups for food allergies such as No Nuts Moms Support Group.

Thanks to your input and knowledge I was able to find these resources and do a lot of reading. I was able to ask a lot of questions about being a beginner mom of a child with food allergies.

I was able to start my long journey down the teal brick road. But I was no longer alone. I had some friends with me. Some friends who had more brains than thousands of scarecrows with a degree, more courage than a hundred fierce lions, and more heart than the most loving tin man in the world.

I took my first steps with trepidation. I had a lot on my mind, I had a son to protect and a Wizard to find. I found some safe lollipops via the Spangler Candy Company. They would be the envy of the Lollipop Guild, and they welcomed us into Food Allergy Land. Then I found some great books, and some nice Kyle Dine tunes that would help my little boy have sweet dreams just like the Lullaby League.

Some lovely women/people on the net act as kind Fairy Godmothers, they are as generous as Glinda, and offer so many words of wisdom. They helped me keep on the right road, they steered me away from the flying monkeys.

The road of a food allergy mom/family is full of struggles, it is never easy. You taught me how to call companies to make sure the food my son consumes is safe, because each company is the horse of a different color. Each of them operate differently, each of them follow their own rules. You taught me to never leave home without our EpiPens or auto-injectors.

From time to time I encounter some wicked witches. The types of people who do not try to understand, or who refuse to acknowledge the fact that people are dying from food allergies. These people are a part of the haunted forest, they taunt you, they mock you, they care nothing about keeping our children safe. Some have said that peanut butter sandwiches, or nuts on planes are worth more than my child’s life, or that he is not meant to survive if a mere nut could take him out. Almira Gulch has nothing on these people, and they are swept up in a tornado of hate. I can only hope and pray that they do not get food allergies, and that they may see the light someday. May this light pour some water over the witch, and throw the broom into a ditch.

You help me gain peace and balance after such unpleasant encounters.

You are my rainbow.

I thank you for all the information you have given me, for all the tears, for all the smiles, for the bond that only food allergy families understand. I also want to thank those family members, educators and friends who are a part of our community and everyday lives. You care so much about us and our children. You walk this road with us voluntarily. There are no better people than you.

You have helped me keep my son safe for over a year now. There is no way I can ever repay you or thank you enough.

You are always in my thoughts and prayers. You are all in my Hall of Fame.

There’s no place like a Food Allergy Community.

There’s no one like you.

Thank you for making my skies blue again….

ryan great wolf lodge lollipop couch

 

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You can find more information here:

https://www.foodallergy.org/

https://www.facebook.com/nonutsmomsgroup

http://www.kyledine.com/

http://www.kidswithfoodallergies.org/

http://www.foodallergyawareness.org/

 

 

I Was a St. Paddy’s Day Failure Yesterday

I was a St. Paddy’s Day failure yesterday. I imagined a hash and egg Irish breakfast, corned beef or ham and cabbage with potatoes, parades, Irish music, making vanilla cupcakes with green frosting, and watching Darby O’Gill & The Little People.

I did not check anything off the above list!

The only thing I pulled off was having the whole family wear green shirts. This photo is of my 2 kids.

I slept late, took my family to a restaurant that didn’t even serve corned beef or play any Irish music, and failed to make or find a safe dessert for my son with food allergies. But we did have a Happy St. Paddy’s Day toast with milk & apple juice! 🙂

I was a disgrace to my Irish ancestry & spirit of revelry, so when I got home I made up for it by toasting my failure with some Bailey’s Irish Cream.

I quickly forgave myself after a few sips, and began dreaming about how next year I’ll be the Martha Stewart of St. Paddy’s Day.

Oh, now that’s some Blarney!

Kathy
Nuts About My Partially Irish Son & Family

O’Poetologie