food allergies

The Ridiculous Things People Say About Food Allergies and How to Deal with It

by Leila on February 22, 2013

Walk a Mile in My Shoes or… Not?

It has been said many times, “No one understands what severe food allergies are like until they experience it themselves.” But, I think it’s more accurate to say that those who don’t understand is because they don’t want to experience it or ever care to. That may seem harsh or mean but if someone cared enough to understand the painful reality of someone else’s path then they would try. 

When my daughter was diagnosed with life threatening food allergies I was prepared to do what was necessary to keep her healthy and safe. What I wasn’t prepared for was the amount of negativity, judgment and asses out there that would, for whatever reason, had to fling their nasty word poo at us like angry entitled monkeys.

That visual? Freaking priceless.

Thankfully, but unfortunately I suppose, I grew up with tough skin and learned at a young age how to deal with people who just like to be mean and feel entitled. It wasn’t something I expected to use to defend my infant, toddler and now ten year old daughter.

I’ve had minor food allergies and eczema since I was a kid and watched my brother, cousins and relatives deal with similar my entire life. At that time, I thought that defined what food allergies were because that was the extend of my experience. No one had life threatening food allergies in my family and I hadn’t heard of an EpiPen until my daughter was a month old. No one I knew could possibly die from anaphylaxis shock if they ate the wrong food… everyone just got uncomfortable when they ate something they shouldn’t have and benadryl fixed it.

So, I get the not understanding something when you don’t experience it first hand. But, is that a valid reason or just an empty excuse to just not care? And regardless of the not knowing or not understanding… why are some people so vile? Why can’t they just be cool or leave it be?

These are not the shoes you expected but you learn to walk in the just the same…

When your life goes from having a vague understanding of something to living the truth of it, everything changes and you don’t usually have time to try to adjust. I wish my daughter did not have the hurdles she constantly faces but it has become a source of strength, resources, humor (we have to laugh about it) and inspiration…

It also became a source of WTF moments and frustrations when it comes to other people and their opinions.

Changing our diet and lifestyle so that it was safe for her seemed like a logical step. Certain foods can kill her so keep those foods away. Simple for us, however, a source of annoyance, judgment and anger for others.

Some of you may be wondering why my daughter’s food allergies are a source of negativity for anyone? Well, I’m still trying to figure that out and I probably won’t ever understand it completely.

I spent many years being angry and resentful towards others who were so wrapped up in their own selfish worlds that they could not have sympathy or compassion for a girl who could die from their death cupcakes. I just accept it now. Okay, I accept it, shake my head and want to shake them but I won’t waste my time on them. No one will listen to what I have to say if they aren’t even willing to hear something other than their own voice.

I won’t just take it from them and I won’t stop advocating for my kids. I have just reached a point where I accept that some people just do not get it or do not want to. This holds true with most topics for people on opposing points of views but to prevent me from getting ranty I will just stay on point with the food allergy thing.

Did you really just say that?!

I have heard ridiculous accusations since becoming a mother of a kid who has life threatening food allergies. I never pretend to be coy in these matters and I’m sure I could handle things better. If someone has the nerve to press my mama bear buttons when it comes to my children or the people I love there is little room to backtrack. On the other hand I do have a deep, yet annoying, understanding that some people just don’t get it and I try to educate rather than berate.

I’ve mentioned on twitter and facebook some of the insanity that people have said and was shocked at how many of my ninjas were shocked at anyone saying these things. It’s become such a sad expected response that when it’s not an issue I’m pleasantly surprised.

So, I decided to make a little list. I’m not going to go into details on who said it or what I said… just some internal monologue for kicks. Yes, these things have been said to me or about us and many of which were said more than once.

People are so rad.

“There is no such thing as food allergies” – Yes, no such thing. There also isn’t a clue in your pea-head.

“No one can die from food allergies” – Absolutely, tell that to the grieving parents, widows and siblings who have lost someone to anaphylaxis shock.

“What did you do when you were pregnant to make her like this” – All I can say to this is that the visuals inside my head were like a scene from Matrix, Game of Thrones and Dragonball Z combined.

“You just need to toughen her up with the food she is allergic to and give her more of it” – Nothing says ‘toughening up’ like angioedema, urticaria and anaphylaxis. People who claim this toughening up nonsense never know what those three words mean and that always proves my point.

“She is making it up for attention” - … What is wrong with people?

“How do you deal with it?” – This one isn’t so bad depending on the situation but I felt it should be mentioned. How do you deal with a child who doesn’t want to go to sleep? A picky eater? A cold? A sudden change of plans? A restaurant not serving your favorite meal anymore? You just do and some handle it better than others. I don’t handle everything the best that I could but I try damn hard to.

“It’s not fair to XYZ to have to go without these things because of her” – Apply this to me, siblings, my family, her classmates… It is said or implied many ways and often. Sometimes it’s much more pointed and accusatory while others it’s honestly innocent or purposely passive aggressive. When it comes down to it, I feel, the priority goes to the person who could lose their LIFE over a decision where others could just be inconvenienced. If it wasn’t my kid who was teetering on that death line the answer would still be the same. Life is always more important than inconvenience.

“Why would you want to have more children who could end up like her?” – I’ve never gotten over this one and probably never will. I hope all my children and the children in our lives “end up like her”. She is kind, strong, funny, social, outgoing, polite and a bit insane (in a good way). Sure, she can be lazy, argumentative, bold and tries to go against me at times… because she is a ten year old going on diva. My daughter isn’t “the allergy kid” or “the one with the autoimmune disease” and never “the sick kid”… she is just my kid. I love her endlessly and unconditionally and when she damages my calm I want to rip my hair out just the same. Yes, it had and has crossed my mind many times what the roll of the dice could be if I had another and I just look at my son who has mild food allergies, mild asthma and mild insanity. He is insane because of his personality not because of an illness. I could have another who could be in his shoes, hers, neither or worse. Regardless, does that mean I shouldn’t raise amazing people or expand my family because there might be a health hurdle or two? If so then how come these same people with that judgmental tone aren’t evaluating their genetic lines and choosing not to breed because of a possible genetic issue? If I birthed another child who had the same, or worse, health hurdles as my ten year old princess of doom, then, we would simply be more prepared. If I knew everything I did then, that I know now, I would have saved myself a lot of sleepless night, tears and gray hairs.

“Don’t you miss (insert food allergen here)” – I would miss her more.

“Isn’t it hard that she isn’t a normal kid?” – If you look at her grades, the mess she tries to hide in her closet, her collection of knick knacks and the music she insists on torturing me with then yes, she is exactly like every other kid. If you look at her health records, diet, supplements and medication then no… I guess not. When she was an infant everyone thought it would be too hard to travel with her. We have been to or through half the states in the US. It was assumed she would not be able to go to school, participate in activities or have a ‘normal’ social life… well, she goes to school (not without hurdles), she is involved in whatever activities she wants (yes, I have to manage, lead or be active in the most of the time) and she has more awesome friends than we are able to juggle on her social calendar. She is a normal kid with some extra stuff thrown in.

Damn them all! Or Damn the Man and Save the Empire!

I could talk to every judgmental, opinionated or downright malicious person who has ever uttered a word of judgment on my daughter or I and explain, in detail, with doctor’s records and proof of everything we go through… but it wouldn’t make a difference. Yes, it’s draining and it sucks to have to deal with so much of it. It hurts, it damages and it causes massive problems. I can’t change the fact that those people will always be there. Some may stop their negativity but there will always be more.

All I can do, and all I can teach her to do, is accept that there are people who will support, understand and accept her and there are those that won’t. We can’t change those that won’t because they don’t want to be anything other than righteous and set in their ways… and that is fine. Let them be. No matter how much proof, struggles or inspiring moments someone won’t see the truth of it if they don’t want to. We can’t waste our time on people who, in the end, won’t reciprocate positives in our lives and only weigh us down. We have to accept them and move forward.

There are exceptions to the rules, of course, and my blog has been a seed for that growth. I’ve had countless emails and messages from those that have been changed or inspired because of what we share and those are moments I absolutely relish.

And on the other hand I have had my fair share of flaming, anger, drama and weirdness. Eh, I prefer to delete those and look at the awesomeness… and yes, sometimes laugh at it. Okay, I laugh at the ridiculousness a lot and make fun of it with my friends. It’s how I deal with things… and it makes me laugh.

I would rather be laughing than fighting pointless battles in a pissing contest of who is right and who is a jackass. I also want my kids to learn to let those things go and be happy no matter what. I will come in and lay a can of whoop ass on the table if I need to in order to protect my kids… but the small battles? It’s just not worth the energy spent. They can either choose to accept and be a positive part of things or kick rocks.

If you find yourself dealing with similar situations, and not just with food allergies, with anything. Just remember, your life is your choice and no one can control that. They can try, but in the end, how you deal with every situation and how you resolve them are up to you. There is a lot of negativity, judgment and jerks in the world and nothing will change that. Just sidestep it, don’t get sucked in. Let it roll off your shoulders the best you can and keep moving forward to find your happiness because it won’t be defined by someone else’s bitterness or judgments.

Even I lose sight of that sometimes and get weighed down by it. Then, I need a reality check and a kick in the ass and remember that life truly is too short to be miserable. I’d rather be laughing, making the most of it and getting through it.

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Chronic Urticaria (Hives) and How My Daughter Deals With It Better Than I

by Leila on January 25, 2013

Post image for Chronic Urticaria (Hives) and How My Daughter Deals With It Better Than I

Chronic Urticaria (Hives)

Earlier I posted a picture of my daughter’s urticaria aka hives on Instagram. It’s not my usual funny faces, nature and random acts of silly I put out there but there was a reason. I got some amazing feedback and a couple people who thought it was wrong I posted it because it made them uncomfortable.

I get that… it makes her uncomfortable too.

It was a mild reaction, thankfully. When I picked up my daughter from school she was her usual happy, brave and optomistic self but I can always see that look of fear behind it all. When the benadryl kicks in her stress levels (and mine) drop. The school secretary always compliments us on how amazing she handles these hurdles. That means the world to me.

These situations are not easy in the slightest. As much as I am freaking out on the inside I deal with it all very matter of fact, with a smile on my face and try to keep her calm. A reaction can go from okay to really bad quickly and we have to be able to deal with it as it comes. Not a situation where I should be losing my shit.

Seriously, I want to run around screaming – freaking out – yelling and fall apart. Hives can turn into anaphylaxis shock and she could die from it. However, I have to be cool. I wasn’t this time. As soon as we got in the car I started crying. She isn’t used to that. I knew she was okay at that point and I explained I was just mostly sad for her. She hasn’t been doing well lately and right when we had a couple of weeks of being on the seemingly upswing this came out of nowhere.

To quote Rory “Pond” from Doctor Who: “Oh god, I was going to be cool. I wanted to be cool. Look at me.”

I actually said that and it made her laugh and broke my moment of uncoolness. I’m so thankful that my daughter loves Doctor Who. She even said “Hey! That is what Rory said in a Good Man Goes to War!” (I am so proud)

Anyway,

She has idiopathic chronic urticaria which basically means she gets hives constantly often from an unknown and unexplanable source… sometimes.

She also has life threatening food allergies, mild arthritis and an autoimmune disease.

Yet, she is the happiest kid you will ever meet and stronger than most adults I know.

When she gets a reaction a few things go through my head. First – is it going to be an anaphylactic reaction? What caused it? How is she feeling emotionally and physically?

We discuss what happened or what may have caused it. I take notes, pictures and write down any pertinent information. We decide what needs to be changed if anything. Then we find a way to distract from the moment while her medicines kick in. If it was a severe reaction we would be off to the emergency room…

Thankfully, it rarely comes to that since we have control over what we can.

But, there is always that wild care with the idiopathic chronic urticaria. We just have to make the most of what we can.

When she had the reaction this week and took the picture for our records she asked me if I would share it online. I hesitated. She explained that most people don’t understand what she goes through until they see it. She knows that I explain what she goes through but it’s different if you see it. She compared it to “reading novels” compared to comic “graphic novels” and how what you picture in your head may not be the way the writer intended.

My ten year old girl is wise beyond her years.

Anytime I talk about her health on my blog she gets full editing rights. She has reached an age where she is taking a big step towards advocating for kids who feel a little different. She is brave, strong and loving… I’m now in a position where I guide her through this and heed caution when needed. It’s honestly beautiful. I sincerely hope that sharing these low moments are insightful. When we share the good moments that we grasp I hope they are inspiring.

Either way… thank you all for being a part of our world of madness.

I am writing an e-book about food allergies (there will be a few of them because it’s a lot to cover) and she is now a big part of the process. It’s always had to do with her story and our struggles but she is giving me so much insight and perspective from her point of view. I love that I can include that. 

 

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Severe Egg Allergy, Food Challenges and Overcoming the Impossible

by Leila on December 4, 2012

Everyone Has Misconceptions About Egg Allergies… Even Me

When I was a kid I knew my brother, some cousins and a few friends had an egg allergy. I remember one of my cousins telling me that she can’t eat a scrambled egg because it will make her skin itch but it can be in baked foods and she is fine.

I thought she was crazy for that.

I had, until recently, mild food allergies my whole life. If I ate too much pork I would get a little itchy. Nothing major. I knew it could be harmful but I hadn’t experienced that first hand.

I always figured that if someone has an allergy to something like eggs then it’s as simple as just not eating them. But, it is much more than that.

How Severe Can An Egg Allergy Really Be?

When my daughter was a month old I nursed her after eating eggs and she broke out in hives and went into anaphylactic shock. I knew she was probably allergic to eggs and maybe other things I ate that day. That moment changed me. I didn’t experience the physical reaction myself but it was a feeling that can’t be erased. That is where our journey from her egg allergy began.

She was an infant and I was on an allergy friendly diet when she was nursing. I picked a few veggies and meats out of a chinese egg noodle dish. I didn’t think the small contact would be an issue. She spent the night in pain and covered in hives. I didn’t make that mistake again and I learned about cross contamination.

I made scrambled eggs when she was a toddler. She was on the other side of the room. They weren’t done cooking and I hadn’t gone near her when she started screaming. She was breaking out in hives and having difficulty breathing. It was her egg allergy. She was so sensitive that the tiny proteins flying through the air were enough to make her break out.

Eggs were no longer cooked in the house.

She ate off a plate and her hives, pain and crying were terrible after that meal. I discovered that the last food on that plate was a breakfast burrito and it just wasn’t washed well.

She snuggled on her grandpa’s bed and watched TV with him when she was five. Her head rested on him. Within an hour she started to scream. Her eye and eyeball had started to swell. I rushed her to the doctor and we were all in shock. We flushed her eye, her benadryl had kicked in and she was fine. Turns out he had eggs and toast for breakfast. We could only assume it was her egg allergy.

I didn’t even know most of these things that happened to her were possible.

When Egg Allergies Change and so Does the Research

My daughter’s egg allergies were off the charts along with milk. They have always been the scare-me-to-freaking-death allergies. The slightest exposure to eggs caused her to have serious reactions.  I couldn’t keep them in the house and dining anywhere that cooked eggs was a risk… I always had to stress to them how important her  egg allergies were.

The reactions were so extreme that people thought I was crazy and making it up. I would simply say screw them but understood that it was something you had to see to understand.

But, I should not ever have to justify the measures that I took to keep her safe. People are going to believe what they want. I can’t change it. Makes me less stressed being able to accept that. I’ve just always wanted to see those allergies drop so they weren’t so scary.

A couple years ago there was a slight drop in her egg allergies. It was very very very slight. But that drop was something I noticed. It didn’t even drop a category but it was the first glimmer of possible hope.

Slowly that egg allergy dropped on her tests. I didn’t even talk about it. I was sure it was going to go back up. We wanted to be sure. Her allergist and immunologist and I had talked about the advancements in Oral Immunotherapy and how they are proving that most people with egg allergies can tolerate eggs in baked goods.

When egg is cooked for at least 30 minutes at a high temperature it breaks down the protein that causes the body to have an allergic reaction. It’s as if the body doesn’t recognize it.

He felt she was now ready to start introducing egg in her diet following strict procedures. Usually, a food challenge would happen in a clinical setting but he was confident we could do this at home since he feels I am educated, capable and trusts I can follow the procedure.

At that moment I told him I wished I sucked at this and he should just make me do the challenge in office. He laughed. We could have but why drag out a 5 hour procedure in the hospital when we have options?

Please do not ever try anything on your own without consulting your doctor. Ever. 

Egg Allergies and Food Challenge aka OMG I WANT TO FREAK OUT BUT CAN’T

I bought organic, free range eggs for the first time in ten years. I placed eggs in my own refrigerator for the first time in ten years. I baked with eggs instead of applesauce. I cracked an egg… which I lost my touch! I had to fish out shells. I was still in paranoid egg allergy mode so I immediately tossed out the egg shells and wiped everything down. I cleaned up every bowl and utensil as I was done with them.

The gluten free brownies went into the oven and I made myself busy.

I was freaking the frack out on the inside but on the outside I was trying to be cool.

I will save all the details of the boring procedure of the food challenge. Needless to say she passed.

SHE FREAKING PASSED.

My daughter ate eggs for the first time in her entire life.

And when it was in the clear and we knew that she was for sure okay. We started to cry. I cried harder. She was crying for joy of all those things she will be able to eat and I was crying for feeling a huge weight lifted off of us.

It will be some time until she can eat a scrambled egg. The egg allergy may go away entirely or it may come back in full force. We just don’t know. Which is why we focus on the here and the now. Right now… it’s freaking amazing to say that her egg allergy is easier to control.

I shared this on facebook and the 125+ likes and dozens of supportive comments meant the world to us. I always show her those supportive responses. To all of you that stop by, read our updates and are a part of this journey we are forever grateful. You all rock and are the reason I share these moments. Thank you for all the awesomeness.

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Life Threatening Food Allergies and Painful Eczema – A Ten Year Journey That Continues

by Leila on December 1, 2012

You Don’t Expect This with your Infant

Food allergies are not unknown to me as I have battled my own minor allergies and watched my brother struggle with her allergies and eczema our entire childhood.

Does anyone ever expect their children to be unhealthy? I think we focus on what will they look like? Who will they take after? Will they have my big feet? Will they love me?

You don’t wonder… will my child be born with a life threatening condition like food allergies? Or will my child’s skin be so sensitive that they bleed, scar and spend days crying in pain?

We know about these things but we don’t really dwell on them. Or, we try not to.

At a month old my daughter broke out in hives and went into anaphylaxis shock from nursing. I was holding my infant and she turned all shades of colors, swelled up and broke out in hives.

I will never forget that terrifying moment.

Figuring Out How to Manage Allergies and Eczema isn’t Easy

I went on a food elimination diet to figure out what she was allergic to. It was over 20 things by the time she was a year old. There was no formula on the market that she wasn’t allergic to so I had to nurse (which was better for her anyway) and I had to be on her diet. Boy was I skinny!

She was so sensitive that if I cooked eggs in the house she would break out. If I touched cheese then touched her then she broke out in hives. If friends came over and sat down on our couch and she sat on it after them she would break out because of the different foods, outdoor allergens or pets they were exposed to. Dyes, caffeine and medicines caused adverse reactions.

It sounds crazy. I felt crazy. Each day presented a new challenge.

She had terrible eczema. The kind where her skin bled and she couldn’t stop scratching. She could only wear cotton. Do you know how hard that was? Organic was preferred but back then it was so expensive. I had to sew gloves and socks to her clothes so she couldn’t get to her skin and scratch them. No matter how hot it was she had to be completely covered. I barely slept when she was an infant and toddler because I would wake up trying to keep her from scratching. She has scars on her legs, feet and arms from her infant eczema. It’s fading over the years and looks like a faint discoloration in areas but it still breaks my heart to see remembering the pain she was constantly in.

Doctors only wanted to pump her full of medicine that would cause long term damage and one even told me that children with these extreme issues don’t often live full lives because there isn’t much that can be done. He said that kids who can’t experience a full life, who spend it isolated also develop depression. Everything out there in the world and everywhere we go is centered around food. It was impossible, he said.

I refused to accept that. I was told these things often. Medicate, give steroids and pump her full of medicine and deal with the long term side effects later.

I saw what traditional medicine did long term and I wanted a solution not a medicine to cover up symptoms. Not an isolated life. All of this just sounded like bullshit.

Not Accepting Limitations and Never Giving Up aka Why I Believe in Ninja Kicking

I wanted to figure out how to let her live a full life where her body could grow without an insane amount of medicines and her to be healthy one day.

I wasn’t told it was impossible just improbable. It was assumed to be too hard.

I studied. I became active on forums and I learned as much as I could. I charted everything she ate, her bowel movements and her sleeping patterns. I was able to determine a soy allergy based on the change in her bowel movements and sleeping patterns before her blood tests came back positive. I realized how much of what we consume directly influences our bodies, mind and temperament. I went through a lot of shit doctors and I, thankfully, found some amazing ones.

I had found an allergist who worked closely with a wellness nutritionist and homeopath. I went into that appointment when she was a toddler expecting to get a mountain of knowledge and direction. Instead, I was given confirmation that exactly what I had discovered on my own was what I needed to do.

Even the supposedly extreme measures that some people thought I was crazy over. Things like not allowing friends to bring food inside my home because my daughter could get sick from it. Or expecting friends to wash their hands when they came over. They thought I was being a bitch and it was all in my head. I don’t miss them.

I found solutions. When I took her to the park I wiped down the swings so there weren’t issues with allergens. I had a blanket that she would use on the slide. We never sat on benches but I always had a picnic blanket. When we went to an amusement park or museum then we avoided food places and I took extra precautions. I just made it work.

If others judge me for my choices all I can ever say is they have no idea what it’s like to be in my shoes. I don’t ever want anyone to pity my journey in motherhood just as I don’t want anyone to feel sorry for my daughter. We are better for it. We are stronger for it. I would not be the same person that I am had I not been down this road and she would not be the same amazing kid she has become. A kid who still has typical flaws like attitude, not cleaning her room and “forgetting” her homework.

Yes, it sucks that anyone has to endure some kind of pain and I would never wish this journey on anyone. I refused to allow it to be a crutch for us no matter how hard or isolating it was. I refused to allow her health hurdles to prevent her from having a life like any other kid. We have accomplished just that to the point where daily considerations over her health are as natural as breathing.

Allergies and Eczema Studies Are Finally Making Progress… And so are my daughter’s

When it comes to allergies and eczema we only have two solutions: Avoid and Suppress. Avoid all your allergens (which actually is easier than you may expect) and suppress the reactions. Those options kind of suck.

Sometimes the body “forgets” it is allergic to something. It is less reactive and on alert. This is part of the way a person will “grow out of” an allergy.

Now there is a new way. Oral Immunotherapy which is basically giving your child a small amount of the food they are allergic to and over time it builds up a tolerance. This study has been done over the years and researches have confirmed this year that egg is among the allergens that are successful in oral immunotherapy.

When eggs are cooked at a high temperature for at least 30 minutes the egg proteins break down so the body doesn’t recognize them as egg proteins.

Over the last few years my daughter’s egg allergy has gone from off the charts high to a category 3 and now a 2. This is amazing. It’s huge. I honestly never thought I would see a drop like this in an allergy that I couldn’t even keep in the house! I never thought we could eat so many different foods together. I didn’t expect her to have so many options. She went from over 20 allergies and slowly started to “grow out” of them over the years. Now she is down to around 5. It always changes and always will and we embrace that. And we enjoy the hell out of the progress!

As we figure out how to control her diet then her general health improves and especially her eczema. I don’t have to smother her in steroid creams. She can wear synthetic fibers in her clothing.

Food. Skin. Asthma. Temperament. My sanity. Food allergies. It’s all connected, but, not in a continuous cycle but more like a finely woven web that depends on each strand to stay strong.

Kid’s who were so allergic to peanuts that they couldn’t be in the same room as them have gone through oral immunotherapy successfully. As the studies continue there are huge improvements with food allergies from when my brother and I were growing up, til ten years ago when I watched my infant break out in hives and swelled up to now.

It makes me hopeful for the future for not only my daughter but all kids who deal with the pain, fear and difficulties both physically and emotionally from food allergies.

She may always have food allergies. She may one day have the freedom to live without fear. Either way we are going to make the most of it, enjoy each moment and be as silly as possible.

Related Posts:

Food Allergies and School Issues

Food Allergies and Girl Scout Cookies

When Your Child Tries to Push the Food Allergies and Limits

When people wish Harm on your child because of food allergies and because they are assholes

When Food Allergies Empower an Independent and Thoughtful Child

How to be cool about food allergies at Birthday Parties

And something really funny about PEANUT allergies <– this will make you laugh. Lots. Give it a read.

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Halloween with Food Allergies: Tips on making the most of it!

by Leila on October 30, 2012

When my daughter was three I was angry about Halloween because it seemed to be a risk for her and most holidays were just designed to be dangerous. Every holiday revolves around food. We sat on our porch and she handed out candy with our neighbors. She was dressed up and had a blast but I was getting really sad about it all. She was missing out. Sure, some may say it’s a stupid holiday and many people are flat out against it but I always loved Halloween.

At one point she realized we weren’t going to each house to get candy. I realized that it was my fear that was preventing this and I had to think of alternatives. I wasn’t going to allow her allergies to hold her back and in that moment I realized how much I wanted her to have a life like any other kid.

Tips On Having a Safe and Fun Halloween with Food Allergies

  • Always have your required medicine. My kids carry an “Emergency Bag” on them at all times. No exceptions. My daughter keeps her epipen, benadryl, inhaler, tissue, emergency cards, wipes and a small first aid kit in her bag. Yes, between the candy sacks, halloween costumes and other stuff your kid seems to haul around it may be tempting to leave medicine at home since you will be in the neighborhood. I always play safe.
  • Eat a big huge meal before you go Trick or Treating. It will be tempting to eat candy on the go on an empty stomach. Lessen the temptation.
  • If you are stressing how to manage your child’s food allergies at a Halloween party then check out this post I did about Birthday parties. Same rules apply. It’s also great for those of you that are hosting a party and have someone coming who has food allergies. I even quoted Pulp Fiction in this one.
  • Get your kids in the habit of always asking before they eat something.
  • Have your kids wear gloves with their costumes. My daughter is contact sensitive to milk… if she touches it she will break out. Some houses want the kids to pick out their candy. To minimize the amount of exposure I’ve always asked them to wear gloves. Just. In. Case. We had one instance where she picked up a candy bar and it was open. Milk chocolate was exposed… if it had touched her bare skin she would have broken out. I switched her gloves and wiped them down. Sure I look like the crazy germaphobe Mom but I’m keeping my kid safe.
  • Homemade treats should be politely declined. I think it’s sweet that some people bake fresh cookies and brownies and sometimes give them straight from a plate. The cop’s daughter in me says “Oh hell no, those could be poisoned” and the allergy Mom in me freaks out. This has happened a few times and I’ve taught my kids to just politely say they can’t have those but it was very sweet for them to offer.
  • Keep it fun. Yes, your child may be gathering dozens of pieces of candy that they can’t have. Let them. It’s about being outside, showing off their costumes and having fun. Have a system where they trade in that candy for something else. Last year I wrote about the Halloween Fairy which is a fun way for kids to trade in their candy. I encourage you to welcome the Halloween Fairy into your home even if your child doesn’t have food allergies… it’s a way to swap out those treats and replace them with a better alternative.

My daughter is ten now and we haven’t missed a trick or treating moment. We haven’t allowed her food allergies to hold us back. We haven’t had any negativity from it… just lots of fun and great memories.

Bonus points if you can guess our theme

If you have other tips or advice I would love to hear them. I hope you and your kiddos can go out there and make the most of it!

 

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When Food Allergies Make Your Child Feel Like an Outcast at School

by Leila on June 12, 2012

Sometimes, no matter what you do for your child with life threatening food allergies, there will be mistakes at School.

Thankfully, nothing physically happened to put her in danger but it was going that direction. This was an emotional attack and broke my daughter’s fragile heart and put me in a lose lose situation.

I totally get that unless you live the life of a person with severe food allergies you don’t get how dangerous it can be physically or emotionally.

I try to advocate, educate, tell funny stories and make it all as positive as possible. Everything is in place at school with her IEP and 504 Plan that gives her legal protection. I keep open communication with the faculty and teachers.

For the most part I am really friendly, laid back and positive about everything. Follow the guidelines and nothing goes wrong and I don’t have to get all crazy.

Though, sometimes things slip through the cracks. Sometimes we have to deal with parents who push their own agendas or teachers not reading the freaking manual.

I personally can’t stand end of year parties and holiday times because it is a source of stress and frustration no matter what alternatives are provided. There is a reason many schools BAN classroom parties. Not just because of the food allergy issue but because it takes away from valuable classroom time and lots of parents don’t want other parents sending their children on a sugar high.

Even if I didn’t have the perspective that I have I wouldn’t want my kid having cupcakes, pizza, candy or junk food all the time. We don’t do that at home for health reasons so why should it be a constant staple at school?

Anyway, a pizza party was decided for my daughter’s classroom. My daughter is contact sensitive to milk. This fact sucks and has been a challenge to control. If she ingests milk or has too much exposure she can go suffer anaphylactic shock which can kill her. This fact, obviously, sucks even more. I thought everything was clear about pizza and ice cream being around her. I thought it was understood what was in her health plan. I can easily provide alternatives and we can do other foods or popsicles. But, no. It was decided and announced that pizza was it.

If you don’t have experience with health plans and IEPs then this may seem confusing. Basically, if a child has any special needs then accommodations need to be legally met so that child can be in a safe learning environment and not fall victim to discrimination.

Everything about this party legally went against what is laid out to prevent her from physical and emotional harm. Still, it was pushed forward. By the time it was told to the parents it was a little too late… the kids knew and were looking forward to it. This worried my daughter because the last thing she wants is for all the kids to be mad at her because of her health conditions. It was a lose lose situation and I watched her cry herself to sleep more than once because of something that could have been prevented.

I just didn’t get why we were dealing with this when we had no issues this year and everything laid out was so simple. Why choose the main food that can put her in harms way?

It started turning into a battle. Some asshair parents started gossiping which got back to my daughter. People can be so selfish, though, they think we are the selfish one.

Yes, blame the child who can’t help the cards she was dealt with. It was suggested I just kept her home. Really? We have dealt with so much negativity and people even wishing harm on her.

You start to reach the boiling point where you think you can’t win and hope in people not being asshairs is lost.

It is pizza. PIZZA! All the kids ultimately care about is they get to party. I wanted peace. I wanted my daughter to finish the school year in a positive note since we have had to face the fact she will be homeschooling soon.

The alternative? Our wonderful Principal, who really understands my daughter’s health issues because of personal connections with it, wanted to just make her happy. We were all worried about pulling the party at this point and kids being upset with her. There was also concern that catty parents would turn it into something bigger… because some people have nothing better to do. We didn’t want her missing school or being put in danger.

The alternative?

My daughter is having a special day with the Principal. They have games, popsicles, allergy friendly cookies, bubbles and all sorts of things planned. She is throwing my daughter a party with the office staff and making her feel special. This is insane to me because everyone is so busy with end of year craziness. The principal insisted that my daughter was more important in these moments and everything else can wait.

We weren’t sure how awesome this would be to a fourth grader but my daughter was elated going to school with her party supplies. She was so happy to be greeted by everyone in the office who were showing genuine excitement to have their own lunch party with her.

When my daughter hugged me goodbye she told me thank you for always helping her find a way. That moments like those make her feel like the luckiest girl to have a Mommy like me and to have days and events where she can feel special and forget about the things that make her different. We try to make the most of each day, no matter what.

I walked away with happy tears and can take comfort in the fact that we are ending this year on a good note.

Though, I do kind of feel bad for the Thor hammer like emails I had to send out advocating for her. However, time and time again I realize that we do have to live, laugh and ninja kick those obstacles and find those happy solutions.

And no one is going to take away my daughter’s choice or right to be safe.

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Being Empowered by Life Threatening Food Allergies and Girl Scout Cookies

by Leila on March 13, 2012

My Daughter's Girl Scout Cookie Monster Outfit Thanks to her Auntie

There were big obstacles in our way to getting my daughter involved in Girl Scouts. My daughter’s health hurdles and life threatening food allergies make it hard to be just another participant so it was best for her that I take a leadership role.

The reality is that expecting others to make the right and fair accommodations for your food allergic child is unrealistic. Sometimes you have to just get shit done yourself and that is how we roll…

In case you didn’t know… Being a Troop Leader is a crapton of work! However, it is very rewarding. Sure, there are a lot of headaches and stressful situations along the way but it balances out. I am able to ensure that there is no exclusion for my daughter within her own Troop and that all activities are safe for her. We, thankfully, have amazing families who totally get how unpredictable things become for us.

The other concern I had was product sales since it seemed cruel to ask her to sell something that could potentially kill her.

There was still the issue of fundraising by selling foods that can harm her. Not participating in sales means the Troop loses out on important funding for all the projects they want to tackle. It is also a wonderful introduction to business and what being an entrepreneur is like.

She always had the option to not participate in Fall Product Sales (Nuts and Magazines) and Cookie sales in the Spring. I explained the dialog to expect when selling and we discussed how it could make her feel. Most people will ask a Girl Scout what their favorite cookies are… but what if you can’t eat it? Is that question going to jab at her young heart?

She decided early on that she wanted to sell with her Troop because it would help. It was a huge hurdle for her and a very hard decision. She hasn’t been without painful moments and awkward times where she can’t relate to the people who love the cookies she sells. Those negatives are far outweighed by her determination and the happiness she gets from meeting her goals.

She works her butt off. She tries her hardest. She feels empowered and she finds her own ways of dealing with the obstacles in a positive way.

Last year her efforts paid off and she was able to get in to the 500 Club. She donated her incentives to the local Children’s Hospital since she saw the 500 Club Party and accomplishments as her reward. It was a fun day for her and I to spend with other Girl Scouts at a huge outdoor party.

She knows that by participating in Girl Scout Cookie sales that she is making a difference. She is driven not only by her goal setting but by the money raised funds our community service projects.

Her favorite thing to say to customers is “Thank you for helping me make a difference.”

I’m very proud of her and had expected some of this determination to lose it’s hype. It’s only intensified. This year her health is more challenging and she is more fatigued than usual with a lot of gastrointestinal issues but she is powering through it. She has her regular supporters that are happy to help her in her cause.

And while her determination creates a ton more work both as a Leader and a Mom I am happy to be right by her side and cheering her on.

Even if my living room looks like this during Cookie Season.

 

 

 

 

 

 

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Diet Changes for Food Allergies, Autoimmune Diseases and Why My Kid is Tough

by Leila on February 10, 2012

Post image for Diet Changes for Food Allergies, Autoimmune Diseases and Why My Kid is Tough


This week we went to UCLA Medical to try to get some answers for my daughter’s recent autoimmune flare ups. We have some new directions… but no solid answers.

That’s the thing with chronic illnesses and autoimmune issues. Sometimes there are no answers.

We know what is going on with her body but we don’t know why.

And that is the part that sucks.

Without knowing why we can’t know how to fix it.

So, we shoot in the dark.

What we do know is that there is something causing extreme constipation and then extreme diarrhea. Her chronic urticaria (hives) are flaring up again. Her muscles, joints and bones ache. She is getting dizzy a lot, fatigued, doubled over in pain and sleeps a lot more than usual.

Not exactly what a nine year old girl is supposed to be experiencing. [click to continue…]

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Selflessness and Seizing the Moments with Childhood Chronic Illness

by Leila on February 9, 2012

Post image for Selflessness and Seizing the Moments with Childhood Chronic Illness

When you have a child who has chronic illness and chronic pains it breaks your heart to hear her utter, “I’ll be fine. I’m just sad if anyone misses out because I’m always sick.”

My daughter told me that twice last week… and her being so selfless and worrying about others when she is missing out on something amazing is truly eye opening.

For the first year my daughter was planning on participating in the school’s Talent Show. She worked her little butt off for this. Every year we participate in Ondo Dancing in the Japanese Obon Festivals with friends. It’s a big part of our summer kick off traditions. She loves Ondo! She decided with two of her friends to perform the dances for their school while dressed up in Yukata.

This was a big deal for her. It was the first time we committed to this event because it sucks when she can’t follow through when she has flare ups.

It’s always so unpredictable.

At first I thought it was a gnarly stomach flu that was going to beat us all up for a day. No, it was a gastro intestinal issue that is common for her but this was really bad.

She was in so much pain that walking hurt, she was getting dizzy spells and extremely fatigued.

Her biggest concern was not being there for her friends or if the performance wasn’t going to go as smoothly with one missing. She wasn’t sad for herself for missing out. She was sad for letting them down and any upset that could cause them.

On Saturday I was invited back for a Blogger event at Knotts Berry Farm which is one of our favorite places to go. When my daughter realized that she wasn’t going to feel up to it she began to worry that I wouldn’t be able to go because of her.

I do not make a big deal out of things changing or express upset over it. I’ve canceled night’s out, family gatherings, playdates, work obligations and many many things when she needs me and we make the most of it.

It’s just how our life is and her health comes first.

It’s just me here for her and I’d rather be here for my daughter than anything else. That is what we both need.

She insisted that I went. The plan was for her little brother and I to go and she would sleep in and meet up with us later with a friend if she was able. I knew if she was able that we would need to take it easy and go at her pace.

She made it for a few hours and we made the most of it. She is a trooper. She powers through things that most can’t and I am proud of her for that as well as thankful that she knows her limits.

Maybe I seem like a terrible Mom to let my kid go to an amusement park after days of feeling ill. But, it’s not a cold. It’s not something that is going to go away. This is her body and a cycle we adjust to. She can go weeks of feeling wonderful and then weeks of feeling horrible.

Sometimes her windows of feeling great are a couple hours.

She had that window on Sunday and it was a beautiful day. She just wanted to be out in the sunshine and garden.  I love that she embraced that moment.

In those windows of feeling amazing I want her to do what makes her heart soar and forget, just for a moment, that she gets sick.

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Holiday Comforts, Thanksgiving Traditions and Food Allergies

by Leila on November 21, 2011

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Thanksgiving is a time for family, comfort, traditions, appreciation and food. It has a LOT to do with food! It is a time to feast, enjoy and then plan to lose the weight after the holidays.

But, what about those that can’t feast and enjoy?

What about those that can’t enjoy the foods that can be fatal to them?

Thanksgiving used to be a very stressful time for me because of my daughters life threatening food allergies. Some years we just didn’t see family or friends and did our own thing. We made the most of it but there was still that family dynamic missing. Other years we would go and I would bring her own food with dishes she can have but there would still be lot of stress involved with that. She has contact sensitivities and there are concerns over cross contamination. There was just no comfortable solution.

Food allergies run wild in my family so it’s not just my daughter who has limitations. There are six immediate family members with different dietary needs; different food allergies, diabetes and a vegetarian. This stressed my Grandma out and there is also a language barrier… as she gets older she forgets English and speaks more Japanese. All of this caused a lot of stress on everyone.

My Obachan (aka Grandma) is the host with the most. Her food is amazing and she has always handled feeding large groups of big eaters without complaint and with lots of love. She loves getting the family together, cooking for everyone so they can enjoy themselves and she can love providing that.

I’ve inherited this from her.

I took over the family traditions a few years ago and wasn’t sure how that would go since I am still the young oddball in the family. This was a huge transition because we have done the same thing since before I was born. Traditions are comforting and changing things up can make everyone uneasy.

I’m also the only one in the family that cooks so no one else was going to step up!

Unless they were just going to order Chinese food and pizza.

Better Than Chinese Food and Pizza!

I was determined to make it amazing, delicious and safe for everyone. The work involved is nothing compared to the comfort I have knowing that my kids can eat everything there. The stress over wondering who can eat what isn’t even an issue anymore. We can focus on playing games on the wii, Nerf battles and enjoy our time together.

Holiday comforts mean something completely different to me now. It means to feast without fear, no one is excluded and everyone is together. I can take comfort in the fact that my Obachan is very proud of me for doing what she started and can now relax.

And all of this put me in the lead spot for the favorite in the family and those bragging rights are priceless!

 

I'm a giant in the family BTW!

Comfort is the perfect gift for everyone on your holiday gift list, so be sure to take advantage of Tempur-Pedic’s Buy 2, get 1 free pillow offer! I was selected for this sponsorship by the Clever Girls Collective.

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