The Emotional Evolution of a Food Allergy Mom



My first and only child was diagnosed with an anaphylactic dairy allergy at 4 months old.  This discovery was made on a Sunday evening while I was home alone. I had no idea what was happening to my baby and there really wasn’t enough time for the fear to set in.


After a few days in the NICU, and many consultations, the doctors and I had a pretty good plan.  I would avoid eating dairy, we would use epi if she showed signs of anaphylaxis, and life would go on. The allergist said anaphylaxis is serious, but manageable. Her parting words were, “give her epi and she will be OK”.  So I moved on with life, and still had very little fear.
Fast-forward 6 weeks and I’m sitting in the allergists office learning that my tiny baby is also allergic to eggs and peanuts. At this point I realize I’m in over my head. I don’t know what to eat. I need help!
I went online and started researching food allergies. This is where my fears were brought to life. I was bombarded by stories of death and how children with food allergies get left out. How their lives are lived unfulfilled. On Facebook boards, statements like “Allergies can change at any time, so past experience doesn't mean your kid won't die next time” and “all food allergies are life threatening” were daily banter.
On some sites, there is a “group think” phenomenon that takes over.  Advice is given to keep your child away from the playgrounds, and that completely banning food is the only way to keep you child safe. If another parent disagreed, inevitably a handful of people will begin to bully, and statements like, “what if you do something wrong and your child dies” or, “You’re obviously not worried about your child’s life being in danger” would come into play. I had seen my baby in anaphylaxis and all I wanted was to keep her safe, everyone else be damned.
When it was time to start daycare, I had to find a way to make the staff understand that my child’s life was in their hands. I didn’t walk in prepared to educate or advocate. I went for the shock value. I didn’t say she had allergies, I said she had life threatening food allergies. I told them, in graphic detail, all the events of each anaphylactic reaction she had ever had. I did not tell them about the weekly small reactions that happened. I didn’t tell them that I understood how difficult it was going to be to avoid contact reactions to dairy in a room full of baby bottles. I didn’t even discuss that much pertinent information with them. I basically said, she only eats the food I bring and if you feed her the wrong thing you have 5 minutes to give her the epi or you’re going to kill her. It may seem like using scare tactics is the way to go, but each time I preached it, the monster in my mind grew a little more. Fear
A year and a half, and lots of anxiety later, Christmas comes along. My 4 year old nephew tried feed my daughter a cookie. When I looked down, he was holding the cookie against her closed mouth.  I reacted instantly. I snapped that cookie out of his hand, threw it across the room and began to verbally assault my family. I didn’t see a 4 year old trying to share. I saw someone else’s child trying to poison my child. I saw my mother as the woman who put more value in a cookie than my child’s life, and my sister in law as an enemy. I saw “them” vs. “us”.  My family just kind of settled into a stunned silence as I went nuclear. You see, I had taken the visceral hatred I had for the food and extended it to the people who were eating that food as well.  The people I loved!
They had no idea what the big deal was. They were not educated on food allergies. I simply demanded that no allergens be served, or we weren’t coming (even though I wouldn’t allow my daughter to eat “their” food) I failed my family by not educating them, and my stubbornness about keeping all allergens away at all times had actually backfired and put my daughter in danger. If I had educated my family on allergen controls and learned, myself, how to keep my child safe in an allergenic environment instead of demanding a food ban in my mother’s home, no one would have been sneaking cookies. Let me say this one more time.


I yelled at 4 year old and took his cookie away. He wasn’t even my kid!


I went home and called the only other FA mom I knew, looking for support. She’d been at it for years. Her statement was simple, but it had a profound effect on me. “No one wants to be the person who hurts your child.” That’s when I realized there was a major problem, and it was me. My mind had focused so much on what “we” were losing, that I had totally lost touch with reality. I was mourning the healthy child I didn’t get and at the same time fighting as fiercely as I could to keep the baby I had safe.  There was so much sadness, guilt, and anger in me.  I had to fix myself before I could fix my family.

What I failed to realize in the beginning is that it’s really difficult to live a fulfilling life with the boogeyman in my head. Does it keep our children safer to imagine all the catastrophic events that could happen? No, I believe it has the opposite effect. You need to have a clear head when treating an allergic reaction, and having a constant fear of “what if” is going to hinder your ability to treat your child effectively. For some reason, even today, I will find my mind wandering down that path.  The trick is to recognize when your mind is drifting and redirect it. I remind myself that she knows how to avoid her allergens. She knows how to use her epi pen and call 911. Every adult she is ever with is epi trained; basically, anything to redirect my train of thought.

We’re surrounded by negative stories. Every death that happens is plastered all over social media. Every school that violates a 504 or simply makes a mistake is demonized. The chat boards are flooded with pictures of young children, mid reaction. All these things do is propagate fear. Fear that we can't trust others and fear that our children will die. The reality is we have more medical technology at our disposal now than we ever did before, yet we live with more fear and anxiety than past generations did.
We have to change our way of thinking, if not for ourselves, than for our children. In 2009 a study was done researching the stress levels of food allergic children. The study did identify a subset of children who had increased distress scores. The children with mothers who had high levels of anxiety, also had high levels of anxiety as well as a more negative attitude about food allergies in general.
I do not want my daughter to inherit my fears. I will not psychologically handicap my child. She already has enough to deal with. There are tons of situations that still make me nervous. I would love to ban her from any event that involves food, but that’s not going to help her in the long run. She is going to have food allergies the rest of her life. I don’t want her to live a life of fear. She needs to learn how to live a happy, productive life in spite of her limitations. She has to learn how to cope with the emotional aspect of food allergies. While pushing it all away as long as I can feels like the right thing, I have to ask myself, what is best for her in the long run? Will demanding bans or instilling a fear of her allergens help her learn to navigate her environment? No. Is there a possibility it could influence her toward becoming an entitled and demanding adult? That is a concern.

I would rather she live her life fully, despite her allergies. I want her to realize that not everyone knows about food allergies. People don’t leave her out to be mean, but simply due to a lack of understanding. Even if they do leave her out on purpose, I want her to gain strength from the experience. Everyone is bullied sometimes, everyone feels different, and sometimes people get left out.  I would love to protect her from those things, but they happen to everyone, regardless of allergies.  I want her to realize that everyone deals with something. I want her to be empathetic. Mostly, I want her to really live.

Why Do Your Kid's Allergies Mean My Kid Can't Have a Birthday?

If you have been on many FB pages today, you may have seen this article Why Do Your Kid's Allergies Mean My Kid Can't Have a Birthday?   If you haven't had a chance yet, I would encourage you to give it a read.  This was a very thought provoking article for me.  The author has an egg allergy. She knows what it is like to be left out. She understands the potentially life threatening reactions that can happen and, honestly, I agree with some of what she says.


I agree that asking other parents to bring in commercially packaged foods that are "safe" for our kids is not appropriate. I sincerely doubt a parent without an allergy education actually understands if the food they brought is safe or not.  Do you think Tommy's mom called to check on cross contamination?  Most of us (definitely me) knew nothing about food allergies, label reading, or safety protocols until we were thrown into the allergy lifestyle.  It's insane to expect another parent, who hasn't had to deal with allergies, to know what is acceptable.


Now, she loses me a bit in the next couple paragraphs.  They have to buy store bought food due to food allergies?  I think it's a bit more about food safety.  Let's face the hard truth here, some people's houses and hygiene are substandard. The schools, and me too, don't want kids eating potentially contaminated foods. Nothing like having 25 third graders with food poisoning.


Then she goes on to talk about how she doesn't want her kids eating junk foods with long lists of  ingredients.  If you truly want your child to have a healthy diet, then why are you ok with them having 25+ sweets during school hours. With all the parties that happen, in addition to birthdays, there is junk food in the classroom on a weekly basis.  Also, how come the mom who could only bring fruit snacks and juice because of allergies couldn't opt for fresh fruit?  It certainly would have had less ingredients.


Next, the author moves on to something that has caused a bit of a divide in the allergy community and beyond. It's the idea of banning certain foods because of allergies. The author discloses that she has an egg allergy.  My daughter is also allergic to eggs, as well as dairy and nuts.  With nut allergies, bans are commonplace.  It seems like if the school or parents ask for no nuts, they just get it. Yeah, the nut kid goes to school and the parents feel pretty secure and the nut allergic child feels safe. This is another moment that we have to be real. I have two big problems with food bans.  1) Schools can't really enforce them properly. Kids, and even parents, bring the nuts anyway. 2) Why get your child used to the idea that their safety is only guaranteed by exiling the nuts.  Some day they will go to middle school and exceptions will no longer be made.


Then there are other foods, like egg, soy, and dairy, that are staples in every meal.  They will never be banned and you can't avoid them.  Children with certain food allergies grow up knowing the food around them isn't safe and that everyone else will be eating it around them. They are thrown into all of this head first and have to learn as they go, sometimes from experience. My daughter has become a master at avoiding kisses from people after getting tired of all the contact reactions. The sense of security she gets is from knowing how to avoid the foods and contacts, and how to treat herself (or get help) if an incident occurs.  There is not much you can do as a parent but teach them advocacy, avoidance, and treatment for the symptoms that happen occasionally, and keep an open dialog about their feelings of being left out or feeling different.


I have an interesting perspective on food allergies right now. My friend Natalie, of behind the reaction has food allergies. My daughter isn't at the age where she can clearly tell me what she's experiencing, or how her food allergies affect her personally. I get to see it through Natalie. She is an incredibly outgoing, motivated, and caring person who has never let her food allergies slow her down.  It's just something she has to deal with. What someone else is eating isn't going to change her plans. She goes out to eat, hangs with her friends, and is working towards a medical degree. Some days are hard for her still. Some days she's a hot mess, but don't we all have days like that? The point is, she is living her life, fully, with food allergies. She is a shining example of what our "allergy kids" can become. 


At what point do we as parents, and schools, stop sheltering our kids with food bans? While I totally agree with the author that bans may be necessary in younger grades, for certain students, at some point we also have to teach our kids to live their lives around their allergies.  How to avoid the foods on their own, and just as important, how to deal with the emotional aspects of food allergies. Yep, sometimes they get left out of the cake, but everyone has something to deal with. Lets not forget the kid in the wheelchair who doesn't get to play soccer or the blind child, deaf child, dyslexic child. They are all dealing with the emotional aspects of their disabilities as well. Let us not forget the children who are dealing with poverty, domestic violence, and hunger.  I think it's important that our children realize that there is no such thing as different. We all have to adapt a bit to be the person who society wants us to be.


I feel it's important to teach my child as much about her allergies and needs as early as possible. Then she will have all these years at home with me to master it.  It's going to be with her the rest of her life so she needs to learn how to advocate for herself. I'll always be here to help her work through her feelings, and guide her in avoidance techniques.  There's no doubt that she will come home, more than once, in tears because she feels left out or was teased about her allergies. I would rather she take the bad experiences and remembers those feelings. My hope is that she will take the empathy she has gained from her hard times, and use it comfort others who are having trouble coping with their own issues. 

Hot Chocolate and an update

Hi everyone. Hope you all are doing well. As you probably noticed, I took an unscheduled break from the blog. I was super busy with church, our local support group, starting homeschooling, and trying to run the house that something had to give, and honestly sometimes I think I'm probably the only person who actually uses this blog. I have reached a point where I feel like we've got settled into our new routine and I can pick this back up.

Holiday season is quickly approaching. The next couple months are my favorite time of year. In our family, we spend almost every weekend together, starting the week before thanksgiving and ending a week after new years. We have tons of birthdays jammed in between all the holiday festivities.  I cherish all the time I get to spend with my parents, siblings, and nephews, but there are always a few moments where either the boys have to go without, so my daughter doesn't get contaminated, or my daughter feels left out because they get something she can't have.

My goal this holiday season (really all year round) is to try to keep this from happening. I have gotten comfortable enough in my kitchen that I really believe that any recipe can be adapted. If you have any recipe's you would like to see me try, just let me know. I'd love to hear what you're interested in learning to bake. Feel free to give me a challenge, or show me what you have done. I would love to share your success stories as well.

My daughter recently learned about hot chocolate. She saw someone drinking it and has been asking for some ever since. I don't know of any cocoa mixes that are safe for her. I found some vegan ones, and even one labeled allergy friendly, but they all are processed on lines with nuts. At the same time as I was looking for a safe mix, my friends daughter had just been taken off dairy and she was missing cocoa. I decided to mess around in the kitchen and make my own. I mean, come on, how hard can it be? Just cocoa powder and sugar. Well, silly me, I used granulated sugar the first time! YUK  In the end we settled with this mix.

Hot Chocolate (Cocoa) Mix

2 cups Cocoa

3 cups powdered sugar

I just mixed them together and put it in a sealed container. Any time she wants hot chocolate we heat up her soy milk and add a couple teaspoons of the mix.

Every one who has had this hot chocolate has given it their seal of approval. It makes me wonder why I ever bought the prepackaged stuff. Lately I've been paying even more attention to the foods we buy. I'm not only keeping it allergy free, but I'm trying to make sure the prepackaged foods I buy aren't full of gross chemicals and unnecessary ingredients. Not only is this hot chocolate recipe allergy safe, it is also "clean" and cheaper than the packaged stuff.

I'll be back later this week to tell you all about our Halloween. Stay safe out there everyone.

Behind the Reaction

by Natalie

"It starts with a feeling, an itch, a sneeze. Within minutes, if not seconds, of eating something I can feel a reaction is starting. I take Benadryl hoping it is just a minor reaction and it will not progress. Soon, I know whether it is minor or if more symptoms will develop. If the reaction continues I begin to feel itchy all over. My face and neck start to get red and blotchy with hives. I feel like my stomach is being ripped apart. Then, the swelling begins. My eyes begin to swell to the point where I am unable to see because they are shutting. I do not even look like the same person. All of these symptoms are annoying and frustrating, but can be manageable. The scary part is when breathing troubles begin. It feels like you are far underwater. When I was little I used to always try to dive down and touch the bottom of the deep end of the pool. You start to feel the pressure of the water on your lungs and you know that you need to get to the top and take a deep breath. A reaction is the same way. I feel the pressure on my lungs. I am struggling to take a deep breath and know that I need to breathe. The only problem is unlike the pool where you can get to the surface, there is not a surface to break through during a reaction. In order to get that deep breath an Epi-Pen must be used. Any reaction is scary. A symptom listed of anaphylaxis is “impending doom.” How horrible is that?! No one should fear that taking one bite of something can leave them struggling to breathe, but it is what many people and families live with every single day. I am one of them. This is my truth. This is my journey. This is what happens behind the reaction."

I wanted to take a moment tonight to introduce you to my friend Natalie. The excerpt above is from her blog  http://behindthereaction.com/. 

Natalie is smart, fun, social, and energetic. She also has food allergies. I met her at our local food allergy support group, and we hit it off immediately.  Natalie is severely allergic to peanuts and tree nuts and has recently been diagnosed with idiopathic anaphylaxis. For those of you who don't know, it is anaphylaxis with no known cause.  Meaning it could happen anywhere at any time.  She has gone into anaphylactic  shock three times in the last seven months. She is a college student, food allergy advocate, and co-leader of our local support group.  I have a feeling this girl might be a household name in the FA world some day. 

One of the things that I admire about Natalie, is that she isn't living her life, fearing when the next reaction will come. She takes every day as it comes and lives life to the fullest, with a purse full of epinephrine I might add.   Another benefit to speaking with Natalie, is that she brings a different perspective to food allergies, that we don't get as parents. 

Natalie is very open about her allergies, and will even post pictures of her reactions. I love her blog mostly because  as parents, we see the symptoms and we treat the reaction, but we can only guess what it's actually  like for our kids. Through Natalie, we get to see behind the reaction.  

Update

Hey everyone, just wanted to give you all a bit of an update.  I've been crazy busy here lately and something had to give, so it was this blog. I'm involved in two committees at church, the preschool board, and our local support group. Church has been keeping me super busy, working on coming up with safe alternatives for the allergy kids in Sunday school, fundraising for malaria, and working on getting our FARE team put together. This Sunday, we are having a tea party for mothers day, and I'm in charge of the allergy free table. I'll make sure to take lots of pictures, and share the recipes that work out for me.

Thank you, to everyone who has been checking in while I've been away. I plan to get the cooking and posting back into full swing next week. I am wondering if there is anything you would like to see more of? Like meal ideas, or maybe weekly meal planners with grocery lists? Let me know what you think.

                                                                                                     -Aggie-

Snicker Doodle Blondies and Two Cinnamon Rolls

Hey all! Sorry for the unexpected break. When I moved 7+ hours from home last year, I did NOT expect to see so much of my family. I guess that's one of the perks of living in a vacation hot spot. While this blog has been sitting unattended for the last month, I have been visited by four different sets of family members, gone tubing, and even spent a little over a week back in Kansas. I have been baking though. Here are four of our favorite breakfasts and treats from the last few weeks.

If it were up to my daughter we would eat cinnamon rolls every single morning. There are two problems with that.  1) I have to wait FOREVER for the dough to rise and 2) I can not eat the exact same thing every single day. Normally we have regular rolls, or sometimes cinnamon apple rolls. She really wanted some this morning, and there just wasn't enough time, so I searched out a yeast free roll and it was surprisingly good. It also only took about 20 minutes start to finish. The thing I loved about these cinnamon rolls is that they are not the typical chewy bread. It's hard to explain, kind of like if pie crust and biscuits had a baby. It just melts in your mouth. 

Since I already had the fixins for bread out, I just kept going. We also made pumpkin spice cinnamon buns. I was going to put these in the freezer, but then we taste tested them too. It's so nice to have another option. The only substitution I had to do was sub soy milk for almond and I omitted the walnuts from the filling. 

I also found this snickerdoodle blondie recipe on pinterest and decided to try it safe. It was so good that we ate the entire pan then my family asked me to make another batch the next week. If you are going to try anything, try this. Seriously! All I had to do was sub. margarine for butter and flax for the eggs. 

Dear Nickelodeon

Dear Nickelodeon,

         I watched your latest video on Nick Mom, and I have to say, I wasn't terribly insulted..... at first.  These were my thoughts as I watched the video

1) We would NEVER let our allergy kids eat food from a bake sale, even if it was clearly labeled.

2) Thank you for separating the allergens! but my kid's still not eating it, so you just wasted your time.

3) Flavor free!?  Who are you kidding? We may be an allergy free house, but ALL of us allergy moms know how to bake.  Guess what?  We're good at it too. Like, really good. I can make anything you can, without the allergies, and make it better.  Not only will it taste better, but it will be healthier. Mostly because it's not from a box, like other parents use. You see, being an amazing cook is a necessity for us, and we have learned to be chefs out of necessity. 

4) that whole sarcastic comment about "lets show our kids healthy eating is cool"  How many children in the country are obese? How many FA kids are obese? I think there is an important message in the answer to those two questions. We live in a time where people eat out more than they eat in. Not us! It may not be "cool" to be healthy, but it will be in 50 years when all the unhealthy kids are dead from clogged arteries and food induced diabetes. (please don't come get me diabetes moms. I'm talking about the ones who bring it upon themselves)

5) "I hate gluten" That was the first comment that really made me think, You're an ass!

So, this video isn't so bad. I mean I've seen worse, and the world is full of uneducated people. I am really slow to jump on the allergy boycott bandwagon. I mean, we still eat GM cereals even though they made pb cheerios.  Maybe Nick just didn't think about the message they were putting out there.  Then I found this article  on their site as well. It is titled, " Top 9 Most Desirable Kids Allergies".  I'm sure it's all meant in fun, but obviously you have no idea what it is like to have to avoid red dye #40. (number 6 on this list was red drinks allergy)

Finally, I saw a link to this third video, and it was this one that finally got to me. While the woman starts the video by saying her child has an allergy, I don't think that excuses Nick from putting out the message that food allergies aren't a big deal. Also if this is a true story (which I doubt it is) this woman has obviously never seen her child quit breathing. I have, and it's definitely not something that anyone would would ever joke about. For the most part, I won't even talk about it, and I would definitely not call it, "no big deal" afterwards. 

After realizing that Nick is showing a pattern of making light about food allergies, I feel that you must not be educated. I don't know if you are a man or woman, but I assume you are a parent, if you are running a nick site.  If you knew what we had to deal with on a daily/weekly/yearly basis, you would have never written the things you did. You see, nick, every day we pack our kids lunches and medications and wish them a good day at school, while we sit at home or work hoping that they make it home safely at the end of the day. You don't know what it's like to have that moment of panic when the schools number pops up on caller ID . While other parents may have separation anxiety, or worry that their kid may fall on the playground and break something, we have to worry about the kid that ate a pb sandwich at lunch and didn't wash his hands, or the kid that bites, because either of those things can send our babies to the hospital.

Yes, our child's needs make it harder for you to plan your bake sale or christmas party. What you don't know, is that we spend 6 moths filling out paperwork and going to meetings, just to ensure our children are allowed to go to school in a safer, less restrictive environment. Then our kids do get into school, and they overhear the other parents bullying their parents, or complaining about restricted parties. Did you ever stop to think that you are also making life harder on us?  How are your comments affecting my child? Here is an example of what your thoughtless comments do to our children.

Yeah, I get it, you're pissed because you like junk food, and in america food comes first. Is there any celebration in this country that doesn't involve food? So for one hour (or 8 in a nut free school) you don't get the food that you want. BIG DEAL! What you are doing to my child, is telling them that they are the party pooper. They're not to be included, and by ostracizing us parents, you are taking your children down that ignorant path with you. Pretty soon our kids are sitting at a table by themselves, being excluded from activites, and are getting bullied by your kids. All because of something they have no control over. You don't ask a child with cerebral palsy to climb the rope in gym, you don't make fun of the kid in the wheelchair for using the ramp, so why do you make my food allergic kid sit in a room full of food that will exclude them and possibly injure them?  And if you don't get your way, and the classroom is food free, then why do you choose to believe it is OK to blame me and my child instead of the disease?

I could go on and on about all the trips to the doctor. The needles, the tests, and all the specialists  but I'm sure you've gotten bored by now. This is just a tiny glimpse into my daily life. So, while I'm sure you didn't mean to stir the hornets nest...  you did. Us food allergy parents have a lot on our plate already, and if you're not willing to be an ally, then could you at least not work against us?

P.S. Maybe you could take a cue from Disney. They have introduced characters on some of their shows that have food allergies. Their parks are also allergy friendly, and one of their actors, Kenton Duty of  Shake it Up, made a video about how to be safe with FA. I can tell you, that we will definitely be spending more time watching Disney, and avoiding Nick, unless you decide to take action on this matter.