My Daughter Has Food Allergies Just to Annoy Me

My daughter was born with life-threatening food allergies.

Really, she did this just so she could bother me. She wanted grocery shopping to me a nightmare. She hoped that I would have a nervous breakdown every time I tried to cook a safe dinner. She is just one of those kids who does everything in her power to be annoying. And with food allergies, she's definitely winning!

No?

A little selfish?

A lot wrong?

Food allergies is a medical diagnosis of a life threatening condition. No one can control it. No one can cure it. No one can even treat it.

You get to live your entire life in total fear of your allergens as you carefully avoid them so that you don't die.

But clearly my daughter just does all this to make her parents crazy.

At least that's what Healthline thinks in their article.

Food allergies are just something that kids do to slowly kill their parents on the inside. It's just a huge inconvenience and a total pain to have to deal with. And it's all your child's fault!

Why is it socially acceptable to make fun of food allergies?

What if the article were slightly different and mentioned other health issues?

For example, "Your child has cancer just to bother you."
"Your child was born with that medical condition just to get attention."
"Your child was born with special needs in order to break the bank with the cost of the special medical equipment that they require."

Don't kids do these things on purpose just to annoy their parents? According to Healthline, having food allergies ranks in annoyance next to your child waking up extra early on weekends and falling asleep in the car right before you reach your destination.

No. It's absolutely inappropriate to equate any type of medical issue to the silly and immature things that kids do like leave a trail of food all over the house or refuse to take a family picture.

It would never be socially acceptable to state that your child's cancer diagnosis or diagnosis of special medical needs was orchestrated by the child just to annoy you. You would never, ever think of blaming the child for their medical problems.

That is utterly heartless.

Any parent with a child who has received a type of medical diagnosis knows that the diagnosis feels very unfair but cannot be blamed on anyone, least of all that child.

When will food allergies be considered a serious diagnosis that is unacceptable as the brunt of jokes?

How Food Allergies Taught Me to Cook

When we first got married I wasn't much of a cook. Actually, I couldn't cook at all. I could pour a great bowl of cereal and turn on the oven for a frozen pizza. However, I didn't do much actual cooking.

During our first year of marriage I started attempting to cook a few things. I collected recipes and read through some cookbooks and began to experiment. I usually spent much of my cooking time on the phone with my grandma to ask her questions like, "What does it mean to cream butter and sugar together? What does it mean to fold the ingredients together? How do I broil this? What does 'al dente' mean?"

As you can see, I had a lot of questions. I even watched YouTube videos about how to chop and prepare certain foods. Over time I did learn to cook a few meals and I could successfully put homemade dinners on the table.

Then we had our little allergy baby. Now I had to cook without eggs, gluten, dairy, soy, peanuts, tree nuts, fish, coconut, avocado, banana, melons, pineapple, and any type of seed. Basically, I had to start over from the beginning with an entirely new set of cookbooks. But this time I had no one to ask for help.

Going out to eat was never an option for our family anymore. This meant that I had to shop for some crazy-strange ingredients like xanthan gum and stay in the kitchen until I made something a little bit edible.

The first year of learning to cook for Bee I had many more failures than successes. I spent lots of time crying in the kitchen over ruined meals. I slowly found a few recipes that were not only edible but actually fairly tasty. Once we had a few favorites, I made those same meals over and over again until we were all so tired of them that I was forced to try something new. Then the cycle began again with lots of failures before eventual success.

I loathed cooking and dreamed of going out to a restaurant to eat. I hated the pile of dishes in the sink every single night. Grocery shopping was a tearful adventure to find something, anything, safe for Bee to eat.

After several years we have built our own recipe book that is filled with some family favorites that are safe for everyone to eat. Cooking is no longer a nightmare and I've started to enjoy the challenge of making delicious and healthy food for our family.

Food allergies taught me how to cook. Before our diagnosis, I could cook a few simple meals but now I can step far outside of that box and make meals from scratch. I have confidence in the kitchen. And best of all, our family eats healthy, fresh, unprocessed foods. We don't have the option to use nearly any processed food as they all contain at least one of Bee's allergens. So we spend most of our time in the produce section finding fruits and veggies to combine with a protein in order to make a complete meal.

Food allergies have been a little bit of a blessing in disguise for our family. They've brought us together in the kitchen in order to overcome the challenge of finding food that we can all enjoy. Now my husband helps me cook dinner on most nights and even my older children step into the kitchen and assist with cooking. We try new foods and eat only fresh foods.

I can bake bread, make rolls, whip homemade icing, whisk a roux, pan sear meats, and saute veggies. I've learned some basic cooking skills thanks to our food allergy diagnosis. Now my family eats homemade meals every night and we bond together while creating and trying new recipes.

A Published Book and a Funny Story

So, I have some exciting news to share with you! I have a published book about our food allergy journey with Bee. You can find the book, Hives in the Kitchen, on Amazon. Within a few weeks you can purchase the book to read on Kindle.

But before I tell you more about the book I have to tell you the story behind the book.

Did you know I was writing a book?

Neither did I.

Feel free to be as surprised as I was when I found out.

Last week, my hubby quietly slipped a cute book into my hand. It looked quite a bit like my blog design and even had the same title. Just before I angrily asked him who was stealing my ideas, my eyes glanced at the bottom of the cover. My name was printed across the bottom. I quickly flipped through the book and recognized the typed words from my journal. This was my book.

You see, my blog, Hives in the Kitchen, had an unpublished side of it. I had written about our journey when Bee was a baby, yet I never published it for anyone to read. It was personal and written mainly so I would never forget about the challenges we had overcome. One day I wanted to be able to read through it with Bee so she could know her own story. I hoped it would help her take her food allergies seriously and also take ownership of her diagnosis as she learns to advocate for herself. But mostly I prayed it would provide hope for her as she faced the future. I wanted to communicate how we had advocated for her as an infant with the hope that she would tirelessly advocate for herself and others with allergies.

So, to sort through my thoughts and my emotions on days when I felt especially discouraged about the allergies, I wrote about the past. I cried out tears of frustration as I typed every word and somehow my heart felt more settled and I was once again ready to step into my role as advocate and care taker.

My husband had seen these pages detailing our journey and we often read them together to rekindle our hope and to encourage us in our prayers for a cure and for healing.

I never planned to do anything with those pages, really. They were so close to my heart and I couldn't imagine anyone else wanting to read the details of our journey to find a diagnosis for Bee.

My husband always felt differently. He wanted me to publish the little journal as a book for others who were also dealing with food allergies, believing that others could benefit from reading about the misdiagnoses, challenges, and emotions that filled the first years of Bee's life. I never believed the writings to be good enough for anyone to care to read. Whenever he mentioned publication I just nodded and said, "Maybe someday..." However, I never thought that "someday" would ever arrive.

Well it is that "someday" now. As an early Christmas present my husband had the story about Bee published into a small book that we can share with our friends and family and with others who are walking their own food allergy journey. I will always believe that the story is not "good enough." However, despite any imperfections I pray that it will be an encouragement to others who face the same diagnosis.

The book details Bee's early symptoms as a baby as well as the multiple misdiagnoses given us by the various doctors that we visited. It includes the stories of Bee's first allergic reactions and our quest to find a doctor to support us as we worked toward healing her little body. The book is also filled with my thoughts and how the allergies impacted me as a mother - the fear, frustration, anger, discouragement, and loneliness that followed me through those early years. However, the book ends with hope in finding support through friends, family, and doctors as well as peace in discovering a new normal in our family - a normal that is now our life while managing the multiple life-threatening food allergies of our daughter Bee.

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The Day Banana Bread Made Me Cry

It's silly actually. However, banana bread was one of my absolute favorite foods right after cheesecake and lasagna. I rarely get to eat those foods anymore, much less make them in my own kitchen. I miss them lots and lots. But Little Bee is worth more than my favorite foods so I plod forward in our allergy journey trying to forget my favorite foods of the past while finding new ones.

A few weeks ago I was talking to a friend on the phone and somehow my secret love of banana bread came out. I don't even remember what was said. I just made a passing comment about one of my all-time favorite foods and then we moved on.

Last weekend our friends came over to play at our house. They brought their van full of kids with lots of noise and laughter. As they came through the door the mom quietly handed me a small bundle, "I knew that nuts were not safe so I didn't use any." I stood looking at the small foil-wrapped gift, bewildered. Then I looked at her in total confusion. She laughed and said, "It's banana bread that I made today."

Then it dawned on me. She remembered our totally random and very short discussion about banana bread and she secretly brought me a gift. And she made it nut free so I would feel safer while eating it.

I grabbed the still-warm loaf and hid it on a high shelf in the kitchen.

After our friends left and our kids were in bed, my hubby and I brought out the sacred loaf and some paper plates. He cut me several slices and we hid in our bedroom to eat the contraband.

I had not had banana bread in at least 5 years. It was ridiculously good and worth every minute of the later clean up when I scrubbed counters and wiped away every trace of crumbs.

The next day I ate the rest of my little loaf. And I sat in bed and cried.

It may have seemed like a little loaf of banana bread but it was actually much, much more. It was a friend who, although she does not fully understand our allergy issues, has compassion on another mom and her crazy secret desire for banana bread after 5 years. It's remembering one little comment. It's simple friendship. It's just the little things that mean so much to an allergy mama who feels guilty for craving the unsafe allergy foods.

Yes, banana bread can bring you to tears. It's so good to have friends who have compassion even on this crazy allergy mom.

Quaker Oats Takes Jab at Food Allergic Community

Update: Quaker has apologized. However, I will still choose not to support them for now. 

An article came across my Facebook news feed the other day. It was on BuzzFeed and looked to be authored by Quaker (or at least was being used to promote the Quaker products). It was posted on Quaker's Facebook page, so even if the article was not from their marketing department directly, it was endorsed by their company Facebook page and was being used to advertise their products.

This article listed 50 Thoughts Every Mom Has at Snack Time. You can read it on the website at BuzzFeed.

The article begins by detailing a mom's inner thoughts as she tries to prepare an after-school snack for her kids. Here's a screen shot of the first part of the article:

Really? These are the thoughts that run through every mom's mind during snack time? These thoughts have NEVER crossed my mind and I can say for certain that my sweet friends never entertain these thoughts.

My kids have life-threatening food allergies. Feeding us is like a chemistry experiment gone horribly wrong. I have a hard time finding safe and healthy snacks for us and I know my friends do as well.

However, my friends treat us graciously. They ask me what is safe for my kids and go above and beyond to accommodate us. They encourage me to bring my own food and they commit to only feeding their children safe foods while mine are nearby.

I know this is not the case with everyone. Some people are incredibly inconvenienced by our food allergies. Others are downright rude to us about it.

Well, I'm not sorry that my child's life threatening medical condition makes your life slightly more challenging. I AM incredibly sorry that my kids have to navigate a world where people and even companies treat them as second-class citizens, making them out to be nothing more than an incredible inconvenience and the butt of many jokes.

Shame on the author of this article. The statement, "I mean, I like her, but come on" is beyond offensive. This insinuates that we should only be friends with those who are just like us. Forget those who have various challenges, they are not worth befriending. No, only like people who are don't have any type of difficulty.

I guess this means that we can't be friends with those who have cancer or other serious medical conditions, are handicapped, have emotional struggles, or have learning challenges. I mean, come on, those people are difficult to be around sometimes! Heaven forbid that I have to exhibit some grace and compassion, I mean, that's just so time consuming for my very busy self!

Absolutely not. This kind of self-centered thinking is the problem - not the sweet kids and courageous families who are faced with incredible challenges. 

These are not the thoughts of EVERY mom at snack time. No, I'm thankful to report that a few gracious, kind, compassionate souls still exist. I know, for they are my friends. They help me advocate for my children with their allergies and they are quick to sacrifice for our safety. 


I will not be supporting this company in the future. I hope they apologize and show a little compassion and humility. Maybe with some phone calls they can be educated about the severity of food allergies. I urge you to contact them at this number and share your thoughts on this article with them: 1-800-367-6287

Unknown Food Allergies

Let's talk a little bit about our sweet Punkin. I have said that she had food allergies from the time that she was only a few weeks old. Here's why I suspected food allergies from the beginning:

• She had incredibly dry skin. We're talking about very rough, sandpaper, flaky skin. My pediatrician was shocked when he saw her at her 2 month check up because her skin was so very dry and scaly.

• She had eczema and red rashy skin. Bee was our original eczema baby and while Punkin's has never been as bad, she did have lots of red rashes (and still does).

• And of course there's the tell-tale sign of hives. She's had outbreaks of hives multiple times. While hives can be caused by other things, I was fairly certain that these were food related.

So, to keep track of Punkin's allergic reactions I keep a food diary. I write down every time she has hives and what she ate that day. So far I haven't been able to confirm any patterns. However, I suspect that she has an issue with dairy and with nuts - specifically almonds.

Right now we can't be sure what she is allergic to. In fact, her allergy tests all came back negative when she was tested last year. But we know from personal experience that these tests are not always accurate, especially on young children. The most accurate way to determine a food allergy is through a food challenge. Of course, I'm not going to start feeding suspicious foods to Punkin to see if she has a reaction, but I can tell a few patterns after looking through our food journal.

While we usually eat only allergy-free foods in our house, there have been times when only Punkin has gone to dinner with us and tried a few regular foods. And there are a few hidden snacks in our house that are just for the parental figures. These snacks are not allergy free and are usually eaten late at night when Bee is not around to have any problems.

Not knowing what is causing a reaction is the most frustrating and scary part of being a food allergy parent. You want your kids to try new foods but you know that new foods could cause a problem. However, you have no idea which foods you should try and which foods might cause a reaction.

What can you do to help you discover the list of food allergies?

• Keep a food journal - Write down everything that your child eats daily and how their skin looks and if they have any reactions.

• Continue with allergy tests - While these are not always accurate, they do sometimes yield some helpful information.

• Learn about food families - Knowing that Bee has an allergy to banana means that she's likely to also have an allergy to avocado and melons (which she does) because those are in the same family and are cross-reactive. 

• Listen to your child - Often Bee will refuse to eat certain things and it is often because they make her feel unwell. She's a fairly good judge of things that bother her or might cause a problem. Sometimes I just have to trust her senses and intuition. 

There are many reactions that we've never pinpointed the cause. I try to write down everything I remember from the day of every reaction and keep a list, but it doesn't always become clear what food caused the reactions. I can just go off our past experiences and what our various allergy tests have shown. There is so much guesswork and intuition involved.

Aftermath of an Allergic Reaction

Doctors tell you what to look for during an allergic reaction. You've seen these anaphylactic reactions so you know what they entail. You alert everyone to look for hives, swelling, redness, shortness of breath, and wheezing. Numerous online articles are dedicated to outlining all the possible symptoms of an allergic reaction. It's important to quickly recognize these symptoms and be ready to respond with medication. But no one tells you what life is like immediately following an allergic reaction.

Here is what happens at our house after a reaction:

• Bee is exhausted. She will often go straight to bed and sleep for hours after a reaction. She's usually very tired for the next few days as well.

• Bee is swollen - often for several days. This swelling is usually somewhere on her face or her neck.

• Bee is stuffy and runny. She sounds like she has a terrible cold and she needs lots of Kleenex.

• Bee has a cough. She will start coughing during her reaction and the cough will linger for several days or even a week. It's usually a dry cough that occurs throughout the day and can be worse at night.

• Bee is itchy. While the itching is uncontrollable during an allergic reaction, she might still have some minor itchiness for several days afterward. This means lots of lotion, cool baths, steroid cream, and humidifiers.

• Bee has a rash. During the reaction Bee usually has a full body rash of hives. After the reaction calms down, she is usually left with patches of a red, bumpy rash. This is usually her eczema flaring up and making her feel hot and itchy.

• Bee needs Benadryl. We often need to treat her discomfort with some Benadryl for a few days. It also helps prevent a rebound reaction since it does take a few days for the allergen to completely exit her system.

• Sometimes Bee needs oral steroids for a few days. While I don't like giving her steroids, they are sometimes necessary following a severe reaction. They keep the swelling down and help prevent a rebound reaction.

Usually with an allergic reaction we spend about 6 hours in the ER to treat the reaction and monitor Bee. After that, we go home with an exhausted child who is still miserably uncomfortable. Then we spend the next few weeks hovering over her, watching for any signs of another reaction and worrying ourselves silly. Thankfully, she's never had a severe rebound reaction and after a few days, is feeling like her old self again.

While a reaction is very scary and stressful to the child, what does the recovery process look like for the parents?

• We are weary and exhausted. We usually feel like we need a nap after our ordeal. It's almost like feeling you've been up for days and then run over by a truck. It's a terrible kind of tired.

• I usually have a migraine. The stress and panic of the reaction usually sets off a migraine for me. Not only am I tired, but I have to spend the next day in bed with a pounding headache.

• We are stressed. Nothing can ruin your day like seeing your child unable to breathe. It makes us feel stressed and that stress and anxiety linger for weeks.

• We feel guilty. After every reaction we analyze what we did and what we didn't do. We feel guilty wondering if we could have prevented the reaction or if it was somehow our fault.

• We become hyper vigilant. If you thought we are always neurotic, you should see us after a reaction. We check and double check everything. Many days we don't even feel like leaving our little allergy free house. We also tend to hover over Bee and worry about everything she touches.

• We lose trust in both ourselves and others around us. The guilt compounds and we feel completely overwhelmed and unable to cope with our allergy lifestyle. We question everything we do and cook. We also refuse to eat out for a time and we try to stay away from everyone for a few days to allow us some recovery time. We feel like we're second-guessing ourselves and everyone around us.

• We plan for the next time. After each reaction we come away a little more knowledgeable and a little more prepared. We talk about what we would do differently next time and how we can be better prepared for an emergency.

We experience the aftermath of an allergic reaction for weeks and sometimes months after the initial incident. Once the initial reaction is over, there is still a long recovery time. This recovery is not just physical, but is mostly emotional.

When the Food Allergy Lifestyle Gets Old

If you are managing food allergies, you know that it gets old rather quickly. It is so tiresome to constantly evaluate every situation for an allergen and read every label for safety. I often confess to my husband that I'm tired-tired of eating this way, tired of living this way, tired of explaining the allergies, and tired of being so stand-out different. I just want to go out to restaurants whenever we want. I want to go to that birthday party and not worry about food. I'd like to go to someone's house even though they have cats and dogs and there are peanut butter cracker crumbs on the floor.

But in the times that the food allergy life gets old to me, I realize that I'm not being vigilant. Usually I'm able to remind myself that I have to be always aware in order to keep Bee safe. I must refuse to give up even though I'm tired. Other times I find myself being less careful or even entertaining the thought that she has grown out of an allergy. Most of the allergic reactions and ER visits that we've experienced have been in these times when I was feeling less alert in monitoring the allergies.

Yes, I get so very tired of living this way, but it's no excuse for forgetting to read every label and not taking the time to call every event ahead of time to discuss the allergy safety protocol. Despite the mundane moments in this allergy life, I have to choose to persevere and continue to advocate for Bee.

If I get tired of the allergy life, how much more so do those around me? I've noticed a trend in friendships.

In the beginning, I explain the food allergies and am usually met with faces of fear and awe. They are terrified to be around my children and amazed at what our family has to manage. I try to impress the seriousness of the allergies upon them so that they will be alert and aware when around our family. This helps keep Bee safe when we are with friends. I need everyone working together to insure that Bee's environment is safe.

It becomes more routine after we've known people for a little while. They easily remember that we are "the weird allergy family" and so they always remember to wash their hands and do things differently around us. They don't need me to remind them that they can't eat certain food around us. They know that we can't attend certain events - like that ice cream sundae party. So, they know that when we decline invitations that we're not being rude or ungrateful, we're just being safe.

Over time though, I've seen that some friends tend to forget the allergy situation or at least diminish the seriousness of the allergies that we manage. They ask if they can bring certain foods to our house. They ask if they can eat something around us. They question why we don't get out more and they wonder why we live so differently.

I've learned that this is not because they are insensitive and inconsiderate. It's just because our allergy lifestyle gets old to us and to everyone around us. They get tired of taking the precautions all the time. The seriousness of the food allergies gets tiresome and they can become forgetful. They don't intend to cause us to be in an unsafe situation, but they can overlook what we cannot - that Bee's life is at stake and we won't compromise her safety.

So, what do you do? I remind myself that they don't have to think of food allergies daily. When the newness of our friendship starts to wear off, so does their awareness of our allergies. They can become forgetful. They have good intentions but they simply don't live in this state of awareness that we do.

I have to extend them some grace. The same grace that I have to give to myself when I am feeling less than eager to read another label or cook another new meal. I understand that I can get tired of being different. It's to be expected really. Others will feel the same way. They will be tired of having to be alert and aware around us. They will accidentally forget certain things about our medical issues. And in those moments, I can respond in grace and provide gentle reminders.

There are going to be times when I feel less alert and when others experience forgetfulness. A food allergy parent must continue to persevere even when it's tiresome and it just gets so very old to live this way. In those moments I have to look at Bee and I'm quickly reminded that it's all worth it.

How Can the Church Include Food Allergic Kids?

It's hard to visit churches when you have a food allergic child.  Some churches are very aware of allergies and others have a long way to go in learning how to keep allergic children safe.

So, how can a church include kids with food allergies while also keeping them safe?

Educate staff on the serious nature of food allergies
It's difficult as an allergy parent to walk into a church and encounter staff who know nothing about food allergies. It means that I have to spend lots of time trying to explain food allergies and what they mean for my child. If everyone on the staff is aware of what food allergies are and the serious allergic reactions that can occur, it is easier to make sure my child is safe. All staff should be educated on the signs of an allergic reaction and the safety measures and medical protocol. 

Make sure all staff members know how to use an Epi pen or AuviQ
Many churches have training and background checks for volunteers and staff. These should also include a brief education on the treatment for an allergic reaction using an Epi pen or AuviQ. If all staff and volunteers know how to use the life saving devices, then the children's area is a much safer place for any child with allergies. Basic first aid should be part of the training to work with children in the church.

Have an allergy policy in place
The church should already have a policy in place for accommodating an allergic child.  This policy should include some type of notation in their computer system that alerts everyone of the allergies. There should be a way that the allergies are notated on the child's name tag or on the role sheet that the teacher's have every week. The staff should also have an emergency protocol for what to do if a child has an allergic reaction. A plan should be in place for the staff to know to administer meds, contact 911, alert a supervisor, and quickly locate the parents.

Serve a snack that is free of the top 8 allergens
The most common allergens are peanuts, treenuts, shellfish, fish, wheat, dairy, eggs, and soy. An easy to find food that is free of all of these allergens is Rice Chex, Cinnamon Chex, or Chocolate Chex. Other brands to consider are Kinnikinnick, Enjoy Life, and Glutino. Careful label reading will help you find snacks that don't contain these common allergens.  

Consider becoming food free
Some nurseries and children's programs are choosing to be food free for the 2 hours that children are in their care. These churches chose to focus on Bible lessons, play, music, and arts and craft time. They keep the kids busy with other pursuits and skip snack time altogether. This is a great alternative for kids who have food allergies and it eliminates the worry for parents of food allergic kids. In a society where every function revolves around food, this is one safe place where kids are able to learn without fear of coming in contact with an allergen.

Be open to learning about the different allergy needs of each child
The allergy profile of every child is different. What is safe for one child may not be safe for another food allergic child. There are many types of allergies and the degree of allergy varies widely as well. The church must be flexible and open to discussing the allergy situation of each child and reevaluating their program as needed. Policies might need to be changed if a new child joins the program. If the entire staff recognizes the unique needs of each allergy family, they can adapt and train staff on the new changes.

The important thing to understand is that every food allergy family has different allergies and must take different precautions. If the church staff is open to learning the details of each situation and changing their policies accordingly, food allergy families will be able to participate and feel included in church functions. And we so appreciate being a part of our faith communities as much as possible despite our allergy limitations!

Why Food Allergies and Church Don't Mix

I've found that the church is one of the most difficult places to navigate with our food allergic family. It's so frustrating to us. We want to be involved and be a part of our faith community. But our food allergies severely limit the number of activities and functions that we attend.

We've even found some churches to be unable to accommodate our family. When this happens, I'm sad and discouraged. Some staff are inconvenienced by our needs. Rather than find ways to allow us to participate, they are rigid in their policies and unwilling to make changes to welcome our family. This can be very hurtful and while we try not to take it personally, we do feel isolated at times. The very place that should be accepting of our medical needs, the church, is the one place where we are not welcome.

What makes a church an unfriendly allergy place?

Most churches serve coffee and donuts or other morning foods such as muffins. When you are bombarded with breakfast foods at every turn, it becomes frustrating and scary. Trying to walk through halls or pass through common areas where everyone has plates piled high with unsafe foods is a nightmare.

Some churches allow food in the sanctuary. In some churches, the members sip their coffee and snack on donuts in their seats as they listen to the sermon. This means that it is unsafe to sit on the pews or chairs at church. We sometimes have to bring blankets to cover our seating area to minimize the risk to our children.

Some churches have multiple buildings and the children are far removed from parents. In these situations, it would take a long time for me to navigate the large campus to get to my child in the event of an emergency. It also makes it difficult to communicate with those who are caring for our children and makes it impossible for us to check on them without missing the Bible study for adults.

Most children's programs serve snacks. This means that I can't leave my kids in any of the rooms safely because they are contaminated. Because snack time is such an ingrained notion in most church programs, the thought of changing the normal snack or doing away with the snack completely is met with much resistance. With the unwilling attitude to make changes to the snack policy, it means that my child cannot attend.

Most staff members are uneducated about food allergies and emergency protocol. Because the teachers and staff do not understand food allergies, I am unable to safely leave my children. Often, the staff has no plan in place to accommodate children with any type of special need and I'm left with a child who has no classroom to attend and who feels completely isolated and left out.

Many staff members underestimate the severity of the allergies or don't take the risk seriously. I've had many members tell me that they'll just serve my child a different snack while still serving the unsafe snack to the rest of the kids. They don't understand that just being in the room with the food can cause a problem. Some even believe that a little bit of the allergic food won't be a problem and have not followed my snack instructions for my children. This results in allergic reactions for my kids.

Most church functions revolve around food. The Sunday night fellowships often include a dessert get together after the service. Wednesdays nights often begin with a church wide meal. Special events are centered around the food, the candy, the ice cream, or the desserts. Sometimes the Bible studies are even potluck-style with everyone bringing their favorite snack food. When it comes to church events, the food is inescapable.

Many churches are changing their format to include small groups in people's homes. These always include food. For an allergic child, going to another person's home is often very unsafe. There could be residue of allergic foods throughout the house or the owners could have pets that cause allergy issues. Moving the church functions into homes of church members that are not aware of the allergies creates a scary environment that can be dangerous.

All of these situations create a problem for food allergic families. Because there is a general lack of awareness and sometimes no allergy policy in place, churches are often very unsafe. This means that there are times when we cannot attend church or must visit multiple churches to be able to find one where we can safely attend. We want to worship with those who share our faith and not be limited by the medical conditions of our children. At some churches, it's just not possible.

Identifying as the Allergy Family

If you knew us in real life we would be "that family with food allergies."  Most people know *of* us before they've actually been introduced to us.  I feel like we walk around with a tattoo across our foreheads that identifies us as the food allergy family.

Why this is good

• People never forget us

With our little entourage of 5 stair step kiddos and our larger than life food allergies, we are pretty memorable.  Thankfully this means that people immediately recognize us and our kids and connect us with food allergies.  This helps us keep our kids safe.

• People heighten their awareness when we are around

Because we are apparently so unforgettable people are mindful of what they are eating or serving when we are around.  Most people see us and their immediate reaction is to remove food or to keep food away from us.  At least they get the message and give us a wide path.

• People are educated about food allergies through us

We have the privilege of being the face of food allergies in our community.  When people think of food allergies, they immediately think of us.  And through the educational information that we've been able to share with others, they are more aware and understanding of others with food allergies.  They often refer newly diagnosed friends to us so we can connect with other new allergy parents.

• People are brought into our food allergy network

Through our food allergy advocacy we often meet other families with food allergies.  It is encouraging to be able to connect with them, share our struggles, talk about our discoveries, and commiserate about our fears.  We have been able to connect with so many other wonderful people and families through our identity as an allergy family. 

Why this isn't good

• I hate standing out

Our family stands out and not always in a good way.  People seem to panic when they see us coming and quickly hide the food.  When they talk with us the conversation often centers around the food allergies and how to keep our kids safe.  I miss being somewhat normal.  I miss just being able to have a quiet conversation and not have friends and teachers tracking me down to ask food safety questions.

• I hate when we are treated differently

Yes, we are sometimes looked at as if we are pretty strange.  Some people refuse to accept the reality or severity of the food allergies and they think we are ridiculously over-protective parents.  Others are so worried about the food allergies and our kids that they seem to exist in a state of panic whenever they are near us.  

• I hate when we are excluded

There have been times that we were not invited to a party or other function because the host didn't know how to accommodate us (or didn't want to make the effort).  It's hard to hear of birthday parties or get togethers that bypassed us.  Some people are honest and tell us they don't know how we could possibly come and others try to secretly overlook our lack of invite.  Either way, it does hurt that we can't participate as much as we would like.  There's no easy answer for including us, but it's heartbreaking to watch the world go by filled with cupcakes, ice cream, and pizza and miss out on the fun and togetherness.

• I hate when it feels lonely

I've talked about it before and I'll say it again.  The food allergy life can be lonely.  Some people think I'm crazy for my vigilance.  Others don't understand our medical issues.  Still others overlook us because it can seem nearly impossible to find a way to safely spend time with us.  I feel the loneliness and also worry about our children's ability to make friends who are compassionate and understanding.

I'm still trying to make peace with the fact that we are the food allergy family and that our reputation will always precede us.  

Why You Need a Spacer for Your Inhaler

 
When we were first prescribed rescue inhalers to keep in case of emergency I was not very familiar with them.  My husband has asthma but he rarely uses an inhaler so I was hesitant and overwhelmed.  I thought that you simply grabbed the inhaler, took a quick puff, held your breath, and then were fine.  I've learned a few things since then.  After visiting with the respiratory therapist at our hospital I was introduced to the spacer.

What is a spacer?

Spacers are devices that fit with an inhaler and help ensure that the medicine is properly administered.

There are two more common types of spacers:

One has a round opening that is placed in the mouth.  The inhaler is attached to the other end and medicine is sprayed into the chamber of the spacer.  Through taking normal breaths, the medicine is administered to the lungs.

The other type has a face mask that is placed over the nose and mouth.  The medicine is sprayed into the chamber of the spacer.  The medicine is administered to the lungs through the nose and mouth.

Which spacer do we have?

We actually have both.  However, we have found that Bee is most comfortable with using the spacer with the small mask.  I carefully fit the mask around her nose and mouth and administer her medicine.  She takes 5-8 normal breaths and then all the medicine has left the chamber and entered her lungs.  She is not as comfortable with placing the other spacer in her mouth.  Spacers with the mask are better for younger children.

Why do we use a spacer?

Without a spacer, much of the medicine from the inhaler sprays into the mouth and coats the teeth, tongue, and throat without reaching the lungs.  Less medicine actually reaches the lungs.  Also, much of the medicine can be swallowed and will end up in the stomach without reaching the lungs.

With a spacer, a child can breathe normally while the medicine is administered.  Because the medicine is sprayed into the chamber and not the mouth, most of the medicine is breathed directly into the lungs.  Therefore, a spacer ensures that the maximum amount of medicine enters the lungs.

So, in our little Epi Pen bags we have an inhaler and a spacer for when we need to use that inhaler.  Now I don't have to worry about whether Bee is getting the proper amount of medicine. 

Does the Type of Inhaler Matter?

My doctor has prescribed Xopenex inhaler's for Bee.  These are the blue inhalers for those of you who identify inhalers by color.  The medicine in the inhaler is levalbuterol which is a little bit different from the albuterol in a regular inhaler.  For some, the levalbuterol has fewer side effects - less jitters and shakiness.  We have used this inhaler in the past without any problems.

When I went to get a refill after the inhaler from our doctor was running low, I learned that our insurance refuses to pay for this inhaler.  Why?  Well, they wouldn't tell me, but after I did a comparison between Xopenex and the regular albuterol inhalers on the market I realized that it had everything to do with the price.  The Xopenex inhalers are extremely expensive and there is no generic version available.

I called my doctor to ask to have Bee's prescription changed to an albuterol inhaler.  I asked for the ProAir HFA inhaler because that is one my husband uses.  I knew that this inhaler would fit into Bee's spacer and that it had a dosage counter.  Both of these features are extremely important to me.  Bee can get the maximum amount of medicine through using her spacer.  Also, I don't have to keep track of each time with use the inhaler or worry about running low on medicine and being left with an empty inhaler.  So, I specifically requested that little red and white inhaler.

When I went to the pharmacy to pick up our prescription the pharmacy had filled the Proventil (yellow) inhaler instead.  They assured me that it was the exact same medicine.  I then asked if the inhaler had a dosage counter and was promised that indeed it did.  I came home with my inhaler and opened it to put it into our Epi pen bag.  I noticed that there was NOT a dosage counter.  Then I looked at the shape of this inhaler - it was round and did not have the squared-off shape of our other inhalers.  This means that it will not fit snugly into Bee's spacer.

I had just paid $60 for an inhaler that was not what I requested and did not meet the specifications that I had asked of the pharmacy.  Yes, I admit.  I was furious.  I called the pharmacy and after much haggling, was told I could bring back the inhaler and trade it for the ProAir.

I asked if my doctor had prescribed the Proventil inhaler and was told that the doctor simply prescribed an albuterol inhaler and that the pharmacy had filled it with the Proventil inhaler.  They did not consult with me or give me an option.

When I picked up my new inhaler I had a $15 refund on a card.  Yes, the ProAir inhaler happens to be cheaper than the Proventil inhaler.  I was about to ask the pharmacy why I wasn't given an option and why the Proventil was chosen for me without my consent.  Well, my answer is price.  The pharmacy preferred to make as much as possible off of our prescription so they filled my order with the most expensive inhaler option that they had.

So, what lessons did I learn?

• Always talk with your doctor about the options available.  If you request a specific brand of inhaler make sure that the doctor writes that on the slip so that the pharmacy cannot change your prescription.

• Always check the shape of your inhalers against the shape of your spacer.  I had no idea inhalers came in different shapes.  They sure do though!  Make sure the ones you have fit comfortably in your spacers.

• Always check the price break down with the pharmacy before you fill your prescription.  They will happily try to upcharge you or give you a more expensive medicine when a cheaper alternative exists.  Feel free to nag them until you are sure you have the best option in medication.

• Always do research before taking a medicine home.  If I had looked up the Proventil online before I picked it up I would have learned that it was the wrong shape, wrong price, and wrong specification (no dosage counter).  I could have refused to pick up the prescription and worked with my doctor to get the ProAir instead.

While we've been managing food allergies for a while I'm still new to the asthma world.  There are so many options and medicines that it is totally overwhelming.  I'm still learning!

When Your Doctor is Condescending

We had a recent ER visit with Punkin for an allergic reaction.  I wasn't sure what caused the reaction but I did have a suspicion.  I believed she had an allergic reaction to a fire ant bite.  But since Punkin has no diagnosed allergies, it was just a guess (although a somewhat educated guess).

When we entered the ER I showed the nurse Punkin's foot which was very swollen and red.  It looked like it had multiple bites on it.  The nurse agreed that it looked like she had bitten.  We both thought fire ants were a likely possibility.

After getting Punkin all settled and checking her vitals, I waited for the doctor.  I hoped it would be the same doctor we had seen before in this particular ER.  Unfortunately, it wasn't.  A lady breezed into the room and started tossing questions my way.  Then she dismissively waved in Punkin's direction and said that they would be sending us home soon with some Benadryl.

I was beginning to feel frustrated.  She had not even touched Punkin or even come close to her, much less examined her.  She offered not encouragement, no diagnosis, no advice.  So, I thought it was time for me to get in my questions.  After all, I was paying a high premium for her time and she needed to give it to me so I could do what was best for Punkin.

I asked her what had caused this reaction - if it was likely that Punkin had some underlying allergies that were not diagnosed.  I mentioned that we had a family history of extreme allergies but that Punkin had previously tested negative even though I knew that not all tests were accurate.

She then launched into a tirade against allergy testing and how controversial it was.  That was my answer to that.

Then I asked her if she thought I should worry about a secondary reaction or a rebound reaction and also what I should do in the future.

Her answer was that I needed to give her Benadryl.  Then she went on to explain all the symptoms of anaplylaxis in "doctor speak," using terms such as "stridor and urticaria" without bothering to explain any of them.  What she didn't know was that I knew what these terms meant - if only a minimal understanding - because I'm an allergic mom.

My last question was the cause of the allergy.

She extolled the virtues of keeping an extensive food diary of everything that Punkin ate to help us find patterns that might point to an allergy.

I then explained that it had been several hours since Punkin had eaten anything but had been at the pool.  I asked her if she thought it could be fire ants and if the bites on her foot looked like fire ants.

She turned up her nose and scoffingly remarked that I would need a time machine to determine that.

She said she was going to go write us a prescription for Benadryl (hello, I don't need a prescription for that!) and then she was gone.

Now, I tried to give her the benefit of the doubt that she was a brilliant doctor and just couldn't relate well to patients.  Then I said I didn't care.  I don't think she deserves the benefit of the doubt.  Harsh, I know.  She went into her chosen field to help others, heal others, educate others, and provide care.  She did none of those things that day.  Rather, she harmed someone by further destroying my faith in doctors and discouraging me greatly.

There was no reason to be condescending to me, throwing technical terms in my face and refusing to answer my questions.  Her education does not make her somehow better than those she treats.  She should demonstrate caring and take the time to answer my questions honestly, even if the answer is, "I don't know."  Telling me that I need a time machine is sarcastic, hurtful, and dismissive.  Refusing to actually examine my daughter while ignoring my questions is truly arrogant.  Doctors should never forget that they are treating people and not just problems.  They need to make time to heal the worry, doubts, and fears and not just see people as a medical diagnosis that needs treatment.

Sadly, it's not the first encounter I've had with a condescending doctor. 

So what do you do when faced with a condescending doctor?

• Pick a different one - If you can change doctors or take your business and your health elsewhere, then do.  I have left practices because I refused to have a doctor talk to me like less than a human.  It's ok to "fire" your doctor.  There are plenty out there who would be glad for your business and happy to help you.  Find the doctor that you feel cares about your or your child's best interests. 

• Ask questions - If a doctor will only talk in "doctor speak" rather than plain language, don't be afraid to question and question and question.  Keep asking those questions until you get an answer that you can understand.  And question every person that you encounter from each doctor, nurse, or assistant.  Ask questions until you feel that they have been answered.  You don't need to apologize for wanting to understand your or your child's medical problems as completely as you can.

• Speak up - There have been times when I disagreed with a doctor or didn't want a particular nurse coming into our room again for one reason or another.  I voiced my concerns calmly and politely.  I have refused certain testing in favor of taking a different route and I have forbidden nurses from entering our room again.  It's ok to disagree and it's more than ok to tell them that you do. 

Fire Ant Allergy and ER Visits

I thought we had been doing pretty good by avoiding the ER since December.  Unfortunately we had another quick trip to our local ER in June.  Little Punkin was swimming at our neighborhood pool with my husband.  She was walking around the edge and playing in the lounge chairs.  There were quite a few ants nearby due to all the sticky spills around the outside of the pool from all the recent pool parties.

As they were leaving the pool my husband noticed that she was very itchy and suddenly became very cranky.  He thought she was just tired and hot.  He brought her home and I placed her in a warm bath while I rinsed out her swimsuit.  When I pulled her out of the tub to wrap her in a towel, I noticed that she was very red.  Within seconds she was covered in a bright red, itchy rash.  She began to shriek as I tried to dry her off.  The red rash turned into huge red, raised hives that were welts covering her entire body.  I noticed that one foot was especially swollen and red.

We gave her some Benadryl and waited for the swelling to go down.  It was getting worse every second and her screaming was starting to scare me.  She was thrashing around and trying to scratch her skin off.  I quickly put on her diaper and tried to calm her as we waited.  Then she got scary quiet as the redness kept spreading up her torso and onto her face and neck.  That's when I began to panic.

I told my husband that I thought I should take her somewhere to monitor her oxygen levels and heart rate.  He agreed so he dressed her while I grabbed the diaper bag and loaded the car.  Soon we were on our way to the local ER which is just across the highway from our house.  By the time I walked in the doors, Punkin was a mass of raised welts and the color of ripe strawberries.  The nurse immediately took us back to a room, took of her jammies, and started checking her vital signs.

Thankfully, Punkin was stable and her breathing was not affected.  We stayed in the ER for monitoring for a little while.  During this time her rash began to get better and the swelling went down.  We were sent home with instructions to give her Benadryl for the next several days and watch the rash carefully.

While we're not sure what caused this severe reactions, we do believe that she was bitten by a fire ant at the pool and that caused her to become itchy and swollen.  We'll be following up with our immunologist to see if we can determine the cause of her reaction and see if there are other insects, foods, or environmental allergens that are triggers.

What is an allergy to fire ants?

It does not mean that you have an itchy or uncomfortable bite or that the area around the bite is swollen, red, or tender.

A true allergy to fire ants will manifest itself in:

• Hives on other parts of the body
• Stomach cramps, diarrhea, or vomiting
• Difficulty breathing
• Swelling of the tongue or lips

The allergy can progress to anaphylaxis which causes:

• Dizzyness
• Drop in blood pressure
• Cardiac arrest
• Closure of the throat

Repeated exposure to your allergen can cause you to have a more severe reaction each time you are bitten.

We will have to monitor Punkin closely and try to avoid fire ants in the future.  We have already seen a fire ant allergy in our oldest daughter Curly.  Her reaction has been more severe each time she was stung.  The last time she had a sting, it took 3 days for her rash and swelling to subside. 

The Questions Every Allergy Parent Gets Asked

If you are an allergy parent you find yourself explaining about the allergies at every turn.  You feel like you have a very limited vocabulary.  Your most common phrases are "What's in that?" "Don't eat that!" "We can't have that." "We have food allergies."  You recite these over and over and they become your mantras.  You can recite your list of allergens in your sleep.

And as you explain about the allergies you find yourself being asked the same questions over and over and over again.  You patiently explain and discuss and try to educate.  However, you sometimes find yourself saying some little "snappy comebacks" in your head.  Not that you would ever say them aloud.  But you know you've thought them.....

Will she outgrow her allergies?
You must have me confused with someone else - like God, possibly.  He's the only one that would actually know that answer.  My doctor doesn't even have a clue.

Can she get shots for that?  Is there treatment for her?
If she could, don't you think I would be doing that!?  I mean, if there was a known cure I would be the first one to sign up.  

What happens when she eats that food?
She dies.  Truly.  I don't even want to think about it.

Can she even be in the room with that food?
Do you think that's a good idea?  We don't really have a death wish.

Can she touch that food?
We like to live dangerously and come as close to an allergic reaction as we can without actually ingesting the food.  Why would we touch that food?  Really?  Not smart......

Where did her allergies come from?  Do you have allergies?
Again.  I'm not God.  I have no clue and neither does my doctor.  And no, not a single person in our family has diagnosed food allergies.  Can you say unexpected surprise??

How did you figure out her allergies?
One anaphylactic reaction after another.  No, it wasn't pretty.  Trial and error when the error could be your child's life is not what I would call fun.

What can you eat?
The foods she's not allergic too.
Real food.  Healthy food.  Fresh food.  Food that you should try too.

Don't you miss (insert favorite allergic food here)?
Wouldn't you?  But isn't my daughter's life worth giving up a cheese pizza or a PB&J?

No, no, no.  These thoughts never escape.  But I do think them and I do tire of the questions. 

Do most people know much about food allergies?  No.  Do most people ask in a curious and/or compassionate way.  Yes.  Therefore, I try to educate and respond in kind.

So, here's what I actually say:

Will she outgrow her allergies?
We don't know but we certainly hope she does.  Our doctor did say that her chances are somewhat small because her allergies are so very severe.

Can she get shots for that?  Is there a treatment for her?
No.  At this point she is not a candidate for shots or any type of treatment currently being tested.  Her allergies are too severe as are her reactions.  We hope there are more options in the future.
 
What happens when she eats that food?
She has life threatening food allergies.  So when she eats an allergen she breaks out in hives, experiences swelling, and her throat closes, making it difficult for her to breathe.  She can go into anaphylactic shock.

Can she even be in the room with that food?
While she can be in the room with some of her allergens, we try to practice strict avoidance whenever possible. 

Can she touch that food?
No.  In the past when she's come into contact with an allergen she has broken out in hives and begun having an allergic reaction.  She has contact allergies which means that she can't even come into direct contact with her allergen and remain safe. 

Where did her allergies come from?  Do you have allergies?
We don't know.  No one in our families have allergies.  The cause of food allergies is debatable and is still unknown. 

How did you figure out her allergies?
Unfortunately, through her having allergic reactions as an infant and then through later testing (and later allergic reactions).  It's a very slow and very scary learning process.

What can you eat?
We have lots of choices and we've developed many safe recipes.  We stick to meats and veggies and she can have a few fruits and a few grains.  We do most of our cooking from scratch to keep her safe.

Don't you miss (insert favorite allergic food here)?
Yes.  But the sacrifice of those foods are worth it for our family.  Plus, we sometimes get a date night out to enjoy all of our old favorites (hello, mac and cheese, frozen yogurt, and pizza!).

So, if you're an allergy parent you've probably fielded those questions and more.  And yes, while it is tiring, it is important to help educate those out there who are not familiar with food allergies.  Just think, you're doing a service for all of us.  

Food Allergies and a Visit to Sea World

We live in a fun city that has lots of entertainment and dining options.  Unfortunately, we don't take advantage of many of them.  Very few places are safe and many things are not worth the risk.  However, we have found one place that we visit frequently - Sea World.

How do we safely visit Sea World with our food allergies?

It all began with a phone call to the corporate office of Sea World.  I explained our food allergies as well as the contact allergies and my concerns of cross contamination.  They provided a letter that stated our medical condition and gave us permission to bring our own food into the park.  Now I enter Sea World with our little soft-sided cooler with allergy-free food and we don't have to worry about trying to find something safe to eat inside the park.  In fact, we don't even go near any of their restaurants.  We stick to the shows and the rides.

So, we can get into Sea World with our allergy free food.  But what does a visit look like from my perspective?

Here are the details from our last trip.......

I spent an hour preparing and packing food for our trip.  I divided everything into smaller containers (because they don't allow large containers) and I made sure I had more than we would need.  Then I filled water bottles for each person and started loading the car.

We arrived at Sea World with a double stroller, a soft cooler, our Epi bags, and an armful of waterbottles and towels.  It felt a lot like moving.

Then we had to go through the always fun (and super cheerful) security check.  Did you notice the sarcasm?  The guard took his little silver stick and began to dig through my cooler.  Then he started pulling everything out and saying, "Nope you can't have this.  No, you can't have that."  I started to explain to him about the letter when he interrupted me and told me I had to have a "card."  What on earth?  He told me I had to go to guest services.

I was completely annoyed so I got back in a different line with another guard.  I told him about the letter and showed it to him.  He waved me right on through.  Unbelievable!!!

We were finally inside the park.  As we walked through the crowds I kept Bee right next to me, holding on to the stroller with one hand.  This is the conversation I had in my head as we walked to our first show.

Ohhh, ice cream, ice cream.  Move left!  Yikes!  Yikes!!

No, no, no!  Nachos.  Nachos coming.  They look drippy.  Careful, careful!

That guy is eating turkey leg.  Ok, safe.  Very gross.  But safe. 

What is this coming?  What is that boy holding?  It's a bag.  It's chips.  It's Nacho Doritos!  Oh, panic, panic, panic.  Move over.  

Cups, cups, cups.  Those people have cups with spoons.  What's in the cups?  Ice cream?  Ice cream?  Nope, just frozen lemonade.  Deep breath.  Deep breath.

This is what goes through my head as we walk around the park.  I notice what every single person is eating.  Sometimes I throw my body between Bee and the person walking by if I see ice cream or something with cheese on it in their hands.  I have mini panic attacks and silently scream in my head as I count the unsafe foods that pass us.

Show time is not much more relaxing.  I sit with Bee either right next to me or right in my lap.  I watch everyone who sits around us.  When I see that they have snacks I watch until I can determine what they are eating.  If it's unsafe I have all the kids shift around so I can keep Bee away from those foods.

Neurotic?  Probably.  But we've stayed safe at every visit and I know every. single. food that you could possibly purchase at Sea World.  However, my kids can't hear my crazy internal conversations and panic moments, so they have an absolutely wonderful time.  And for a few hours I feel slightly normal as I wander through the crowds and enjoy the shows.  We look like any other family - well maybe except for the part where I fling myself in front of people as a human shield to keep ice cream away from Bee.  We're almost normal..........

Epi Pens and ERs

Thankfully Bee doesn't have many ER visits.  However, her most recent ER visit was in December of last year.  That was not a fun day.

Bee was spending the day with her grandparents at a local hotel.  They were eating at a restaurant in the hotel where they know the chefs.  They always prepare gluten free oatmeal for Bee.  This day they were eating in a different dining room but should have been eating the same food.

For this special day it was meet Santa during breakfast and the kids were very excited.  Not long after eating, Bee began to get itchy and rashy.  She was sneezing and coughing.  When my dad took a close look at her, he could see that her eyes were beginning to swell.  He called me to tell me what was happening as he took her back to their hotel room to give her some Benadryl.

That's when her eyes began to swell shut.  I told him to give her the Epi pen right away and that I would be at the hotel in a few minutes to take her to the ER. 

When I arrived he rushed her out to me and I quickly put her in the car to drive to the ER where my husband was waiting for me.  I ran in as the nurses opened the door and put her directly into a room to start an IV line with Benadryl and steroids.  Her entire face was swollen and puffy and her eyes were almost swollen shut.

I spent the next 4 hours watching her sleep as the swelling slowly came down and her breathing became calm and steady.  It took 3 days for all the swelling to finally disappear.

The worst part of our ER visit was that we have no idea what caused her reaction.  We can only assume that the hotel must have cross-contaminated her food or prepared something incorrectly.  But we will never know what it was.

So now I worry that there could be another allergy that I don't know about yet.  Or maybe it's just because people were not as careful as they should have been.

Our Allergy Journey - Year 5

Bee celebrated her 5th birthday this past spring.  It's hard to believe that our little allergy baby is growing up and will be a Kindergartner next year! 

Before I talk about where we are today, I want to take a look back on where we've been.  We've come so far in our allergy journey but we still have such a long way to go.

Bee was diagnosed at about 8 months old even though I had suspected that she had some health problems since she was about 6 weeks old.  After our initial diagnosis of severe food allergies we've spent years learning about food allergies and discovering her additional allergies that were not a part of the original test.  We've been through various tests and have experienced many severe allergic reactions.  We have changed how our entire family functions in order to keep our allergy baby safe.  It has been a long, difficult, and emotional journey to where we are today.

Today Bee is a happy and healthy 5 year old.  She loves bugs - especially the grasshopper and the roly-poly.  She is just learning how to read and she enjoys books when she can make herself sit still.  She loves to dress up and can be found dancing through the house in one of her fancy costumes.  She loves music and is always whistling, singing, or composing new pieces on the piano.  She is quite the creative little mind and is the "other mother" at our house; she loves to take care of her younger sisters.

• At this point, Bee has not outgrown any of her allergies.  It's so discouraging to think about the hope that we had when she was a baby.  We were told that many children start outgrowing allergies around age 5.  That hasn't been true in our case.  

• We still experience severe reactions.  Bee had her latest ER visit last December for anaphylaxis.  Her eyes swelled shut, she had trouble breathing, and she was red and itchy all over.

• We could possibly have unknown allergens.  We're not always sure what causes Bee's reactions and some of the causes might still be unknown - or could be the result of cross-contamination.

• We still eat most of our meals at home.  Even though many restaurants are allergy-friendly or at least allergy-aware, we still choose to eat mainly at home.

• Bee has begun to develop asthma.  When she runs for a long time or is very active she sometimes becomes short of breath.  She also has difficulty breathing and taking deep breaths when pollen counts are high.  This means that we keep an inhaler close at hand.

• Bee is showing signs of environmental allergies.  She has yet to be tested for these allergies but I'm certain that they are there.  When she spends a day playing outside, she spends the next day recovering-with a stuffy or runny nose and a persistent cough. 

• Bee is slowly learning to be an advocate for her allergies.  She is able to tell others about her allergies and knows what foods to avoid.  Even though she's only 5, she is articulate and outspoken and not afraid to try to explain her allergies to others.

• Bee has accepted her limitations.  I'm so blessed that Bee (and all of my children) joyfully accept that our lives are very different.  I try to cook and bake alternative meals so that they don't feel left out when going to different functions or when having friends over to our house.  But it's still glaringly obvious that we have some strict limitations.  However, all of my children do whatever it takes to keep our family safe - even when that means turning down a cookie or saying no to a particular activity.

I still answer the same questions over and over again about our allergies.  I still have the same worries and fears.  I still battle fear when we got out to different places and I still fight discouragement that we have had so little improvement with Bee.  I stress about what the future holds and I still wonder if things will ever look at least a little bit more "normal" here.  

So, even though it feels like so little has changed, I see the improvement in Bee.  She's a bubbly little person who looks perfectly healthy.  While the food allergies are still there and we maintain our allergy-free lifestyle, things have changed and she is thriving despite the may allergies and limitations.  We are very blessed indeed!

Allergy to Mustard

We suspect that Bee has a new allergy - mustard.

While this shouldn't actually come as a huge surprise, I was disappointed that another food had to be removed from our list.

Mustard comes from a seed and Bee seems to be allergic to most other seeds.  Therefore, it would make sense that she could not have mustard either.

She has eaten foods containing mustard in the past and has never had a problem - until now.

This past week I made our honey dijon chicken recipe that calls for Dijon mustard.  We sat down to dinner and after 2 bites Bee declared that she did not like dinner and wasn't hungry.  This was very unusual for her, especially since she had just said she was hungry.  I looked very closely at her and could see her lips and the skin around her mouth starting to swell.  A few minutes later her mouth, cheeks, and face were covered in huge hives.

At that point my husband and I pushed our chairs back from the table, grabbed Bee, and ran to the bathroom.  We washed her face and her mouth and scrubbed her hands.  Then we administered Bendaryl and covered her hives with cortisone cream.  We put Bee on the couch with us and we all sat around and watched her, waiting to see if she had difficulty breathing or any additional swelling.  Thankfully after 30 minutes, the swelling went down and the hives started to fade.

That's when I thought about what we had eaten for dinner and I had the nagging feeling that it was something in the chicken recipe.  Since that recipe only has a few ingredients it was easy to guess that it had to be the mustard.

So, no more mustard for us in any of our recipes.  It's just another ingredient that we now have to watch for as we read labels.

I had so hoped that her seed allergies (which have always seemed less severe) would start to recede.  I guess we now know that they are not getting better but may in fact be getting worse.

Now we will be avoiding flax seeds, poppy seeds, mustard seeds, sunflower seeds, quinoa, chia seeds, and sesame seeds.  Ironically, hemp seeds are not a problem for us as our family drinks hemp milk.  Why is this possible?  I don't know....Food allergies don't always make sense to me!