Anyone Know a Good Mother’s Intuition Repair Man?

You would think that I would know by now what an allergic reaction in an infant looks like.  You would think after all we have seen and experienced with Elena, that I would be an authority on the subject.  In fact, I have received countless emails and phone calls from friends asking, “Is this a food reaction?” as they describe symptoms their children are exhibiting or send photos of rashes.  We explained away so many symptoms when Elena was an infant.  If only we had known then what we know now, right?

The problem is, these symptoms are never black and white.  We were sure that Olivia had food allergies when she was a baby.  Ironically, she was the only one I was sure about, and as it turns out, she has none.  (See details of Olivia’s story here)  Because I was so wrong with her, I was hesitant to make the same assertion about Wyatt.  I didn’t want my hypersensitivity to lead to another incorrect assessment.

Sure, he was fussy.  I just assumed that was colic.  He was rashy, but so was Olivia.  He scratched at his head when he was upset and he spit up a lot.  I had logical explanations for all of it that did not include food allergies.  There is no reason to jump to conclusions.  Just because we have one child with food allergies, does not mean we are destined to have more.

It wasn’t until Wyatt’s 4 month well visit that it all hit me like a ton of bricks.  I had my little list of “concerns” all ready for the occasion, like any other well visit.  The nurse showed a little bit of concern after charting Wyatt’s weight because he had dropped from the 50%ile to the 20%ile.  When the Dr. came in and asked if I had any concerns, I started nonchalantly listing them, expecting the usual, “that’s perfectly normal” reassurance.  This time he just listened without saying much.  I felt myself connecting the dots as I was speaking and listing the other pieces of the puzzle that I had not included on my list, but now seemed so obvious.

He cries a lot, especially in the evenings.

He seems to eat frequently and spits up a lot.

He has rashes on his torso and eczema that never goes away.

He still has terrible cradle cap.

He is only soothed by bouncing on the yoga ball (exactly like Elena as a baby)

He itches.

I know he itches because he squirms all the time and scratches up his head and face when he’s in the car.  Otherwise, I never put him down because I’m afraid he will cry and scratch.  Until this moment, I convinced myself the scratching was just because he hates the car seat, but I know better.  He itches.  Of course he itches.

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Wyatt’s scratching made him look like he had been in a fight with a bobcat every time he rode in the car.

Our pediatrician then stated that he had never done an allergy test on a 4 month old.  The earliest he had done the test was 6 months.  I just held my breathe.  Elena’s allergy test at 9 months was horrific and I’m still not over it.  (Elena’s story here)

He asked if I thought I could cut out all soy and dairy as an experiment.  I assured him that would be no problem.  That is one thing I know how to do all too well.  The next morning, I began my and Wyatt’s dairy/soy free lifestyle and oh my.  What a difference.  Within a few days, he was less fussy and spitting up less. By the end of the first two weeks, I swear he was a different baby and had grown more than he had in the previous month.

Have you ever been so sick, but not realized it until you felt better?  This happened to me with my thyroid.  I found out in 2007 that I had Hashimoto’s and my thyroid was in bad shape.  I started taking Synthroid and it wasn’t until I started feeling better that I realized how horrible I had been feeling before.  The same thing happened here.  After Wyatt became himself, I realized he had been sick.  Even looking back at photos that at the time looked adorable to me, all I see is a sad, sick little baby.  He was always exhausted and itchy and miserable.  He would smile, but only if the time was just right.  Although I didn’t know it at the time, other family members had concerns about his lack of activity and alertness.  Now I question whether that viral rash he had a few months ago was actually a virus.  Perhaps it was a reaction to something I had eaten.

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After the dairy/soy detox, he is so happy and lively and active.  The rashes on his torso and his cradle cap disappeared.  He still has some eczema at the backs of his elbows and knees, but it has improved.  He is much happier to be put down and play and he naps.  He also spits up far less than he used to.

These photos are from “before” I eliminated dairy and soy.  Notice how tired and weak he looks.  Anyone who holds him is usually covered in spit up and even when he did smile, he always had some kind of rash or redness on his face:

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These are Wyatt’s “after” pictures.  He is so much more alert and happy now.  He is active and loves playing with his sisters and with toys.  Also, the matted hair from his cradle cap is now smooth and silky.  He is truly a new baby:

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This isn’t to say that Wyatt’s food allergy story is finished by any stretch.  We still don’t know if he was reacting to the dairy, soy, or both.  He could also have reactions to other foods.  He does still have some rashes and spitting up.  Also, since I rarely eat peanuts, tree nuts, or eggs due to Elena’s allergies, we don’t know if he would react to those.

Even though we don’t have all of the answers yet, I’m so glad my eyes have been opened.  I’m sure we will do the testing soon after he turns 6 months old, so hopefully we can start figuring out what his food allergy profile will look like and hopefully it won’t be too different from Elena’s.

Most of all, I am ready for this sweet baby boy to feel good and be healthy.  I’m heartbroken that it took me this long to put the pieces together.  I always see stories about these superhero moms who sense that something is wrong with their child even when everyone else is telling them it’s all in their head.  They turn out to be right and good old Mother’s Intuition is credited another success.  Where was my Mother’s Intuition?  It shouldn’t have taken that much.  For heaven’s sake, this is my second time around with this scenario.  Why didn’t I know until he was 4 months old?  Every time I had an inkling that it could be food allergies, I followed it with, “but you know, I thought Olivia had food allergies too and look at how wrong I was”.  Oy Vey!!!

All I can say is, Wyatt, I love you and I got this.  Starting now.

Preschoolers: They put the AW in FAAW

I had the honor of speaking to the delightful children at Elena’s preschool yesterday for food allergy awareness week.  The kids were excited and energetic and they participated in every aspect of the presentation.  What a blessing to be able to interact with this age group.  By this I mean, thank goodness they were not middle schoolers.

These kids were so smart and fun.  One of them even got my goat when I asked who knew what hives are.  He answered confidently, “They are where bees live.”  Talk about smart.  I had to concede that he was indeed correct, but there is at least one more meaning to the word.  I also loved it when one kiddo told me he was allergic to all yucky food.  Well played, little one.

We began by talking about what allergies are and what kinds of things people can be allergic to.  The kids came up with quite a list, including cats, dogs, pollen, bees, grass, poison ivy, smoke, and of course, germs.  We talked about what can happen if someone eats a food they are allergic to, which of course spurred a discussion about not eating dogs and cats if you are allergic.  Seriously, if you haven’t ever held audience with a group of preschoolers, you are missing out on something special.

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Two of our favorite food allergy books…and my toes. Oops.

We read ‘Cody The Allergic Cow’, which opened up to conversation about medical alert bracelets and Epipens, both of which Cody has.  The book is absolutely perfect for this age group and there are others in the series, which I will be getting my hands on soon.

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We use the Ergo pouch for carrying Epipens and Benedryl. This is Elena’s customizable AllerMates Bracelet.

One thing I found interesting was the kids response to the idea of talking about allergies with their allergic friends.  When I held up the bracelet, they were very interested.  I asked what they could do if they saw a bracelet like this on a friend.  Should they maybe ask their friend about it?  Both groups I spoke to said, “NOOOOOOO”.  I’m not sure if they thought it would be rude or unkind, but the initial response was that they should not talk about it.  I let them know it was OK to talk about it and that they should always ask questions if they are wondering about a food allergy.  I asked the children who had announced they have allergies if they would mind their friends asking questions and, of course, they said they would not mind.  What better way to learn how to help out your friends than to ask them what is safe and unsafe for them?  I hope that giving them  “permission” to talk about it will open up the doors for better understanding.  Although, I must say, these kids were pretty well informed already.

Next we played a little game of, find the hidden allergen.  The allergens I chose were not so well hidden, but keep in mind the age group.  I held up groups of three foods and the kids identified each food.  The sweet potato and rice cakes gave them the most trouble.  Then I asked them, which of these foods is hiding milk/nuts/wheat/etc.  They did really well with this and it was fun to see them so engaged.

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Find the hidden milk.

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Find the hidden wheat.

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Find the hidden tree nuts. (yeah, ok. Not so hidden. I told you it was easy.)

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Find the hidden peanuts. (I called this peanut butter and covered up the label because I knew they would be familiar. With an older group, I would have just used it to find the hidden soy.)

Since all of the allergies in the school are within the top 8, I was able to do a little taste test.  We talked about safe alternatives to common foods.  Just because your friend can’t eat your “bread”, does not mean they can’t eat any “bread”.  I showed them a bag of Enjoy Life chocolate chips and told them they are made with food allergies in mind to be safe for people with certain allergies.  Then they each tasted a few and I asked them if they tasted the same as the ones they are used to eating or different.  Most said the same and a few said different, but they all wanted more.

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Half a bag for the kids to share and half a bag for the presenter. Sounds fair to me.

I left them with a mission for the day.  Each of their teachers got a stack of helping hands.  I challenged each student to earn a helping hand by doing something to help keep their classroom safe for friends with food allergies.  Together, we came up with this list of things they could do…

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-Wash hands after eating.

-Keep food in food areas.

-Clean up food areas after eating.

-Never share food.

-Do not touch other people’s food.

and my favorite…

-Don’t feed your friend something they’re allergic to.

Kudos kiddos!

I hope they all earned their helping hands.  I enjoyed the talks so much and the enthusiasm of these wonderful students is infectious.  A great big thank you to CIC Preschool for letting me share this important information with them and for keeping our children safe every single day.

School Lunch: Keeping it simple.

School lunches are a challenge for many parents.  Especially those who find themselves attending a school that enforces mandatory exclusions to protect other children from allergens.  If you are not used to avoiding certain foods, it’s even more difficult to pack a lunch without them.

One of the most common questions I get when I tell people what all Elena is allergic to is, “What do you feed her?”  In fact, that’s the question I had in my own head when I first got her diagnosis.  We started with the basics and had a lot of fun with it.  We do a lot of “cutting board” dinners in the summer.  I just go to the cutting board and prep all kinds of produce and sometimes bread.  It’s simple, quick, healthy, and I don’t have to heat up the oven or stove at all.  We do this a lot using muffin tins, ice cube trays, or other sectioned containers.  The girls love it.

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One of our muffin tin lunches last summer. I can’t believe how little the girls looked.

The lunches I pack for school are very similar to this.  I love doing it this way because I can just throw in whatever we have in the fridge.  She likes the variety and she rarely has the exact same lunch twice.  I always give her a juice box and usually a fruit puree pouch, which we call “smoothies”, or “moosies” if you’re Olivia.  Here are some of Elena’s actual lunches she has taken to school.   You won’t believe how simple it really is to pack an allergy friendly meal.

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This is a Hummus dipper lunch. Get a single serving pouch of safe hummus, or spoon some into a small container. Then all you have to do is give some crackers, veggies, or other dippers. Of course, our usual “smoothie” and juice box are here as well.

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Bento style lunch. Fruits, veggies, craisins, and pasta in this one. Anything goes.

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Pasta salad with veggies and mixed fruit. Yes, the pasta is heart shaped. I usually just use bowties or penne.

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Here we have edamame, berries, crackers, tomatoes, and turkey jerky bites. Ok, so it’s not ALL healthy. The tomatoes are in a silicone cupcake baking cup. I use them as dividers a lot.

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Obviously, this one was from Valentine’s Day. Cucumbers, red peppers, and a sandwich. I don’t remember what kind of sandwich this was, but probably either turkey or sunbutter and jelly.

I also always try to throw in a special napkin.  I get character napkins from the party section at Target or use the extra party napkins from various celebrations.  She really likes having a colorful napkin, since we don’t typically use those at home.  Elena also has a very special way of reminding me to send a fork.  I owe a big apology to her teachers for those days I forget.  I know it doesn’t slow her down one bit…

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Food Allergy Awareness Week Challenge

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“FOOD ALLERGY AWARENESS WEEK 2013…WOOT WOOT!!!!!”  Yeah, it doesn’t quite have the same ring as “Spring Break 2013…WOOT WOOT”, but humor me.  Food allergy awareness week is May 12th -18th.  Well, obviously, every week in our house is FAAW, but for one week it hits your house too.  Since people who have food allergies are already pretty aware, my goal is to help others get a glimpse into our world.  This will be quite a challenge, and most people will not have any interest in participating, but I can’t wait to hear from those who do.

I saw an idea in a post on my support group’s message board (thank you, PAK Charlotte) for a subtract campaign.  The idea is that people without food allergies subtract a common allergen from their diet to help gain an understanding of what it’s like.  Sounds crazy, right?  Why would anyone want to do that?  I’ll tell you why.

The hardest thing for most of us to understand is that food allergies are about more than just food.  By eliminating foods, we also are limiting other experiences.  It’s something that is hard to grasp until you try living it.

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The idea of this is not deprivation.  If your kids are in a situation where they really want a special treat that they would normally get, go ahead and let them have it.  Just make a mental note of what that situation might have been like if you had to tell them no because the ingredient list was not available to you.  If you can’t think of anything to fix for breakfast that does not have the allergen you chose, go ahead and go with what you would normally eat, but take a moment to consider what it would be like to face that obstacle every day.  Remember, the idea is to increase awareness and empathy, not to suffer deprivation.  It should be an educational challenge, not a slow form of kiddy torture.

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This is not the goal at all.

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Owl be so sad if you let this happen.

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For crying out loud, give this poor little man the goldfish cracker.

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I think we’re missing the point here.

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“No cheese and sour cream with dinner? Am I in trouble?”

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Somebunny is really sad you didn’t give her cow’s milk today.

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This is taking it way too far.

The scale of your “subtraction” is completely flexible.  You might decide to eliminate one or more of the top 8 allergens (egg, dairy, peanut, tree nut, wheat, soy, fish, shellfish) for a week, a day, or for one dinner.  Obviously, if your kids don’t really eat shellfish, it won’t increase anyone’s awareness much to choose that one.  Choose something you think you all will notice, then talk about it.  Let them know you want them to think about what it feels like to be careful about the food they eat and the food around them.  Again, don’t make them do anything they’re not ready for.  If they need the ranch dressing in order to eat their vegetables, give it to them, but let them know it is not safe for people with egg, dairy, and possibly soy allergies.  Pay attention to labels and think about what it would be like to have to read every single one every time you go grocery shopping.

Don’t think I’m getting off easy.  I’m going to do it too.  Even though we have eliminated 4 of the top 8 food allergens, there are many families with far more restrictive diets than ours.  We will be eliminating one more.  I’m going to go with one that seems difficult, as I’m asking others to do.  Goodbye wheat!!!!  I will let you know how it goes.

I’m not worried though, I’ll just stick to my regulars…hummus and crackers.  Wait, no crackers.  I guess I’ll just do a simple pasta salad.  Errrrrr, no that doesn’t work.  Do you expect me to survive on bread and water alone?  Right, no bread.  Oh well, I guess I’ll just have a beer…DOH!

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All kidding aside, the most important thing is to talk about the experience.  Talk about it with your family and with anyone you know who lives with food allergies.  Ask questions about what they would do in certain situations you faced during your challenge.  Let them know what you found difficult and what you found interesting.  You might even notice some positives, like knowing every ingredient in everything you feed your family.  We love hearing those too.  Visit Food Allergy Research and Education (FARE) for resources and information to get the conversation started.

Use the comment section below to share your experience.  Even if it’s just one meal or if you thought about food allergies in a situation you normally would not think twice about.  I would love to hear your plan and your comments as you go.

* A special thank you to our friends for letting me use sad face images of your sweet babes.  They are all precious in any mood.

Shame On Me

I have this big idea to have other people in our lives write some perspective blogs, telling about their experiences with food allergies, either through their interactions with us or with others.  When I was thinking about these perspectives, I kept hoping our guest bloggers will be edgy and raw.  I want them to tell what they really think and how they really feel.  I want them to put aside all of the right answers and supportive things to say, and just tell it like it is.  The more I thought about this, the more I realized I haven’t done that myself.

I have touched on some of our struggles and many of our accomplishments with living with food allergies, but I haven’t really written a dirty, honest blog about what it feels like to be on this side of it all.  Here goes…

There are a lot of things I HAVE to do because I have a daughter who could die if she is exposed to certain foods.  I HAVE to keep her safe and I HAVE to help her live a normal life.  These aren’t fun undertakings that I have taken upon myself because I am an exceptional mother.  These are requirements.  I’m not going above and beyond when I send her to a party with a safe cupcake.  I’m just trying to meet the requirements of being a food allergy mom.  Is it fun?  Hell no.  Is it going to make her the happiest kid on the block?  Let’s just say, it’s a good day when she doesn’t break down because her cupcake was too different from the others.  Luckily, this usually happens after the fact when she is reflecting on her day.  At four years old, she already knows not to draw too much attention to the differences in front of others.  Is this something I have done to her?

I find it interesting when people say things like, “you’re so good at this” or “you were made for this” or even “I don’t know if I could do it”.  Really?  Was I?  Was this somehow meant for me?  Was my child supposed to have this horrible life threatening allergy to something she can’t get away from because I have a knack for it?  If not, then it must be by chance.  Did we just get lucky that I happen to have a skill set that enables me to keep my daughter alive?  It’s strange to be told you are good at something that you don’t want to be doing and that you have no choice other than to succeed in.  If I don’t do it, she could die.  Trust me, you could do it and you would be good at it too.  It’s not a gift.  It’s just enduring a curse.

I’m not going to say too much about the “theorists”.  You wouldn’t believe the conversations in which people tell me her food allergies were probably caused by something I ate when I was pregnant or something I didn’t eat or being too clean when she was a baby or not clean enough.  The theories go on and on and usually place the blame on the mother.   All I can really say about this is…DON’T DO THAT!!!

Here comes the part where I shatter your theories about me being made for this.  I hope the people my daughter encounters in the world are nothing like me.  I had so many ideas about what a “food allergy kid” is like.  There was a time when the mention of food allergies would have evoked a very specific image for me.  Food allergy kids are nerdy and sickly.  They probably don’t have the best social skills and they’re afraid of everything.  They’re like the snot bubble kid from the movie Little Giants or [insert your own generational reference].  Don’t even get me started on the kids with Asthma.  What kind of word is that anyway?  Shouldn’t there be some vowels in the middle?

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Now that I have a child with anaphylactic food allergies to egg, dairy, peanuts, and tree nuts, as well as asthma, I no longer think this way…is what a better person than I would say.  I just can’t seem to get away from the social stigmas that I have attached to these things.  When we found out about her asthma, I was pretty terrified.  I had read so many stories about split second decisions where an allergic reaction was mistaken for an asthma attack and an inhaler was used rather than the Epipen.  The outcome is usually very bleak.  As bad as that was, I still held on to my social concerns.  Now she’s going to be carrying around an Epipen AND and inhaler.  We might as well just tattoo, “bully me” on her forehead.  This is really only a valid concern if she encounters people who think like……me.  Is this a good time to suggest the media is to blame?

I need to clarify that my daughter in no way fits the profile of a “food allergy kid” that I held for so long.  I have met many other children with food allergies since she was diagnosed, and they don’t seem to fit it either.  I’m ashamed that it took being her mother to make me see how ridiculous it was to assign all of these personality traits to this medical condition.  How closed minded of me.  This is where the “theorists” would say, “Maybe God knew you needed this experience to change your perspective.”  Seriously, don’t do it.

My fear is that others like me will never have a change of heart.  Most people will never have a child with severe food allergies.  If that’s what it took for me to break a stereotype I didn’t even know I had, what hope is there for her?  My hope is that she encounters people in her life who are better than I am.  So far, I think she has.

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 Elena,

You not only hold my heart, you have also changed it.    

Love, Mommy

Bittersweet Best Case Scenario

Well, the time has come to have our youngest, Olivia, tested for food allergies.  I have suspected an egg allergy for a while, but it’s so hard to trust my emotionally charged observations.  Olivia does have occasional minor flare ups of eczema, but not as bad as Elena did. I have suspected egg would give her trouble based on reactions I have seen after eating egg myself, then nursing.  It’s always hard to tell exactly what is going on with any baby, though.  A diaper rash can be caused by any one of about 30 things, a runny nose can mean they are sick or not, spit up happens with and without explanations, and teething can look like anything else under the sun.    How can I be sure any symptom was caused by the egg I ate?  It’s easy to hold on to little rays of hope, but also scary to go into an assessment clinging too tightly to that hope.   

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This is a photo of Olivia about 6 hours after I ate egg. Her cheeks became red and she got some small bumps on her face.

We decided to go ahead and have Olivia tested for the top 8 food allergens and goat’s milk (thinking ahead to her first birthday transition).  We did not have any solid evidence, but living in a house that is free of egg, dairy, peanuts, and tree nuts and not ever eating fish or shellfish due to age doesn’t give a lot of opportunity for exposure.  We wanted to know what precautions are necessary for Olivia, rather than just imposing on her the same ones we use for her sister and hoping for the best.

We went in for the testing and our allergist decided to go with the skin test rather than the blood test.  Whew!!!  Seeing as how the blood test we did on Elena at 9 months was one of the most horrific experiences I remember, I was glad to hear this.  Olivia did very well and, although her little body jerked with each of the 11 pricks on her back, she never made so much as a whimper.  Actually, I should not say never.  She screamed hysterically when they were weighing her, but who can blame her for that?  I can relate.

Well, ladies and gentlemen, the moment of truth.  What you see below is a textbook case of an allergic reaction on the histamine (control meant to elicit a reaction so you can compare to others).  That’s right ONLY on histamine.  My second born is showing no allergic reaction to the top 8 food allergens.  [exhale]  

  

We are so thrilled and so pleasantly surprised.  I’m ecstatic that we won’t have to worry about Olivia touching, eating, reacting to the foods in her environment.  I can’t help but feel sad for Elena, though.  She has lost her teammate.  She had already begun talking about how she and Olivia could not eat certain things and they were just alike.  They are alike in a lot of ways, which I tried to point out to her after the appointment, but not in this way.  Ultimately, Elena decided she is glad she doesn’t have to worry about her sister’s food like she has to worry about her own, but I’m sure this is something she will struggle with.  I can’t imagine how lonely she must feel in all of this.

To add insult to injury, Olivia will be bringing her food into Elena’s safe haven.  The allergist told us that it is best to introduce all of the top 8 and give them frequently, now that we know Olivia isn’t allergic to any of them.  He said that by introducing them and then waiting months in between exposures, we would actually be increasing the chances that she would develop an allergy.  I suggested not giving them to her at all, but the idea did not seem to be in Olivia’s best interest.  I guess I knew it before I asked, but I had to ask.  Now that I know the extent to which food allergies interrupt and limit Elena’s experiences (not just with eating), I can’t impose the same restrictions on Olivia unnecessarily.  If it were just the food, that would be doable, but as you all know, it’s so much more.

I am worried that Elena will resent her sister or that people will prefer Olivia’s company to Elena’s because of the ease.  I also worry that Elena will begin to feel excluded and less safe in her own home.  I recently read a blog post where a mother described the constant battle of evening the score between her children due to experiences, treats, and privileges involving food.  It seemed like a full time job.  I know this is the lesser of two evils and I am so thankful for these results.  It’s time to learn a new dance and I’m sure my girls will help me figure it out as we go.

For now, I just want to celebrate these results.  I need to celebrate Olivia and all of the possibilities that have been opened to her today.  She will never have to struggle with being hungry and not being able to figure out if the food she has available to her will do anything more than ease her hunger.  She will never have to fear parties and celebrations because of the food that will be present.  She will be able to visit friends without having to establish a plan of action for meals and snacks ahead of time.  She will not have to know the feeling of having an Epipen pouch accompany her everytime she leaves the house or the panic that comes with forgetting it.  My Olivia can be fully engaged in life without having to sidestep social situations because of food.  She will be able to appreciate all of these things fully because she will know the alternative better than most, as she will be playing her own role in helping to keep her big sister safe.

Thank God for His many blessings!
Elena shares her thoughts on Olivia’s test results.
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Thank You Up and Down and All Over the Place

I just want to take the time to thank all of the people in our lives who have gone out of their way to participate in our battle against food allergies.  By this, I mean, those who have put themselves in our shoes and taken special consideration to reduce Elena’s risk of exposure and exclusion.  

First, what does this mean?  Exposure and exclusion are the two things we fight against the most.  Obviously, we go to extremes to ensure that Elena will not come in contact with any food containing one of her allergens each and every day. The other struggle we face daily is fighting to avoid exclusion due to Elena’s allergies.  Every time a new and unfamiliar situation arises, my first inclination is to avoid attending.  I never know what the food will be like and how I will make Elena feel included in the event if she is not able to enjoy the treats that every other child around her is having.  We have so many friends and family members who have thought about this for us in advance and made sure Elena would be included.  We are so lucky to have such caring and considerate people in our lives and I think they can serve as a great example to other people who have friends dealing with food allergies.

I’m going to avoid using names because so many people have done these things for us and I don’t want to leave anyone out.  The acts are pretty amazing and all unsolicited.  I don’t even think I would have been able to think of these kind acts myself and I am amazed at how thoughtful these people have been.

One of the most dreaded events for many kids with food allergies (or their parents anyway) is the birthday party.  With our allergies (egg, dairy, nuts) cake is always an issue.  I always plan to bring Elena her own safe cupcake, but sometimes it’s just not the same.  All of the kids are crowded around a beautifully decorated cake unlike any they have ever seen, while Elena is at a safe distance with her same old cupcake that she gets every time there is a celebration.  Sure, I try to change it up.  I do different flavors and decorations.  Sometimes I let her decorate it herself, which is great fun while we’re at home, but when faced with the magnificence of the treat being enjoyed by the other kids, hers always seems to be a bit of a disappointment simply because it’s different.

Elena has actually woken up in the night crying because she dreamed she was at a birthday party and couldn’t have a cupcake like the other kids.  It is heartbreaking to see anxiety beginning in your 3 year old.  Although I fear exposure AND exclusion, she only fears exclusion.  I have no doubt that the fear of what could happen if she is exposed to an allergen will come in time, but for now she does not have an understanding of these risks.

I always bring a safe cupcake, so what else can be done?  Our friends have answered this one for me through what I can only describe as heroic acts of kindness.  They would tell me that’s silly, it’s no big deal, but to us, it’s everything!  Here are some examples of the kindness we have encountered…

1.  Saving/ordering safe decorations to add to Elena’s safe cupcake so hers will look like all of the others

2.  Finding an allergy safe bakery and ordering a special treat that Elena did not have to bring herself.  She loves getting something she has never seen before and that she knows Mommy did not bring.

3.  Making safe cupcakes/cake.  Yes, actually making egg/dairy/nut free dessert for EVERYONE!!!  Can you say, amazing?  Elena, being the only one with a food allergy in attendance did not even know the magnitude of this act, but I sure did.

4.  Letting me know ahead of time exactly what foods/treats will be served so I can duplicate as closely as possible.  This makes such a difference because, although hers is different, it’s not SO different.

 

Here are some cakes Elena has been able to enjoy…

This is Uncle Scott’s 32nd birthday cake with princess sprinkles.

Tiffany proves you are never too old to have an allergy free birthday cake, even if you don’t have food allergies of your own.  You’re welcome for this photo, Tiff.

 

Elena’s 2nd birthday party.  All of the kids enjoyed this allergy free cake even though Elena was the only one there with food allergies.

 
 

This was Elena’s 1st birthday cake.  She had her own safe smash cake and this one was NOT safe.  Yes, there was a time when I questioned whether I had the right to serve allergy free food to other people.  I am so glad those days are over.

Birthday parties are not the only difficult situations for a family dealing with food allergies.  It is also extremely difficult to accept help from others when we need it.  For example, when our second baby was born, we had to decide whether or not we could accept meals.  Ultimately, we decided that we would accept meals, but not allow Elena to have them, which meant cooking for her even when a meal was being provided for the rest of us.  So many people offered to bring safe food, but the truth is, we didn’t feel that we could accurately convey what goes into ensuring that a meal is safe, nor could we ask people to take such precautions.  Those friends of mine, what do you think they did?

1.  One gave me a detailed list of everything she was making ahead of time, including brand names and ingredients.  She actually did this for several options and asked me to choose one.  It was incredible!!!

2.  Someone removed all labels from the ingredients she used in her dish and taped them to one big piece of paper so I would have them in front of me.  Of course, she checked first as well, but this way I could read them for myself.

3.  One person took photos of all labels with her phone and brought it to me to scroll through before letting Elena eat.  I knew every ingredient was safe.

4.  Some ordered take out from a place we trust and gave the manager the shake down to make sure they got it right.

Make no mistake, the unsafe meals were greatly appreciated and enjoyed as well.  I don’t want anyone for a minute to think they should not have brought those delicious homemade meals of allergen filled goodness that I so looked forward to and enjoyed so thoroughly.  The truth is, I like cheese.  I like creamy, delicious, allergen filled foods that my daughter cannot eat.  It was such a treat for me to have “cheats”.  I didn’t mind whipping up a quick chicken breast for Elena and waiting until after bedtime to indulge.  I appreciate each and every person who loved on us in this way.  I’m focusing on the others in this blog because it is about our struggles with food allergies.  See my belly full of goodness blog for details about these other meals 😉

Finally, we feel the love by how we are treated in our own home and at our own parties.  I tend to host parties and play dates whenever I get a chance so that I know Elena will be able to celebrate holidays and events safely.  When we have people over, all of our food is allergy free.  We do not have anything at our party that Elena cannot enjoy.  This makes for some food options that are a bit out of the ordinary for many kids.  Kids who are used to goldfish, cheesy foods, creamy veggie dips, and other “kid food” are faced with veggie/hummus platters, vegan cupcakes, and whatever other festive Pinterest party food I have modified.  Do you know how many complaints I have heard when the kiddos see the food table?  None.  I have never ever heard anything negative about our less than customary spread.  Even more amazing, the adults are open as well.  You might not think it, but adults are far more difficult to please than kids when you mess with “traditional” food options.  I have heard grown ups turn up their noses at specialty diet foods more often than I care to remember.  I have even seen family members of another allergic child refuse to eat his birthday cupcakes because they were allergy free.  I had a difficult time picking my jaw up off the floor on that one.

Here are some of our allergen free party tables…  

Elena’s 3rd birthday party: Fancy Nancy themed

 
 

Halloween Bash

 

Valentine’s Day Play Group

Thank you to all of our wonderful people for being on our side of this battle.  I cannot even begin to express what it means to us.  You have changed our lives for the better!!!

Halloween Success!!!

My last post outlined my carefully laid plans for Halloween night.  We had a pre-trick or treating party at our house, which was my way of controlling our environment without foregoing the fun and excitement of the most frightfully fun night of the year.

We had a lot of fun with the menu for our party. Everything was free of dairy, egg, peanut, and tree nut ingredients. Our goal, as always, was to create a safe worry-free environment for Elena in our home.

 
 

The cupcakes were made from a safe chocolate cake mix, a can of pureed pumpkin, and 1/2 cup water. That’s all!!! We decorated with safe candies (hint: Jelly Belly brand candy corn and jelly beans contain no egg, dairy, or nut ingredients). Rold Gold pretzel rods made excellent branches.

 

 
 

These smiley apples are made from a dab of Wow butter (soy) and candy eyes I found at Michael’s.  Soak your apples in water and lemon juice to keep them from turning brown.

The Veg-O-Lantern makes for fun presentation of raw veggies.

This skeletal veggie man was fun and easy to put together.  His head is a bowl of safe hummus, which is our go-to veggie dip.  Kids do love dipping.

The snake is filled with a mix of ground turkey (seasoned with cumin, chili powder, and oregano), rice, and salsa.  He was our main course.

With a belly full of safe food, we headed out for some trick-or-treating fun.

The excitement of trick-or-treating is all over her face.  She loved every minute and, luckily, never tried to remove any candy from her bag.

At home, we sorted her candy into a safe pile and an unsafe pile.

Then we used the unsafe pile to fill bags for the goblins.  I read the ingredients to her and when she heard one of her allergens, she put the candy in the appropriate bag.

Is it crazy that I was nervous about letting her touch the outside of the wrappers?  I did decide to let her place them in the bags herself, but I can’t say it was comfortable to watch.

I don’t even think she realizes that this isn’t what every other kid does when they get home after Trick-or-treating.  Filling bags for the goblins was as much fun as the rest of the night.

 

In the end, we had a great, fun, safe night. The goblins brought gifts in exchange for the candy and Elena never asked about missing confections. In fact, we ended up trading in most of her safe candy at Earth Fare for a free kids meal and a prize. Safe or not, who wants their kids having that kind of sugar access?

Trick or Treat, Smell my Feet, Give me Something Safe to Eat

Ahhhh, Halloween.  When I think of what Halloween meant to me as a kid, I think of two things:  costumes and candy (not necessarily in that order).  The feeling of your bucket getting heavier and heavier with perhaps the most treasured substance known to child.  I remember looking forward to getting home and dumping it all out just so I could marvel at my bounty.  There would be the piling of the candy, maybe a few bartering transactions among siblings, and finally, the bag would go to a well thought out hiding place to keep my brothers and parents from raiding my stash.

I remember warnings regarding dangerous candy.  If I remember correctly, the suggestion was that there might be crazies out there who would inject your sweet treats with toxic substances that could only be detected by the naked eye of a parent who should check all candy before you partake.  I’m sure this was a real risk for some, but in my small town where I personally knew every resident whose door I knocked on, it was a bit out there.  How could my trick or treats be contaminated with anything dangerous?  Please!

It’s interesting how quickly your perceptions can change.  Every piece of candy that goes into my daughter’s trick or treat bag this year will require examining and most will not pass inspection.  We will be removing any item with peanuts, peanut butter, almonds, any other tree nut, egg (including nougat, candy corn, many candy bar fillings), dairy (goodbye chocolate and anything creamy), not to mention coconut.  We will undoubtedly be left with a small pile of safe sugary sweets and a very large pile of offenders.  After wiping down the wrappers of the safe candy to ensure that nothing touched a partially open offender while in her trick or treat bag, we will anxiously let her choose something to try, Benedryl and Epipen in hand.  Talk about a good time!

The question is, how do I make this fun for her?  So far, it hardly sounds like the foundation for fond childhood memories of one of the most exciting days of the year.  Since this will be our first year of true greedy unadulterated candy seige on the neighborhood, I need a plan. 

What better accessory to a great Halloween plan than Goblins?  Here goes.  We will be visited by four Goblins on Halloween night.  You guessed it!  One for each allergen.  We will divide the candy into bags to be left out for each of these goblins, trying to make them as even as possible since many candies will contain multiple Goblin delicacies (i.e. allergens).  We will leave out the bags, clearly marked, for the Goblins and we will expect some kind of compensation.  I’m not sure what these Goblins will be bringing yet, but I really hope they know what they’re doing.  A child’s Halloween memories are at stake.