Now We Carry An EpiPen

I really didn’t think my oldest son was allergic to anything. Β In two months, he will be 4 years old, so it’s been awhile since I worried about introducing new foods to him.

A couple years ago, I had asked our doctor about allergies because sometimes he gets hives around his mouth {usually when saucy food runs down his chin.} Β Our pediatrician said that many children get this type of reaction to highly acidic foods.

This past summer he broke out while eating canned chicken noodle and vegetable soup. Β We washed his face and the hives went away.

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Recently, he had the same soup. Β And I didn’t even think about the last reaction until I heard my husband suddenly say, β€œAre you OK?”

I quickly looked over and my little boy’s face was red and covered with hives.Β And then he started coughing- a VERYΒ hoarse cough, like I’veΒ never heard before.

{Insert panicked mom here!} Β Could he breath? Should we call 911?

My reaction probably scared the C-R-A-P out of him.

My husband, who was much calmer than I was, had our son drink water and washed his face. Β This all happened rather quickly and in just a short time, he was back to normal.

But in my mind, I was picturing his throat closing up with red bumps…just like the ones all over his face. Β I was extremely worried. Β I took a picture of the label on the soup can, just in case his doctor wanted to see it.

Our pediatrician referred us to an allergist. A blood test was done to see if he was allergic to any of the food protein ingredients that were in the soup.

The results: He is allergic to soy and peas.

I was told to get Benadryl to treat hives and an EpiPen prescription for the rare case of a severe reaction. Β Now we wait and do another blood test in a year. Apparently, kids can outgrow allergies.

No peas, No Problem! Β Who really likes peas anyways?

Then I went through my cupboards searching for soy. Β It seems like soy {in some form} is in EVERYTHING.

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That night, I hardly slept. Β I stayed up reading website after website about soy allergies. Β Β I found out that there are many different words to look for on labels which mean soy. Β Soy is one of The Big-8 food allergens, so the Food Allergen Labeling and Consumer Protection Act (FALCPA) requires soy to be listed as an ingredient on food labels {as well as the 7 other major allergens.}

I was confused and overwhelmed. Β I called the allergist back for clarification about the soy allergy because many of the foods in my cupboard are labeled with soy oil or soy lecithin. Β On some labels these are listed in bold as an allergen and sometimes they are not.

The advice from the allergist… β€œIf it says soy, don’t give it to him.”

That sounds like simple and direct orders. Β So why did it feel so confusing?

Because the paperwork from the Allergist states:

KEEP THE FOLLOWING IN MIND: Β The FDA exempts highly refined soy bean oil from being labeled as an allergen. Β Studies show most allergic individuals can safely eat soy oil that has been highly refined (not cold pressed, expeller pressed, or extruded soy bean oil). Most individuals allergic to soy can safely eat soy lecithin. Follow your doctor’s advice regarding ingredients.

Hmmm…was my son β€œmost individuals?” Β The doctor’s advice was β€œno soy.” Β See my confusion?

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I took both boys to Target to pick up the EpiPen. Β WORST. Target. Trip. EVER. {Keep in mind…my husband was gone that week for work and I didn’t sleep much since I was up worrying and searching the internet.}

Here’s how it went: Waited in a long line at the pharmacy to hear β€œIt’s not ready.” Browsed through the groceries reading labels. Β My son asked, β€œCan we get this?” a million times. Β And me, β€œNo it has soy in it.”

Waited in line forever at the pharmacy again. Then they asked for our insurance card. Β And had to call the insurance company. Β Since we have a high deductible, they told me it was going to cost a small fortune for the medication. Β Waited again for the pharmacist to print me a coupon to save some money. {Thank you pharmacist!}

A huge line formed behind us. Β My 3 year old got very squirrely. I resorted to holding a flailing 41-pounder on my hip. Β Then the baby started crying, all while the pharmacist tried to explain how to inject my son with an EpiPen in the event of a severe allergic reaction.

It was the kind words of a stranger {probably a mom herself}, β€œCan I help you?” that put me over the edge.

β€œNo,” is all I got out before my eyes filled with tears.

The pharmacist handed me tissues andΒ I couldn’t get out of there fast enough…but we had some groceries in the cart. Β The college-age guy at the check-out must have thought I was a crazy person! Β But I’m really just a mom…tired and worried sick about a little boy.

If you are an allergy mom, you know how overwhelming the diagnosis is at first. Β If you become an allergy mom in the future, please know that you are not alone and reach out for support.

I asked Facebook friends if anyone else was dealing with a soy allergy. Β I received several responses and it was such a relief to know of others who I can go to with questions. Β Cooking from scratch was the biggest thing I took away from theirΒ messages.

A friend, who is also an allergy mom, invited me to join a Facebook group: Eastern Iowa Severe Food Allergies. Β Just search for it on Facebook and you can join too, if you need support and information in dealing with severe food allergies.

A couple of helpful websites this group led me to are www.kidswithfoodallergies.org and www.foodallergy.org.

In the past couple months, it has gotten easier. Β Reading labels is A MUST now. And we send special soy-free snacks to preschool. Β I will do what ever it takes to protect my little guy and I don’t EVER want to have to use that EpiPen.

Moms: Do you have any childrenΒ with allergies, if so, what are they allergic to? Do you have any advise or tips for parents who have newly diagnosed kids?Β 

 

Shari
Shari is a stay-at-home mom who lives in Cedar Rapids with her husband Mark, 2 boys and a pug named Yoda. Her toddler and preschool age boys keep her very busy. She loves warm Iowa days for playing outside with her family. In her "spare time" Shari enjoys quiet activities like crafting, browsing Pinterest, learning photography, creating family photo books and watching favorite shows with her husband. She also loves Iowa City Moms Blog and her MOPS group for the connections with other mommies!

9 COMMENTS

  1. My son is allergic to Soy, Peanuts, Wheat, Corn, Sesame and Egg. I’m happy to chat anytime about allergies, reading labels, etc.

    • Thank you for sharing Valerie! I love how willing to discuss & helpful all the allergy moms I’ve come across are, as we learn all about this!

  2. Great article, Shari! You really captured the essence of the initial diagnosis and how it is completely life changing.. both physically (in how we shop, how we cook, etc), but also emotionally. I have three boys, 11 and 5 year old twins. One of the twins is allergic to eggs. We discovered it on his first birthday when we gave him scrambled eggs for the first time.

    You correctly point out that the top allergens are required by law to be either bolded or listed in a separate allergen statement. You also quickly found out that you absolutely CANNOT trust the allergen statement!! I cannot tell you how many products I have come across that do not list egg in the allergen statement, nor bold it in the ingredient list, but if you read the actual ingredients, the product does in fact contain egg. I don’t know how companies get away with this!

    I have had to use an Epi pen because of this very issue. A piece of candy did not list egg as an allergen, so my husband gave it to our son who proceeded to have an anaphylactic response. My husband’s bad, of course, for not reading the actual list of ingredients, but hey, we were new to this and who really thought egg whites would be a major ingredient in Bit O’Honey candy??

    Anyway, best of luck to you!! You are NOT alone!! πŸ™‚ Feel free to contact me anytime.
    Lori

  3. Thank you Lori for sharing your story! That must have been scary on your little one’s birthday to discover the egg allergy. Thank goodness we are not alone!!

  4. Thanks for your article – it really captures what it’s like to have a little one with food allergies. I have a 5 year old who has a peanut allergy and have lost lots of sleep worrying about how to keep him safe. It’s terrifying and overwhelming at times! I wasn’t aware of the Eastern Iowa FB page – thanks for that info! I also love the FARE website you mentioned (foodallergy.org) – so many wonderful resources on that site. There is an other FB page that I recently joined: Food Allergy Treatment Talk. It’s a “forum for openly discussing any and all legitimate treatments for food allergies, whether they are presently available, in the trial phase or on the horizon.” My son had a severe milk allergy since he was 5 months old and went through a desensitization program in Des Moines when he was 3. He is currently in the same program for his peanut allergy. I am always happy to discuss our experiences with food allergies with anyone interested. I remember feeling so alone when our son was first diagnosed – it’s great to know there are others out there who understand. πŸ™‚

  5. Thank you Jerra for sharing about your son’s allergies and for the tip about the Food Allergy Treatment Talk page! It is so good to have other moms to share and learn about all this allergy stuff. Thank you for your supportive words!

  6. We had egg allergies (outgrown!) and we currebtly have peanut and cashew allergies in our house. The allergy discovery is what prompted me to make most things from scratch…a little more time, but A LOT less worry!

    • Kate-thanks for sharing! I’ve never been a great a great cook, so this allergy diagnosis is giving me more practice. It is hardest when we go to other people’s houses!

  7. Our son recently got an epi pen and allergy diagnosis, for a similar reaction, face full of hives w/redness and swelling, coughing, etc. but for an allergy to cats and dogs!! He also gets an asthmatic reaction if around them too long. Does anyone know of any groups for kids with severe pet allergies? I’d love to discuss with someone else how they manage to avoid exposure to people’s beloved pets when they seem to be everywhere!

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