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Our food allergy story: The bite that sealed the deal

February 16, 2016 By Tina 61 Comments

There is an increasing number of individuals and families in the world who are learning to cope with the struggles of food allergies.   This entity is not partial to race, religion, socioeconomic status or gender.  It has no determined age of onset, it has no known definitive genetic trigger or cure.  It is simply something we, as families, are just trying to survive on a daily basis….and, along with scientists, physicians and many other advocates, are working hard to understand and rectify.


This post may contain affiliate links.  Please see my Disclosure policy for more information


~ Our Food Allergy Story ~

Since a significant portion of this blog is meant to center around our family’s journey, many of those steps already carry or will carry the food allergy imprint.  To help you, the reader, understand our situation a little better, I felt it was important to share a little background with you so we can hopefully find yet another way to connect through experience.

~ Let’s start at the beginning ~

Our story starts with our first son.  B’s delivery was rough, but his infancy was near perfect.  He was a healthy, happy, stubborn and curious little boy.  Around the age we began to introduce foods, we did notice that B was developing eczema and, when given his first turkey sandwich with mayo, he had some angioedema around his lips.

It was a friend who mentioned her thoughts about food allergies and she referred us to Allergy at the Milwaukee Children’s Hospital.  That was our first big shock as skin testing revealed he was allergic to eggs, wheat, peanut, milk and a slew of other items.  We were floored, devastated in fact.  We had no idea what to do.   At that point, we felt caught off guard and near depressed.  We were worried that there would be nothing for him to eat as we learned about disclaimers, hidden ingredients and the potential hazards of cross contamination.  What we didn’t realize was how easy we actually had it with our first son. We had no idea what lie ahead of us.

Our first son’s allergies followed a pattern to resolution.  By three, he was able to tolerate wheat and dairy, and the onslaught of other foods that were perhaps Class I or II reactions.  By four, he was able to eat peanuts and, by five, we added eggs back into his diet.  It seemed like his allergies had resolved and we were able to bring peanut butter back into the house.

Yeah, peanut butter!

Our second son was fine.  He had a few minor allergies within the first year of his life; however, the physician was so concerned over his thin appearance (though he was still very healthy, just had a very high metabolism and still does), he requested that we slowly try to reintroduce dairy….and then oat, the only two things for which he proved positive on skin testing and RAST/IgE (the most common lab studies utilized to determine the potential for allergic reactions within the blood stream).  A was going to be just fine…..and peanut butter stayed in the house.

~ Here Comes Trouble ~

Then came our third son!

His dramatic tale truly begins with conception as I constantly refer to him as the boy who started causing trouble in utero.  It was a very difficult pregnancy for both of us, riddled with blood pressure issues, the fear of a pulmonary embolism, several preterm labor episodes, gestational diabetes and, ultimately, an early birth by a semi-emergency c-section.  Fortunately, we held him in until 36.5 weeks, but he was already 8 lbs 6 oz at that point.  Thank, God, we got him out! However, right from birth, we noticed that his skin was not quite all pink and soft.   He already had eczema and he was extremely fussy.

Nursing was a complete nightmare with L.  We began to notice that he was frequently gagging, his tongue was sticking out and he was vomiting often.   His eczema flare was so bad, his skin was cracked and bleeding.  I was terrified to leave him alone in a room to sleep, afraid he would scratch himself and bleed to death. Doctors chalked it up as regular baby cradle cap and eczema, barely listening to my mommy intuition that told me something was wrong.

Based on our experience with B, I began to think about the potential of L having food allergies and tried to wean things out of my own diet to see if we could change his reaction during nursing. This was, sadly, to no avail.  He continued to struggle and I continued to grow more and more depressed.

L at 2.5 months ~ photo taken by T.M. Brown
L at 2.5 months ~ photo taken by T.M. Brown

~ The Battle For Answers Began ~

I fought hard for an Allergy referral.  However, no medical professional felt a child under the age of one should be seen by an allergist.  Instead, they sent me to four dermatologists, all with differing opinions and various methods of treatment.  One even wanted to do a skin biopsy to test for some type of cancer!  We tried Aveeno, hydrocortisone, Aquaphor, vaseline, etc.

Nothing worked!  

I eventually decided to stop nursing and use a formula we had used on our first son when he had eczema (of note, B’s eczema was nowhere near this point of worry).

As time went on, L cleared up a bit….until we began to introduce foods.  Even though he was Baby #3, we still waited until the recommended age and took the standard new food every few days approach.  We really needed to see if foods were the cause of his skin condition.  It felt impossible to determine.  Finally, our pediatrician, skeptical beyond all get out, allowed us to go see Allergy for an opinion.  Allergy would only allow us to test three foods – milk, wheat and soy.  Milk and wheat tested positive, but they considered L very dermatographic, so they didn’t rely on the results.  Instead, they had us go for RAST/IgE testing to confirm.

L's Allergist visit ~ photo taken by T.M. Brown
L’s Allergist visit ~ photo taken by T.M. Brown

To our amazement, the labs proved negative!  In fact, they were 100% negative.  Based on that, the doctors told us that L had no food allergies and, with the results of his IgE, would likely never develop them.  They were under the assumption that L’s skin was simply just highly sensitive and that we just needed to keep his skin lubricated.

Okay – well, that was somewhat of a relief, but I didn’t quite think it was accurate.  We instead continued our vigilant attempt to determine what was causing our son’s discomfort.  By this point, his skin looked like he had chemical burns and his tongue was constantly hanging out of his mouth, as if it didn’t fit inside.

~ Happy 1st Birthday, Welcome to the ER ~

Fast forward to Birthday #1!  We made it!  He was an entire year old!  We dropped his brothers off at school and took him out for his first pancake at IHOP.  THIS is where the worst part of the nightmare began (no fault of IHOP Restaurant – they did great!).  My husband had innocently asked me if we should give L a bite of the eggs on his plate.   I was nervous.  We had no Benadryl, no form of epinephrine.  I was a bit worried something would happen.  My husband then reminded me that the allergist said testing was normal and that there was no potential for him to have food allergies.  All right, he convinced me, so we did it.  We gave L a dime-sized piece of scrambled egg.  I mean, he had had no reaction to the pancake, so egg MUST be okay for him, right?  WRONG!

Within thirty seconds, he was breaking out in hives everywhere.  His eyes and lips were swelling.  His nose was running furiously.  He was rubbing his eyes vigorously.  He was obviously fussy and then it happened….he started to gag and choke!

My baby was choking!!!

Ambulance ride to hospital ~ photo taken by W.R. Brown
Ambulance ride to hospital ~ photo taken by W.R. Brown

~ Grateful for Kind Hearts ~

An IHOP employee called 911 and, fortunately, there was a nurse inside the restaurant eating her breakfast with friends.  She came over and helped us through it emotionally until the emergency medical team arrived.  To be honest, I never saw medical personnel arrive to the scene that fast before!  I turned around and they were there.

Immediately, L and I were escorted to the ambulance and my baby’s vitals were taken, while I explained what happened. His oxygen saturation had already dropped below 90% and oxygen was applied.  Okay, well, they attempted to be apply the mask.  L was not really a fan, so we kept it as close to his face as possible for blow-by.  His very first epinephrine shot was administered right then and there.

Can you imagine how hard it was for me to keep it together?  (L, meanwhile, was crying, but playing with anything he could get his tiny little hands to grasp).

~ Believe Me Now? ~

So, L’s first birthday will be remembered as the day he took his first ambulance ride to the hospital, received his first epinephrine injection and scared the living daylights out of his parents.  We spent most of his special day in the emergency department (but the docs and nurses thought he was absolutely adorable).  To sum up the story from there:  We now had a documented allergic reaction.

I called his pediatrician and said, “See?  I told you!” and we were finally sent back to Allergy, where I said the same thing to them. Testing at that point, now that he had passed the one year old marker, demonstrated severe reactions to eggs, wheat, peanut, milk, fish, oat, corn, cat and dog.   Nurses were coming into the room specifically to gaze at the size of his reaction to peanut.  Yeah – that was devastating….but ironically a relief, as well.  Mommy intuition was right…and now I had the experience and testing to prove it.

~ Where We Are At This Point ~

We are approaching the nine year anniversary of that frightful day as our youngest will be turning ten very soon.  His allergy list has dwindled in number down to eggs, peanut, tree nut and shellfish (yes, we lost a lot, and picked up two), but the intensity of his reaction remains life-threatening.  His story remains complicated by an airborne component, a contact component and several types of reactions that seem to vary by food.  He has had perhaps three or four severe reactions, but, thankfully, nothing that has hospitalized him to this point.

His educational track has certainly been complicated as the public school system has not worked for him in the past (not even with the coveted 504).  He was bullied by one teacher, criticized and ridiculed by many parents and haunted by the frustration of nurses, principals and teachers.   The decision was made to homeschool until we felt he was strong enough to be his own advocate AND we could find a school educated and compassionate enough to handle food allergies well.

After three years, we finally found a private school that takes such great care of him and has a proven record of food allergy safety!   To this point, his first year back, we have had very minor issues and a great staff that watches out for him!  (PS – the little stinker skipped a grade in the process!)

~ Just One Story of Thousands ~

Our story is one tiny little speck in the Food Allergy Community. There are thousands upon thousands of individuals, both young and old, whose stories either take a more tragic or dramatic turn or, otherwise, give us hope towards resolution and a cure.   THIS is where our hope lies – in finding a way to completely eliminate the fear and dangers of food allergies, in finding a cure….in being able to walk into a room and not worry what in the air may be causing L’s ears to swell so quickly.

At current, we are facing no etiology, no concrete theories.   In fact, L defies every theory out there right now, such as the hygiene hypothesis (he’s the third kid…really?), mom ate too much of an allergen during pregnancy (hate peanuts) or mom ate too little of an allergen during pregnancy (craved eggs morning, noon and night).   At the moment, we are simply left guessing how did this happen.  How do we keep them safe? How do we teach THEM to stay safe when we are not there to control the situation?  And ultimately…..are they going to be okay?

L @ 9 yrs ~ photo taken by T.M. Brown
L @ 9 yrs ~ photo taken by T.M. Brown

This was just the beginning of our story and L is doing very well these days.  I hope to share many food allergy successes and (fewer) lessons learned as time goes on (school, vacations, dining, etc) and I hope you find yourselves tagging along for the adventure.

UPDATES: Hey guys!!!  I will be updating this story as time goes along.

For the next chapter in our story, click here!!!

You can also read about our food allergy experiences while traveling:

  • Walt Disney World
  • St. Simons Island, Georgia
  • The World of Coca-Cola 
  • Cape Cod


BE SURE TO FOLLOW FOOTPRINTS IN PIXIE DUST ON:

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Filed Under: Food Allergies Tagged With: food allergies

Reader Interactions

Comments

  1. Rebecca Robson says

    January 23, 2017 at 3:44 PM

    Thank you for sharing your story on the food allergy journey. As a fellow allergy mama I understand your worries and stresses. I’m glad to see Logan is doing well these days.

    Reply
    • Tina says

      January 23, 2017 at 3:46 PM

      Thanks, Rebecca!! It’s nice to hear from another fellow allergy mama. We are having a good school year so far. Hope your year is off to a safe and healthy start, as well.

      Reply
  2. maplebee92 says

    January 23, 2017 at 4:14 PM

    You’ve been so brave and your sons are lucky to have such great supportive parents!

    Sophie | MapleTreeBlog

    Reply
    • Tina says

      January 23, 2017 at 4:23 PM

      That is extremely sweet and humbling of you to say. Thank you. It’s really these kids and anyone battling food allergies who should be considered truly brave. To have to be constantly vigilant and protective, always aware of their surroundings. Lord willing, we will see breakthroughs in finding a cure in the near future. Thank you so much for taking the time to read the piece!!

      Reply
  3. Michelle Beard says

    January 23, 2017 at 4:19 PM

    my first child was the eczema child and we nailed it down to a type of red food colouring. it is great to read about other allergy stories but it always frustrates me how the common thread is the frustration and stress at getting a diagnosis or confirmation. and also the frustration at the community at large about allergies.
    XXX
    great read X

    Reply
    • Tina says

      January 23, 2017 at 4:26 PM

      Thanks, Michelle! Yeah – that red food coloring can cause some terrible allergic reactions! I had to avoid it as a child myself. I’m glad you figured it out for your little one! We are years into this with our son and have come a long way personally, but there is still a lot of educating to do. Keep that chin up, Momma, and keep taking steps forward. Thanks again for the read!!!

      Reply
  4. Fi Morrison says

    January 23, 2017 at 4:48 PM

    How frightening for you, especially with Logan on his first birthday! I am so glad he is doing okay, and you’ve been able to work out his triggers and work through that. Our son has mild ezcema, and no food allergies run in the family, so hopefully we don’t have to experience this, but I know your story will support and encourage many other mums, so thank you for sharing!

    Reply
    • Tina says

      January 23, 2017 at 4:51 PM

      You are too sweet, Fi! Thanks for the read and I do hope your little one’s eczema stays just that and resolves as he grows. It’s not a fun adventure to have, but I can’t take for granted that our son has been healthy otherwise. Again, thanks for taking the time to read and, yes, I do hope this story helps/encourages someone at some point!

      Reply
  5. Natalie @ Obsessive Cooking Disorder says

    January 23, 2017 at 7:06 PM

    I’m so that’s so bad to happen at IHOP! I’m a doctor but in internal medicine (adult) so I never deal with childhood allergies, but those can be so frightening.

    Reply
    • Tina says

      January 23, 2017 at 7:12 PM

      I’m sure you have come across some adult allergy situations that were pretty scary. Thank you for working a career that aims to bring healing and wellness. That’s a challenging field! Thanks for the read, too!!

      Reply
  6. Jade says

    January 23, 2017 at 7:50 PM

    OMG, I”m glad that everything worked out and mother intuition is a God sent. The Doctors should have listened to you from the get go, but I’m very glad that your son is doing good. And Congrats! very impressive, skipping a grade. 🙂

    Jade | https://budgetsandweights.com

    Reply
  7. Barbara says

    January 23, 2017 at 11:44 PM

    Mama knows best. I’ve been dealing with gluten sensitivity in my family so I know how frustrating it is. Hearing how mean people can be makes me so angry. Thanks for sharing. Your story will encourage others who are going through similar experiences. 🙂

    Reply
    • Tina says

      January 24, 2017 at 6:17 PM

      Thanks so much, Barbara! That kind of encouragement is so needed sometimes. You certainly understand this kind of crazy struggle we face. I hope all is well for your family and that you continue to find fantastic and tasty alternatives for your gluten-free family member!

      Reply
  8. Kathryn says

    January 23, 2017 at 11:57 PM

    Incredibly gut wrenching feeling! Our food systems are hard to understand but I’ve learned more and more about the TDOS snydrom that we’re all being faced with these days due to toxicity. I’m so focused on nutrition and addressing these issues now – it’s worth looking up! I truly hope your family stays healthy!

    Reply
    • Tina says

      January 24, 2017 at 6:15 PM

      Thanks, Kathryn! I’ve done some research in the past regarding TDOS, but it doesn’t seem to pertain to our son’s situation. Nonetheless, I agree! It’s important to watch what we are putting into our systems because it does really matter. Glad your research is paying off for you!! Good luck with your healthy endeavors!

      Reply
  9. Lis says

    August 8, 2019 at 6:04 PM

    Thanks for sharing your journey with allergies. I’m sorry you and your family had to go thru such scary episodes to learn the truth. An important lesson, whether for yourself or your family, is the need to educate and advocate for yourself. No one else, not doctors or other healthcare advisories, will do it on your behalf. It takes time, money and energy and is most often inconvenient but it’s worth it in the end!

    Reply
    • Tina says

      August 8, 2019 at 6:15 PM

      I agree 110% regarding education and advocacy! When our son was going through all this during his infancy, awareness was still vague and only so deep. Pioneering was the norm and it was HARD ~ whether it was with family, friends, doctors or school!!!! Now, it is better ~ but we still have ignorance and a lack of understanding. I’m grateful to live somewhere in the country where it is not as misunderstood. Now – to educate others!

      Reply

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    January 31, 2020 at 11:51 AM

    […] son has a personal requirement when it comes to eating out of the house with his food allergies.  He has to meet the manager / chef face to face and gain the confidence to know that his food is […]

    Reply
  36. Snow Day Adventures | Making Pretzels with the Boys says:
    February 18, 2020 at 11:32 AM

    […] was a great treat for our egg, peanut and tree nut allergy son!  He loved making them and, well, eating them was even better.  We were able to save some money […]

    Reply
  37. Review of Paddlefish at Disney Springs | Will We Go Back? says:
    February 19, 2020 at 9:14 AM

    […] Celina got the preliminaries out of the way ~ asking about food allergies, dining plan, etc. ~ we placed our order.  Since we had already taken a peek at what they offered, […]

    Reply
  38. The Kennedy Space Center Visitor Complex | So Much To See, Do, Learn says:
    February 26, 2020 at 4:44 PM

    […] away from the family to find a Crew Member.  My goal was to be proactive and ask how they handled food allergy orders before we reached the front.   The first Crew Member I found was wonderful, sweet and […]

    Reply
  39. Our Food Allergy Friendly Experiences at Walt Disney World says:
    March 4, 2020 at 8:22 AM

    […] food allergies to eggs, peanuts and tree nuts.  (You can read our fun and interesting story here)  As an infant, his list was actually much longer and included eggs, wheat, peanut, milk, fish, […]

    Reply
  40. Our Journey to Star Wars: Galaxy's Edge | Footprints in Pixie Dust says:
    March 23, 2020 at 12:39 PM

    […] this trip, we did not take our son with us.  As you may recall, he has severe, life-threatening food allergies to eggs, peanuts and tree nuts.  However, I have several friends who have already traveled to […]

    Reply
  41. Finding Ways to "Enjoy Life" with Food Allergies | Footprints in Pixie Dust says:
    March 23, 2020 at 2:19 PM

    […] to some of the most common foods would leave one’s diet fairly restricted.  Right?  Well, when our son was younger, it was.  It was quite the task to find things that were safe and healthy and would put meat on his […]

    Reply
  42. Disney's The Lion King on Broadway Review | The Curious Footprint says:
    November 24, 2020 at 8:44 AM

    […] you have had success in bringing someone with food allergies to a Broadway production, please tell me how!!!  I’d love to hear from you!  Feel free to email […]

    Reply
  43. The Story Behind The Christmas Ornaments | Day Four, Disney Memories says:
    December 8, 2020 at 4:50 PM

    […] boys at the time were 7, 4 and 18 months.  By this point, our youngest had already been diagnosed with food allergies and experienced two or three episodes of anaphylaxis.  Learning about his specific and personal […]

    Reply
  44. Our Family's Favorite Peppermint Fudge Recipe | The Curious Footprint says:
    December 16, 2020 at 4:01 PM

    […] so this one may be a difficult one for those with dairy allergies.  However, for those who have egg, peanut or tree nut allergies (our youngest son has life-threatening allergies to these foods), we used Nestlé chips, […]

    Reply

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