Allergy Free Info helps people with allergies and food sensitivities navigate a path to healthy living.
Navigating Allergies and Food Sensitivities

Sam’s Story

And you thought an allergy meant sneezing…

Birth – 1’st year – What’s wrong?

My husband and I, young Americans working in Japan, were elated when our first child, Sam, was born during August 1993 in Tokyo, Japan. A healthy 8.5 lb. baby that the Japanese hospital staff quickly noted had an “oki atama des neh?,” or, in English, “ a big head, eh?” When we looked at our American baby in the nursery with his fellow Japanese newborns, we would joke how the other Japanese parents must be worried about the potential of the foreign baby eating the others.

I chose to breastfeed due to the documented benefits of mother’s milk reducing infections, protecting from illnesses, reducing the potential of developing allergies and enhancing development and intelligence, (see Breast Feeding). Despite a published study indicating that breastfeeding was associated with a lower incidence of Respiratory Syncytial Virus (RSV) Infection, Sam developed this tough cold-like virus within the first week of his birth. This was an omen of things to come.

Despite the eventual rebound from RSV, Sam continued to have health problems. After each feeding he would either have horrible projectile vomiting episodes and/or obvious gas pain accompanied by strong stomach gurgles and diarrhea. It became the norm that I had to change Sam’s and my clothing at least 4 times a day. Friends and family would just discount it as “normal,” or colic, which according to all of the baby books would not last more than the first three months. It did. The Japanese physicians would snicker and tell me I wasn’t burping my son correctly. Sam wouldn’t nap unless he was held and comforted, and wouldn’t sleep through the night until he was two years old. Yes, I tried the Ferber Method, as “everybody” suggested at that time, with no results other than my later guilt that I ignored Sam’s justified crying.

I was so envious listening to other mom’s conversations about their babies, how they were thriving, no vomiting, taking multiple naps during the days and sleeping through the nights. They actually had time to read their baby books and make dinner. What was I doing wrong? I was often covered in vomit, never had nap downtime, or even the ability to sleep through the night.

One morning at 3:00 a.m., when rocking my little Sam back to sleep, I was re-reading my now large library of baby books which kept associating many of Sam’s symptoms with food allergies – the most common being wheat, egg, peanuts, dairy, and soy. Although Sam was not consuming any of these foods, I began to wonder if I was passing these allergens to him through breast feeding. Resolved to do more research on this potential, that same week I performed my own unintentional, lab experiment. When Sam woke crying from one of his infrequent naps, I put down my peanut butter and jelly sandwich, washed my hands, took him out of his crib and placed him on the diaper table. He was not wearing a shirt, and while holding him steady with one hand on his chest, I reached for some baby wipes. When I lifted my hand from his little chest there was a raised, red tattoo of welts in the perfect shape of my hand. And this was after I had washed my hands and touched him for seconds!

I immediately removed from my diet wheat, egg, peanuts, dairy, and soy (and jelly, just in case), and continued breastfeeding. I was shocked; for the first time in five months, Sam didn’t vomit after feeding, and I actually was able to put him down for a nap! As soon as possible I booked a flight to the USA to visit an allergist for a skin prick test during which concentrated solutions of potential allergens, such as peanuts, wheat, eggs, and dairy are placed upon small scratches on the skin. Sam’s test results indicated he was positive to all of these foods, and his reaction was so severe the doctor insisted taking pictures of the resulting welts for his next allergist conference presentation.

First Year and on – How do we deal with it?

Knowing the cause of Sam’s distress was a great relief, but the efforts to care for him and keep him safe were equally difficult. Despite great efforts to keep him away from allergens, there was always the periodic accidental exposure to different allergens (e.g., improperly labeled foods, cross-contamination of food preparation tools, someone else’s touch) that would result in severe hives, swelling of his little face, hands, throat, and difficulty breathing. It was clear that a life-threatening reaction (also know as an anaphylactic reaction) to peanuts was a strong possibility, and we therefore had to always have an epinephrine pen nearby. An epinephrine (or Epi) pen provides a shot of adrenaline that acts quickly to improve breathing, stimulate the heart, raise a dropping blood pressure, reverse hives, and reduce swelling of the face, lips, and throat.

While prepared for the known allergens, new allergic reactions for Sam seemed to surface at the most inopportune times. A vacation to a small Micronesian island in the Pacific seemed so calming until mold in our hut caused Sam to have difficulty breathing. After several shots of epinephrine, and reading the tour guide book that stated the only reason to go to the island’s hospital was to die, we realized we had to move fast. The best option was to book a small propeller plane flight to a nearby U.S. Naval base for epinephrine injections, Benadryl, and aerosol medical (nebulizer) treatments. My husband and I used our well-practiced routine of one of us walking right past an ER check-in with Sam in our arms, while the other explained the urgency.

Unfortunately, as the books and allergists indicated, having food allergies not only increases the chances of developing other allergies, it also increases the chances of developing asthma. Sam was not able to avoid this, and we purchased our first nebulizer, when he was diagnosed with asthma at the age of 2 years. A nebulizer is a device used to administer medication in the form of a mist inhaled into the lungs. Asthma attacks become a given during seasonal changes and during any illnesses, and resulted in the need of often having to set the alarm clock for every 4 hours in order to deliver the nebulized medicine that kept him out of the hospital and alive. The final insult of developing asthma was that research indicated the chances of a child outgrowing a peanut allergy are dramatically reduced if the child also has asthma. So far, this has proven true for Sam.

Although sinus and ear infections are a common phenomenon for many children, these infections were often a trigger for Sam’s asthma. To make matters more challenging, when Sam was about four we found that each infection was worse than the prior, and we began to notice hives and other allergen symptoms simultaneously. It took multiple doctors before one realized that Sam had developed an allergy to penicillin (and all of the other commonly used antibiotics that end in “cillin”).

Sam finally outgrew his allergies to egg, wheat, and dairy by the age of 6, but continued to carry the burden of a potentially deadly reaction to peanuts, a high susceptibility to infections and the flu, and periodic asthma attacks that further reduced his immune system. We saw many specialists “the best of the best” including allergists, immunologists, pulmonologists, gastroenterologists, otolaryngologists, neurologists, from the East Coast to the West Coast, who reassured us that we were managing Sam’s allergies, infections and asthma as best as we could.

Throughout his school life, we were called in each year to explain and justify why he would typically miss over 30% of his school days. In some cases, the three-ring binder of doctors’ letters and documented illnesses would satisfy their questions, but typically school officials in one form or another would imply or state we were “coddling” Sam or not pushing him hard enough to get to school. Based on our experience, if we sent Sam back to school prematurely, aside from the pain he was in, it increased the chances his sickness would become more serious and he would end up in the hospital. Credit to Sam, he did not want to stay home, and to our own amazement would make up weeks of missed work in days and keep his grade averages B or greater. This made handling the accusations that we were allowing him to skip school easier to handle; “We will make sure Sam is in school when he is healthy enough. If you feel he is missing too many days, feel free to hold him back for the year.” We quickly learned they would reply with “he is doing far too well to keep back” and that most of the focus on missed days was based on the schools fear of losing funding based on absences. Luckily, Sam had several strong teachers and school nurses who knew Sam and his situation well enough to reassure us; “pay no attention; do what is right for Sam.”

Sam never used his health challenges as an excuse and refused to let his school work, tennis and lacrosse games, and guitar lessons be unnecessarily impacted. He was very mature in the handling of his allergies by diligently avoiding the required foods despite the peer attention this brought. We soon came to trust his judgment as to whether his asthma could withstand a tough sporting event or whether he should sit out. In addition, he began to become health aware as a young teenager, ensuring he ate well, got enough rest and exercised regularly.

When we identified another family member who had celiac disease or gluten intolerance, Sam readily agreed to try a gluten free diet. We immediately noticed that Sam’s illnesses, infections, and asthma attacks were all reduced substantially. It seems that his immune system had become stronger as a result of his diet, to the point where he can now usually get through his asthma exacerbations without the use of prednisone (a steroid-based, anti-inflammatory drug). This hypothesis seemed to be confirmed, when he cheated and decided to have gluten-laden foods. He quickly caught another virus, his asthma flared severely, and despite resorting to nebulizing treatments every 3 – 4 hours, along with prednisone treatments, for close to a week, we were unable to stop his asthmatic attack. It required a trip to the hospital emergency room for three intense back-to-back nebulizer treatments and an extra week of prednisone.

With the benefits of his allergen avoidance, consistent exercise and a gluten free diet, including gluten-free toothpaste which eliminated his morning stomach aches, Sam seems to have fewer colds and infections and less need for nebulizing and oral steroids. Not cured, but much more manageable. Hopefully he will remain gluten free and we will see improved health this year, more attendance at school, less need for steroids, an ability to exercise, increase in ability to focus, etc.; healthier!

Sam just turned 18, has enrolled as a freshman in college, and is living in a dorm room on his own. Sam has already met with the college chef and kitchen personnel to ensure he can avoid foods with allergens and gluten, visited the local pharmacy to fill his necessary prescriptions, and introduced himself to the clinical staff at the college infirmary. Sam is happy, active and is the first to tell you that having an allergy is nothing to sneeze at.

An Overview of Sam’s Health History:
Age of
Symptoms
Development
Symptoms Age Of
Diagnosis
Diagnosis
Week 1 RSV usually causes the same symptoms as a bad cold, such as:

  • A cough.
  • A stuffy or runny nose.
  • A mild sore throat.
  • An earache.
  • A fever.



Babies with RSV may also:

  • Have no energy.
  • Act fussy or cranky.
  • Be less hungry than usual.
Week 1 Respiratory Syncytial Virus (RSV) Infection
Birth to
1 year
Projectile Vomit daily/very gassy stomach discomfort.

Excessive crying

Poor sleep patterns

All improved by mother

Removing allergens from her own diet

breast fed baby through 6 months
1 year old Allergies – Tested positive for peanuts, wheat, eggs, dairy
1 – 18
Years
Ongoing
Severe hives, swelling of face, hands, throat, and respiratory distress. 1 year old
to 18 Years
ongoing tests
Allergies – peanuts, nuts, legumes, mustard, penicillin
1 year to
18 Years
Wheezing, Barking Cough, difficulty breathing, “rosy cheeks” 2 years old asthma
2 years to
18 years
Miss 1/3 of each school year due to viruses, respiratory and sinus infections, and asthma episodes 2 years to
18 years
Sinus Infections / Border – line Immune Deficiency
6 years to
18 years
Heart burn 6 years to
18 years
Acid reflux
17 years We removed all gluten from his diet and his symptoms of reflux and stomach cramping improved tremendously. Asthma episodes are far less frequent and less severe. When he does have asthma episodes, it usually can be treated without the use of oral steroids. “This was never an option in the past” 17 years Gluten Sensitivity


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