Owen’s Story

Owen was born in September 2006. The problems began the first night after leaving the hospital. Severe acid reflux (GERD) needing strong medication was finally diagnosed by 4 weeks of age, but his first few weeks were a blur of no sleep (for any of us!). Owen chirped or gurgled whenever he wasn’t propped up or held, and he projectile vomitted every feeding. He also screamed inconsolably after each feeding, arching his back, struggling to get away from us. By 9 weeks, a Pediatric Gastroenterologist was needed to devise a plan so Owen could sleep, gain weight, and not be in constant pain. Prilosec was prescribed, with further thickening of Owen’s formula. Both allowed Owen to thrive. All three of us finally got some rest. Owen soon slept through the night, began smiling more, & consistently ate peacefully.

This was the tip of the iceberg. At 6 months, Owen began eating baby food, resulting in constipation, diarrhea, or projectile vomiting. We made the decision to stick with Stage 2 baby foods until 8 months, when we introduced Cheerios and Sweet Potato puffs. The GI said everything we observed was a Reflux flare. However, the appearance of strange rashes begged for further investigation and couldn’t be written off as reflux-related. Luckily, within days of eating the Cheerios, whitish bumps developed all over his arms & legs. At this point, I called our pediatrician to inquire about food allergy testing, as I knew other parents had experienced similar issues with their food-allegic children.

Our pediatrician wasn’t helpful at all. In fact, he was completely immune to our growing concern and suggested the rashes were the result of a cat allergy. Fortunately, we had noticed other seasonal allergy symptoms, but again our Dr. blamed the cat dander. His solution was to get rid of the cats and forget about food allergies all together. We were told we were grasping at straws. I pushed back, and the Dr. finally agreed to a RAST blood panel for food allergies. The blood test came back negative for all Top 8 food allergens. The Dr. reiterated a need to get rid of the cats and forget about food allergies, as Owen apparently just had sensitive skin or eczema to go along with a “sensitive stomach.” Another 2-3 weeks passed. We DID get rid of our cats (just in case!), but we also started documenting patterns in Owen’s food reactions because things had continued to worsen with every new food introduced.

First, being cat-free made absolutely no difference. It so happened the seasonal allergy symptoms coincided with high ragweed and mold counts. This was only apparenet after we started documenting everything…and In do mean EVERYTHING. Secondly, carrots caused vomiting and diarrhea with no exception. Oatmeal was observed to always caused an angry, bumpy rash on Owen’s bottom. During this time, the whitish bumps had slowly spread across Owen’s legs throughout the summer. However, within a few weeks of the RAST blood test coming back negative, thee bumps started spreading everywhere—arms, legs, shoulders, knees, & stomach. By 10 months of age, the bumps were red, highly inflamed, showing no indication of going away. We were even forced to consult a dermatologist to get it under control, as our pediatrician (again!!) said it was just sensitive skin.

Sadly, in the midst of these observations, Owen ate his first table-food meal of breaded chicken breast. I’ll never forget it, as this was the tipping point in our struggle with Owen’s food allergies. Within an hour of ingesting the chicken, we witnessed an immediate food reaction of diarhea which blistered Owen’s skin within seconds. After cleaning him up, we noticed his entire bottom looked like one large hive. We analyzed what was different regarding THIS food/meal and realized the breading was made from cornflake crumbs. Knowing this was the first time Owen had eaten a pure corn product (corn meal or corn flour), we concluded he MUST be allergic to corn. There was no doubt in our mind. A quick look in my pantry and refrigerator verified Owen was ingesting corn of some variety at nearly every meal.

Things moved quickly after this conclusion. We bypassed our close-minded pediatrician and pursued skin testing with a Pediatric Allergist. The initial visit gave us a few false positive foods along with a false negative (carrots!). By 13 months, we had Owen’s food allergies mostly narrowed down to 4 foods—notice I didn’t say we had them under control. His final list of food allergies was cow’s milk, carrots, oats, and corn. We had suspected the last 3, but cow’s milk surprised us. Over time, we verified cow’s milk was his main Acid Reflux trigger, though possibly not a true food allergy. Corn and carrots were noted as acid reflux triggers. Oats caused only skin rashes, whereas corn overwhelmingly was identified as the worst offender of the 4. It was responsible for the severe rashes on his whole body and affected his entire GI system. We quickly discovered too how corn would be the hardest to eliminate. Though we wouldn’t know it for another 18 months, Owen’s other symptoms included stomach pain, joint pain, and constant itching. It wasn’t until he could talk that we learned he had dealt with constant itching, stomach aches, and constant hurting all over….and he was actually thanking us for making these things go away. You can imagine my shock and sadness when he told me these things!

There is one glaring observation I’ve noticed in my research on kids with allergies and/or asthma—food allergies are often the tip of the iceberg. Our life was no different. Over the next 4 years, we dealt with many medical concerns regarding Owen’s immune system and stomach….and we can’t forget how allergies of any kind are immunologic issues. That takes me to the inhalant allergy part of Owen’s childhood. Once we got the food allergies figured out, we moved on to dealing with the severe seasonal/inhalant allergies (pet, pollen, weeds, mold, etc)… It turned out cats were never a problem; dogs were the pet to avoid. After further discussion with a second Pediatric Allergist (as the first wasn’t much help), we learned Owen was one of the worst cases of infant seasonal allergies this new Dr had seen in 15+ years of practice. Even in previous years as a pediatrician, Owen was one of the most severe cases our Allegist had seen. By age 4, Owen began allergy immunotherapy to control the seasonal/inhalant allergies and resulting chronic sinus infections. We would have begun sooner if it had been allowed. Adenoid surgery followed, with little improvement. Thankfully, by age 5, allergy immunotherapy was finally giving Owen some relief. It was a cure, but it minimized the number of sinus infections.

Forgive me while I take a jump back to owen at age 2. Bloodwork taken at this time concluded Owen was born with THI (Transient Hypogammaglobulinemia of Infancy). In simple terms, his IgG levels were much lower than normal. As a result, he didn’t make antibodies to some vaccines and had trouble fighting infection, whether viral or bacterial. This quickly gave us explanations why Owen suffered from chronic sinus infections, ear infections, and severe viral infections. The acid reflux mystery continued, along with other stomach problems, but thankfully Owen outgrew THI by four and a half. Apparently THI was exacerbating the chronic sinus-infection problem, and the severe inhalant allergies were the major contributor. We were just glad to eliminate at least ONE of Owen’s medical issues!!!

Life was never dull in the midst of all the doctor’s appointments, and we had a few scares that I’m certain stole a few years from my life. Our scariest moment was when Owen suffered an acute GI hemorrage from 2 doses of ibuprofen (spread 3 days apart). He was two at the time. Later on, our Pediatric GI explained the rarity of this occurrence. The hemorrage happened during a 6-week reduction in Owen’s Prilosec medication. He had received ibuprofen numerous times in infancy and the toddler years for teething or illness/fever, but never with any adverse effects. It was odd that 2 doses would cause a problem NOW—However, he had always been taking Prilosec concurrently with the ibuprofen. Thus, the GI concluded a daily regimen of Prilosec was probably all that stood in the way of Owen having experienced a severe bleed much earlier in life. Regardless, we were lucky he didn’t bleed out before receiving emergency medical care. We were told he’s not allergic to ibuprofen, but he still must avoid any & all NSAIDS for the rest of his life, unless we want a repeat occurrence. This is one reason awe always err on the side of caution with Owen’s health, as experience taught us an extra 30 minutes can be the line between life or death. Owen’s health is never, ever simple. What’s hard to maccept in hindsight is all of this was occurring simultaneously with our quest to discover why Owen was still refluxing, and how were we ever going to get him completly cornfree!? Some days I wonder how I didn’t lose my mind. The only certainty was 1) Owen’s stomach is just plain O.D.D., and 2) His immune system is VERY complicated (thus the food & inhalant allergies, in addition to the ibuprofen weirdness and milk intolerance.)

I wish I could say there were no more surprises, but I’d be lying. At 3.5 years old, two things changed overnight. First, Owen suddenly became contact-allergic to corn. We don’t know why his corn allergy changed, but it DID, though not in the direction we hoped for. We were forced to accept Owen will likely always be allergic to corn. He will need to learn to shop and cook for himself. He may not be able to leave home for his first 1-2 years of college.

The second change involved Owen’s upper airway. At approximately the same time the contact reactions to corn began, Owen started having chronic “Croup” episodes. Over the next 2 years, we slowly sorted out the triggers and best medical solutions, with a final diagnosis of either 1) Reactive Airway Disease, or 2) Allergic Asthma. Regardless of which diagnosis turns out to be correct (and yes, the jury is STILL out….), the treatment is the same—-asthma medications and avoidance of suspicious triggers.

As for the corn-free lifestyle, by 5 years old we had Owen’s diet figured out—mostly! I had become adept at reading labels and searching for “hidden” corn. I had discovered online resources such as Delphi’s Avoiding Corn forum, my ‘Saving Grace’ for getting product information, recipes, other reaction experiences, plus emotional support. I had also (slowly!) tackled the issue of how much corn to remove from Owen’s life. Even with ever-rising grocery bills and loads of online shopping necessary to find certain products, I knew there was still more “hidden” corn to remove. Eventually, I found our version of “normal” and we settled into Owen’s corn-free life. Just recently we began compounding as many of his medications as possible, providing relief for years of endless itching and joint pain. This last step was the most difficult for me because of the cost. In hindsight, I think spreading such major changes over 2-3 years helped ease the financial burden and the panic involved in trying to live in a world where corn is everywhere and in everything. One can’t go corn=free overnight, even if you wanted to. It’s too pervasive in America, lurking behind every packing material, pharmaceutical, natural flavor, or organic ingredient.

This brings me to the time of this post—October, 2012. Owen has recently started Kindergarten, and our food allergy challenges changed significantly. Instead of dealing with as many physical emergencies, we now deal with emotional concerns like birthday parties, being left out of treats at school, or Owen’s curiosity as to why God made him this way. I handle each with as much love, nurturing, and honesty as possible, but sometimes I crack under the emotional despair of not being able to fix it!!! We stick to a strict list of safe foods, trying new foods/recipes only on weekends when we know it won’t affect Owen’s school performance. It’s a never-ending battle though, which is why I’m compelled to share our story. Everyone has to approach the corn-free life on his own terms, in his own time, and with his own financial limitations. There is no right way or easy way, but our story is here to provide hope it CAN be done. Maybe not overnight, or tomorrow, or even next week….but it CAN happen, and my family is proof of it!