Becoming an Allergy Mom!
Guest Post By Victoria Warren
I am an allergy mom. I am a proud allergy mom. I'm the kind of allergy mom who can spot a crumb from across the room or swipe my son's mouth clean faster than you can say "allergic reaction." but I wasn't always an allergy mom. I didn't plan on becoming an allergy mom, and to be completely honest with you I used to secretly roll my eyes at other allergy moms I knew.
It all started in 2012. That's when my second son chase was born. Labor and delivery was incredibly fast and easy. I remember the wonder of holding him in my arms, feeling energized and excited. My husband and I, veteran parents of a 3-year old, were eager to have a second chance at the baby thing and put all our hard-earned knowledge to good use.
I chose to breastfeed, longing for the "natural" bond that did not come naturally with my first son. Chase was a champ, eager to eat and good at it. But from day one, things were different.
Chase stopped having bowel movements. The doctor's office tried to convince me that was normal and like so many parents I blindly accepted their advice. Chase also would not gain weight. I did battle back and forth with the doctors who pushed formula on us. When chase was 8 days old and still not gaining, I gave in, agreeing to 1 ounce of formula a day to jump start weight gain. It worked and 5 days later I was throwing the formula away. The next day our lives changed.
Chase started screaming, Really screaming. Inconsolable screaming, no matter what I did. I swaddled. I bounced. I put him in the swing, stroller, and car. I sang to him, I fed him, I changed him. He would not stop. This went on for 6 hours straight, and then he passed out. The next day the exact same thing happened. By the third day, I put him in the car, drove to the mall, and decided he needed a change of scenery.
I was nursing him in a department store's mother's room and he had a huge bowel movement, the first he'd had on his own since birth (we were using the 'thermometer' trick every few days to get him to go). He messed his clothes so after feeding I laid him down to change him. That's when he started spitting up blood, big red globs of blood. I didn't know what to do.
I brought him to the doctor's office and he was diagnosed with severe acid reflux and I was told the blood was likely from small tears in his 2 week old esophagus. He was put on acid reflux medicine and I was sent home. One week later, the same thing happened.
This time we were sent for tests. They did an ultrasound for birth defects and found none. I had our first appointment with a pediatric gastroenterologist. The first thing she told me was that he likely had a milk and soy allergy and to cut these things out of my diet. I had no idea a child could be allergic through breast milk.
Chase stopped gaining weight, continued vomiting on a daily basis and had varying fits of screaming. At 13 weeks old, he was diagnosed failure to thrive, words no parent should ever have to hear. We switched him to a hypoallergenic formula. Overnight he seemed to improve, then 2 weeks later all of his symptoms returned and he started having excessive bloody diarrhea. We went back to the gastroenterologist. He was diagnosed as allergic to corn, the only ingredient in the hypoallergenic formula not broken down to elemental form. We switched formulas and again my baby was happy.
The real fun and my real transformation to an allergy mom started when we started solid foods. Chase couldn't eat anything we tried. He vomited violently from rice. Rice! Who on earth is allergic to rice? Our gastroenterologist was stumped, saying she had never seen a case like this. We switched doctors and started seeing a gastroenterologist and allergist together.
Now, I want to break from our story and explain something. Chase is not *allergic* in the typical sense. He does not need an Epi-pen. He doesn't get hives and his throat is in no danger of swelling shut. In fact, all his allergy tests are negative. So what on earth, is wrong with him?!?
He has non-IgE mediated allergies. Without getting too technical, most foods make him sick to his stomach. They cause painful acid reflux, violent vomiting, bloody, mucous diarrhea. A few foods make him so violently ill that he passes out from all the vomiting.
Doctors diagnosed him with mfpi, Fpies and eoe suspected. If that sounds like Greek to you, then you know how I felt. Mfpi is multiple food protein intolerance, meaning the protein in food can't be digested and it makes him sick. Fpies is like the evil stepmother of mfpi. It stands for food protein induced enterocolitis syndrome. Those are the reactions that are so violent he can go into shock from the profuse vomiting. And as for eoe, that stands for eosinophilic esophagitis.
To be honest with you, I don't know much about it because eoe is only suspected in our case. You need a scope to confirm it and we do a good job controlling his symptoms by limiting his diet so we still haven't scoped. The doctor's described eoe to me as a type of allergy caused by food that attacks your esophagus. Think of a terrible eczema rash, now imagine that rash lining your esophagus and you try to swallow food. Sounds terrible to me.
So what does all of this mean? It means that at 20-months old chase can only eat his prescription formula, summer squash, carrots, black beans, avocado, quinoa, olive oil and pure maple syrup. Everything else we've tried falls into one of the above categories.
That means no processed foods, no take-out, no fast food, no conveniences. Everything we feed him we cook ourselves. We can't take the risk of any cross contamination. We started buying organic, just to be sure a certain food is safe. Did you know non--organic black beans run the risk of being soy contaminated? I didn't, but I do now.
So where does this leave me? Before Chase, I honestly believed many mother's out there exaggerated allergies. I mean really, what the heck? Can that many kids really have problems? I also rolled my eyes at organic, natural, non-gmo, etc. I thought it was a clever marketing ploy to waste our money. Food is food, right? Wrong!! For us, food is not food.
My transformation became clear in my eyes one day after grocery shopping. I came home with my organic groceries from the high priced specialty store, packed in my paper shopping bags. My task at hand, cooking all my baby food from scratch. I was unloading my groceries from my new car, which just happened to be a Subaru when I realized I was one of those moms i used to secretly call "crazy allergy hypochondriacs."
The funny thing was I didn't mind my transformation, I felt empowered by it. The thing is, I have learned so much from my son. I have learned how to read labels and I have learned about the foods that I feed myself and I feed my family. I learned if I can't pronounce it, I don't want to eat it, because I don't know what it is.
We have implemented major lifestyle changes for the entire family. Clearly, we don't limit our diets to my son's safe food list, but regardless our diets are forever changed.
Cooking takes longer now, grocery shopping is more expensive, but we all feel great. Just by committing to a more natural diet I've lost noticeable weight. I feel energized.
My son, unlike many children with traditional allergies, should outgrow Fpies and his food protein issues. The hope is one day I could feed him all the fast food and junk food a heart could desire. My hope is that his heart never desires that junk, and he grows up appreciating the positive changes his rare diagnosis has had on me and our family. I wouldn't wish this allergy on anyone, but since it is our reality I am committed to learning as much as I can from it.
**Victoria Warren is a reporter with WHDH-TV Channel 7 in Boston and a volunteer with the FPIES Foundation. Follow her on twitter at VWarrenon7