food intolerance

Part III–eating paper, throwing tantrums, and seeing more doctors

Keira had always been a very picky eater, but now she was starting to eat things that were not food. Sometime in her toddler and preschool years, I forget exactly when, she started to eat paper. At this age, my kids are natural hoarders. Keira was no exception. She had plenty of junk in her bed–from stuffed animals to pillows to books. I noticed the books she stored in her bed were all chewed on. I saw that the upper right corner of these books all had bites taken out of them. It looked like a bunny ate these books for afternoon snacks. It was obvious little teeth were tearing at the pages of our favorite picture books, but we did not have any rodents in the house. Again, I wish I’d known at the time what I was dealing with. And for anybody reading this who is going through something similar, this is a sign of pica which is found in people with nutrient deficiencies. In fact, according to one PubMed study, “Underlying celiac disease should be considered in children with persistent pica and growth failure even if gastrointestinal disturbances are minimal.” And just FYI, Keira was very petite, and growing less and less each year.

At the age of 3.5, some symptoms not related to the digestive tract started to take shape as well–tantrums, to be exact. And these were not your average fits. I’d had one older and two younger toddlers and many friends with children by this point in my mothering career, and not one of them would throw fits like this. These outbursts could be over something as simple as the texture of her sock—we never knew what would set her off. And when she did “go off,” she would scream for hours. These screams were high pitched. Her eyes glossed over. At some point after her initial screams, she just screamed to scream, or so it appeared. She didn’t even look like she was of this earth when she had her fits—it was like her mind was somewhere else.

During this time in my parenting journey, I wanted to run for the hills. I did not know what to do with her anymore. Her fits not only continued, but they increased in frequency and intensity. They seemed to lurk around every corner. I hesitated to say anything to her, afraid it would cause an episode. I wanted so badly to be close to her and find a solution to whatever was causing her to act this way, but I let fear get the best of me. While I wanted to help her, I will confide that these fits put a huge {temporary} wedge between us. I’m not proud of this, and I really did not know how to help this fact, but that’s what it was—a fact.

As parents, Matt and I were just trying to raise four girls all four an under, and these fits proved to be quite challenging. We had three other kids who needed our attention, and we were not prepared for everything that awaited us. Despite the chaos happening under our roof, I did have a friend who was going through something a little similar to what we were going through. When we talked about our children, she mentioned she had found an allergist who was starting to help her son. I was excited for her, and I thought maybe that was the route we should take. So I looked up allergists in town thinking I might find help.

I ended up getting her an appointment with a random allergist in town in the Spring of 2010. I thought maybe Keira was allergic to milk. She did have those hives as a baby. Could she just not know how to express her pain or thoughts and so she screamed? I just knew I’d leave that doctor’s office with answers. So we went to the appointment, and I was less than impressed. The doctor was a joke. Basically, since she wasn’t seizing or dying before my eyes, she was fine. His arrogance was enough to knock me out of his office never to return. And I felt let down again. Worse yet, I felt I had let my daughter down again.

These awful fits of screaming lasted well into the summer when she was three. I remember a vacation we took to Colorado. We tried to make happy memories, and we did make some. But I will never forget being awakened by our screaming child at 2 am. We were in a condo with thin walls in a little ski town. We were dumbfounded as to what we should do with Keira as she belted out in her highest pitch to date. To prevent waking our other children and guests of the complex, my husband lifted her into his arms and took her to the car to let her scream it out. Oddly enough, this wasn’t the first time we had to do this. I actually had to do the same thing when we were staying in a hotel in Illinois when she was about 16 months old. I remember being clueless then, too. All I could do at midnight in my car in a hotel parking lot was wait for her screams to end. I recall my mom, who was staying with us at that hotel, saying she could hear Keira screaming in the parking lot—my mom was in our hotel room. Fast-forward two years later and here we are again.

After Keira’s fourth birthday that fall, her father and I grew more perplexed. We were worn out and I remember wanting to give up. I would never actually give up on my children, but not seeing an end in sight can play evil tricks on your brain. And when a thinker like me is given the time to imagine what could happen to their child they don’t know how to help and seems to be getting worse with every birthday, they go to the deepest darkest corners of their mind. Places I don’t care to ever visit again. No hope or faith rests in these places, and sadly, I spent most of my time there. This continued for months until the summer before her fifth birthday. By now, we were finally seeing some improvements in her demeanor. She wasn’t screaming as often or as intensely. She was easier to get along with. Our family life seemed to be happier, but we hadn’t reached the end of the tunnel yet. The fits still happened, and a new symptom started. She was complaining of tummy aches, constantly. That’s when I remembered my friend who sought help from an allergist. I was nervous I’d be laughed out of his office like I was at the previous allergist’s office, but I decided to call him and see what he had to offer.

A year after learning about him, we finally went to this allergist my friend recommended–who is actually a PhD and an MD. I found out he is a biomedical doctor—I didn’t even know what that was. I just knew he was going to help my kid. We sat through blood draws, skin pricks, and many painful screams. It wasn’t a pleasant visit, but I was willing to do whatever it took to help my baby. From these tests I learned what and IgE (a “true” allergy, think anaphylactic shock) is, and also what an IgG is. Living in the Midwest, I certainly knew what “true” allergies were, but I’d never heard of an IgG reaction. These are the more delayed immune responses—and they cause multiple symptoms. Well, Keira had IgE and IgG reactions. We were instructed to start allergy shots and remain off several different foods in order to heal her gut. “Heal her gut?” Yep, I was wondering what in the world I was uttering—I didn’t know anything about leaky or permeable gut at the time.

That fall in 2011 we stuck with our very strict diets. I had two other children who also saw this doctor, and their tests all came back with different allergies and sensitivities. This meant that I was cooking one meal for my husband, Kenli and me; one meal for Keira; one for our third daughter, Kaelyn; another one for our fourth daughter, Makenzie; and on top of that I was making baby food purees for our fifth daughter, Karys. This was financially, physically, and emotionally taxing. I was constantly focused on what to feed our kids and when their next allergy shot was due—because God forbid we went past the window of time and had to start over. But guess what, that actually happened.

In December 2011, I called and called the doctor’s office to order new vials of the serum for their allergy shots, but I never received even a phone call back, and we missed our window. About the same time, my kids were visiting my mom without me there, and she accidentally gave them a cookie that had one of their IgE reaction foods in it. I rushed over there expecting the worst—Epi-pen in hand. When I got there, everything was calm and cool. Nobody was freaking out. Everyone was breathing normally. I didn’t even see hives. And that’s when I said screw it! I was done, DONE, with this “fix.” I felt that the system failed us once again. I was done paying for it with my sleep, sanity, and money.