The Beginning
Almost as soon as she could talk, M2 told me her head hurt. Sometimes I could link the headaches to hunger or to lack of sleep, but often I could not find a cause. I mentioned her headaches at "well child" visits and was advised to make sure she was drinking enough water.
I also noticed that M2 was dropping off of her growth curve. She has always had petite bones and has been at the lower end of the weight curve, but by the time she was 5 her height had dropped from the 80% to 35%.
Again, the pediatrician told me not to worry. Some children have what is referred to as “delayed bone age”. At birth and through toddlerhood, they will follow a curve that correlates to their adult height percentile. In early childhood, however, the height percentile will drop, but these children will continue to grow late into the teenage years, eventually catching up to their adult height percentile. This made sense to me, although my instinct continued to stir, and I could not set aside the sense that we were missing something.
M2's stomachaches began right before the start of Kindergarten. They began innocuously enough; sometimes after a birthday party she would want to lie down (certainly, it was too much cake), or after dinner (a long day...she’s tired). As the stomachaches became more frequent, I brought it up to her pediatrician.
He suggested that I keep a diary of when the stomachaches were taking place. I couldn’t find much of a pattern at all. They continued to get worse, and sometimes she would run off of the soccer field in the middle of a close game, and just lie on the sidelines. She loved soccer, and something was not right at all.
She said her legs hurt at night. (Growing pains, I was told.) She didn’t always want to go to play dates with her friends. (Kids do this sometimes.) Her headaches got worse. (How much screen time is she getting? Have you tracked that water intake we talked about?) She began to get rashes on her hands. (Dry skin, perhaps?)
I will pause to admit that sometimes I am a hypochondriac. Our pediatrician has talked me off of the ledge many times, such as the 2:00 AM phone call when newborn M1 was screaming and unable to breathe. I called the emergency on-call doctor line, and mercifully reached our own pediatrician. With great patience and tact, he talked me through the process of suctioning his tiny little nose. (In laymen's terms, I called the emergency line for a booger.)
I finally realized how badly my sweet girl’s condition had deteriorated during a family trip to Yellowstone National Park. We were traveling with my parents (two of M2's very favorite people), to one of the most picturesque places on this planet. There were so many things to inspire M2’s art! Deep shades of turquoise, her favorite color, bathed the bottom of every hot spring and sulfur pool. Waterfalls danced down the rocky cliffs. We went on spectacular hikes and ate wonderful food. M2 did want to get out of bed; not even for my mom. She was weak, exhausted, and said her stomach felt like it was full of glass. We offered her crackers, because they are bland.
While I've already confessed to my own hypochondria, I would also like to say that I am a person who practices what I will call "accurate hypochondria". Brett will be the first to tell you that when I have a hunch that something is wrong with me or the kids, you'd best listen, because I usually turn out to be right. In this case, my Mommy Danger Meter was at a level 10, and I lobbed an immediate call across several timezones to the pediatrician back in Virginia.
The nurse on the phone booked an appointment for the day after our return, and I received a call shortly thereafter from our very own doctor. He assured me that this time I was not being alarmist, and we could no longer ignore the vague pattern of headaches, stomachaches and growing pains. We would receive all of the blood panels, and he would not stop until we could get to the bottom of M2's pain.
We got home, had all of the medical tests, and waited. We waited until that afternoon when I found myself mid-penguin flock, herding children and chasing a bad phone connection. That day was the beginning of the diagnosis that restored M2's health, radically changed our family's eating habits, and caused a lot of tears at birthday parties (the cake! the goldfish! the pizza!).
Up next....
I will give a little celiac primer: which lab tests led to M2's diagnosis, why I think all suspected cases should have a scope and biopsies to confirm, as well as how we ended up getting M1 diagnosed with celiac as well. I will also share some of our favorite gluten-free foods, some recipes and how to talk to kids with a chronic health condition.
Until then, stay well and love each other!
~~~Andie
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