“A brain tumor until proven otherwise”

At the beginning stages of diagnosis, we were told this could be a brain tumor. Thankfully, that wasn't an accurate statement.

by | Jan 10, 2020

It started with a seizure.

It started with a seizure when our daughter was just 12 months old. My wife was at home with her and immediately called 911. We brought her to the emergency room where doctors told us that she had a febrile seizure — something relatively common to young children that most simply grow out of. We were referred by our pediatrician to a neurologist. After discussing the event with him, we landed on it being either a febrile seizure or breath holding spells (also common in young children). We decided not to go forward with further testing at this point as she had no other symptoms.

Roll forward almost 12 months later and an additional one or two episodes of what we felt very confident were just breath-holding spells. They almost always came after a minor injury or scary moment. She would fall or something minor would happen and then she would wind up like a big cry was coming and then all of a sudden lose consciousness. It was one of those things that, our doctor said, looks scary but is rather harmless. However, around this point she was starting to show some other strange signs. She was vomiting during play and while sleeping. Because of this, we had began working with our pediatrician to schedule a follow-up with neurology for further testing.

One day shortly after, my sister came to visit us with her two kids. They all went to the neighborhood park to play and N had another vomiting incident. They had just gotten home when I arrived from work. We ordered pizza for dinner and the kids went to bed. That night, N ended up throwing up in her sleep. The next morning, our visitors left and we ended up making several back and forth calls to our pediatrician in an effort to move up the testing dates.

Later on that day after putting N down for a nap, I received a call from our pediatrician (odd to me, because it was usually a nurse representing her office). She was very aware of our daughter’s recent symptoms and the history of seizures-like activity.

A call from our pediatrician.

“I’m calling because I’m worried about N. How is she doing?” she asked. I let her know about the recent vomiting episode. What came out of her mouth next made my heart sink to the pit of my stomach. “I don’t feel like the test dates are soon enough. I want you to pack your bags and go the emergency room,” she said.

“I spoke with her neurologist and the fact that she is vomiting while sleeping is very concerning. Vomiting while sleeping can happen when lying down because more pressure is put on the brain. We must assume she has a brain tumor until proven otherwise. The E.R. is your fast track to the diagnostics she needs.”

P.S. The phrasing may not be a 100% accurate quote because this happened so quickly and almost a year ago at the point of writing this post.

The Hospital Visit

As you can imagine, we packed our bags and headed to the hospital. N was admitted right away. After some initial tests they began to treat her for (what they believed to be) constipation. As it was late in the evening, they admitted us overnight for the neurological testing that our pediatrician was requesting. This night was agonizing. She couldn’t eat until testing the next morning, which actually turned out to be testing the next afternoon. She was miserable. So were we. Seeing her in that hospital bed was absolutely heartbreaking.

N receiving an EEG.

However, because of this visit we learned that our worst fears would be confirmed false. Thank you, God. She did not have a brain tumor. Her neurological testing came back absolutely normal. But, constipation? At the time it seemed to make sense. She was so backed up that she was vomiting. They prescribed her Mirolax for the constipation and sent us home.

She was doing much better. For the next couple of weeks, we fed her Mirolax each day which kept her regular and not vomiting. But, when we decided to stop the Mirolax (you know, because you can’t take it forever), the symptoms returned. At this point, her belly was so bloated and round that we knew we were missing something. This couldn’t be normal.

Our visit to the G.I.

Our pediatrician referred us to a gastroenterologist who saw her within the next week. This was just a couple of months after her 2-year-old birthday. After hearing her symptoms and history, she told us “I’d put my money on Celiac Disease.” This was the start of the diagnostic journey, which you can read about here.

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