A Story of Childhood Asthma – A Diagnostic Swing and a Miss
According to the American Academy of Pediatrics more than 23 million Americans suffer from asthma with more than a quarter of those being children younger than 18 years old. My son is among those numbers and this month I’m sharing his story for the first time. The first few years were rough but we’ve learned to cope with his diagnosis. This is not meant to serve as medical advice — it is simply what worked for us. As always, if you have medical questions, please visit your doctor. To read the full story, start here.
Watching a child’s health go downhill can be a scary, scary thing. At this point in our journey, my son had been throwing up every night for months. He was refusing food during the day because he knew he was just going to throw up at night and my formerly active little boy now spent his days laying on the couch.
We had already gone the rounds with our pediatrician and weren’t seeing any improvement so we were hoping a referral to the pediatric gastroenterologist would help us find some answers.
First Visit with the Pediatric Gastroenterologist
I liked the pediatric gastroenterologist on our first visit. He seemed sure of himself. I felt like he could solve this mystery boy of mine and get him feeling better. He was confident that my son had damaged his esophagus from all the vomiting and suspected that he had GERD (Gastro-Esophageal Reflux Disease).
GERD was an easy fix if it was found but it did require a scope under general anesthesia to diagnose. He offhandedly mentioned that with his symptoms it could also indicate that he had stomach cancer so he wanted to do a stomach biopsy while he was in there.
I should have panicked at the mention of cancer but at this point I was just desperate for an answer. We scheduled the scope and hoped for the best.
Surviving the Scope
I mentioned at the beginning of this series that my son had some sensory issues. I was worried about how he would handle the scope but it turns out it was harder on me than it was on him. They let us stay in while they put him under (which was rough to watch. I’m not sure I’d recommend that as a parent) and when he woke up we were already by his side.
We went home and hoped for a simple answer.
Unfortunately, the doctors were again at a loss. His esophagus did show damage from the vomiting but no other signs of GERD and thankfully no stomach cancer. That left us back at the beginning. We stopped using the GERD meds he’d been on for several months and scheduled another appointment with the pediatrician.
Taking Charge of my Son’s Health
Back at the pediatricians office I met with another doctor who was available on short notice. We had been waiting months and months for an answer and I wasn’t about to sit around and let my son suffer while we waited for an opening with his regular pediatrician.
The new doctor looked over his records and said, “hmmm, that looks like he has a brain tumor”.
She had said it so casually that I was sure I had heard her wrong so I asked, “what was that?”
“A brain tumor. When we see vomiting only at night it’s a very strong indicator of a brain tumor.”
I had handled the stomach cancer remark from the other doctor with ease but this one shook me. We had a family history of brain tumors. Not only that, but emotionally I was fragile. We had just lost our 4th son at birth and the thought of loosing two children in a year was too much.
My memory of this time is a bit of a blur. Somewhere in there was an appointment with an eye specialist to see if they could find evidence of a brain tumor and then we were scheduled for a sedated MRI to rule it out.
The Sedated MRI
The morning of the MRI we drove to the children’s hospital with a lot on our minds. We were emotionally drained by this process. Our son was going downhill fast, anyone could see that. He’d now been throwing up every night for a year. I’d stopped putting sheets on his bed and our 2:00 am bath time was becoming routine.
Everyone at the children’s hospital was amazing. They brought a therapy dog out to play with my son while he waited and wheeled him around in a wagon after the procedure.
Me, on the other hand. I was a mess. Fortunately we didn’t have to wait long for results. They took him back for the procedure and before he was even fully awake in recovery the dr. came out to tell us that the results were normal.
This time I was grateful that we got no answers but it also meant that were were back at square one . . . again.
We went home, ready to schedule our next appointment with the pediatrician and demand some answers.
A Story of Childhood Asthma – Read the Entire Series
A Story of Childhood Asthma – When Diagnosis is a Mystery (Part 1)
A Story of Childhood Asthma – A Diagnostic Swing and a Miss (Part 2)
