cystic fibrosis

Cystic Diagnosis Part 2: Warning Signs

Katie’s symptoms were subtle at first. She had colds that took a long time to shake. She had a hard time sleeping at night when she was sick with colds. Looking back, before her diagnosis, she had a LOT of sleepless nights. She was diagnosed at 17 months of age, and up until that point, Julie and I both wondered when she’d start sleeping through the night on her own. We felt that it was taking forever for her to do that.
But, that in itself wasn’t a big deal. We repeatedly asked our doctor (who had been a pediatrician prior to going into family medicine) if she thought Katie’s constant colds were cause for concern. Our doctor said no, because most kids will get up to 10 colds a year. It didn’t seem unusual. Looking back, we didn’t have any cause for concern as Katie wasn’t exhibiting any of the other symptoms when she was younger (under a year old)… symptoms like failure to thrive, constant appetite, underweight, etc. So, we didn’t worry about it much.
As well, she has always had a bit of a big belly. Nothing too major, but her belly has always been pretty big compared to the rest of her body.But, that’s not really a big deal and she’ll likely grow out of it.
The one other symptom that we had always noticed, but didn’t pay much attention to was her poop. It was always really smelly and some of her food seemed to come out pretty undigested. But again, looking back, we didn’t clue in to this until after the diagnosis.
Then, on Friday August 22, I was changing Katie’s diaper and she had some kind of a brown walnut shaped thing coming out of her bum. I called Julie into the room. She didn’t know what it was either. So, we bundled her up and Julie took her to emergency.
Note: Katie wasn’t uncomfortable. It didn’t seem to hurt her.
Julie FINALLY saw the ER doctor after waiting in the ER for about 4 hours. By that time, the walnut sized thing had disappeared. The doctor told Julie that it sounded like a prolapsed rectum. The doctor said it shouldn’t be a cause for concern, but to go see our family doctor the next week to investigate further. The doctor said prolapsed rectums are typically caused by one of three things:
  1. It’s random. It won’t happen again. Don’t worry about it.
  2. Celiac disease – dietary disorder where the body can’t digest wheat properly.
  3. Cystic Fibrosis – but… the odds are quite low on this, so don’t worry about it.

So… we waited through a long and agonizing weekend before booking a visit with our family doctor the following week.

By Todd Dow

Author, Geek, CF fundraiser & Cancer Survivor. My family, baseball, infosec, privacy & devops are a few of my favorite things.

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