• 4 months ago

    Sleep study question

    We have an 18 month old with chiari malformation type 1. We're pretty sure he stops breathing at night so we had a sleep study done. They put the airflow sensor in his nose and it amplified his breathing to where I could hear it. There were multiple times where he went from sounding like Darth Vader with his breathing sounds, to were I could hear nothing, then after about 15 seconds or so, he'd start again. It's a holiday week, and I know it'll be at least another week before we find out for sure if he does stop breathing at night. I can't find any information on this sensor and how it works, and when I asked the aid if that meant he stopped breathing, all he said was he wish he could tell me what that meant.

    I'm wondering if what I was hearing meant that he probably did stop breathing. This test will most likely determine whether or not he has a decompression surgery, so I m a little anxious.

    I get this seems like a, "duh," sort of answer. But I'm trying not to jump to conclusions and see if maybe there's other reasons why you wouldn't hear the noise on the monitor. If maybe he was breathing quieter, or if it's a constant noise that should be made? Please that know that we're seeking helpful, kind, information. I'm stressed enough as it is worrying if he's going to need brain surgery so young, I'd rather you not leave anything nasty. I am just wondering how those sensors work. Thanks.


  • 4 months ago

    RE: Sleep study question

    Considering the background, I think you'd be well advised to wait for the doctor to answer your question about apneas. But I have a question for you.

    How is your 18 month old doing otherwise? Is he showing symptoms of CM? Developing normally?
      • 4 months ago
        I know, I've actually witnessed him twice gasping and choking in his sleep. I feel like I know the answer, I guess I'm just wanting someone to tell me I'm wrong lol. His symptoms are seizures, balance issues, swallowing problems, and what the drs and I have determined are headaches (he's banging his head on the ground on his bad days), he doesn't sleep all night either. He will cry out, or gasp for air, at least 3 times a night. This makes him so ill. We also have wondered if his excessive thirst is a symptom too. When I say excessive, I mean will down a cup in about 5 minutes and want more. He also has a bladder problem. He will wake up, have one cup of water, and by the time I make it to my sitters house, a 45 minute drive, he's peed through his diaper and it's a lot. A lot of these issues were the exact same as his dad's who had the cm type 1 too. We didn't realize it until I got his records a few weeks ago.