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Sleep Studies?

Posted by on Oct. 29, 2015 at 9:53 AM
  • 6 Replies

My son had a sleep study In sept. When we got the first report back (the non-official report one) she said that she didn't see anything abnormal on the report and they just needed the doctor to sign off on it and we'd be set until he needed to see his oxygen doctor again who happens to be out right now due to breast cancer. I wanted to wait until she was back in the office if possible since she's known him since birth.

We'll switch doctors if we have too... anyways, another doctor randomly looked at the report a couple weeks ago, and decided he had a 160+ apnea events, and a 140 destats on his study. I don't even know how that's physically possible?

When I asked them what that meant, she said that's why they ordered the EKG and Echo because it could mean he'd have heart damage. I asked them if he was having that many a night, wouldn't his home monitors go off? (He never destats at home and he's always sleeping WITH someone, and no one in our family has EVER seen him hold his breath or show signs of an apnea event. He also never had them in the NICU and he spent 5 1/2 months there.)


De-statting, he'd done a couple times when he got a cold after he'd come off oxygen and had to go back on it for a few days when we first started weaning him, but since he's been weaned and hasn't been sick at all,he's never set his monitor off at home.

She said since they didn't even start hooking him up until after 1030pm (though we were there at 630pm ready to get hooked up) and she didn't even have all the leads on him until after 1am, that the study's main recording was from like 1am to 5am... which he woke up at least 3x to nurse during that period too.

I was laying next to him the whole night, he never stopped breathing, slept pretty well, showed no signs of distress, apnea, or signs of restlessness from oxygen issues.

When he has low oxygen levels, in the 85-90 range, he acts irritable and stressed out, you can tell behaviorally that something is wrong, that's my first warning sign that he was getting sick, is he would stop being his normal happy self during play times and act irritable. 

He hasn't acted that way in months. I don't understand how it's even possible that their machines picked up over an epidsode a minute during that 4 hours, i told her something doesn't sound right, because if he was "that bad" wouldn't he be showing other clinical signs of a problem?

Right now, he finally got him gaining weight, he's still breastfeeding, he eats solids, he's walking, talking, playing well with other kids socially that are his own developmental age, and plays well with toddlers older than him too.

Despite being a 24 weeker, we've had no issues with him developemntally yet, so when I get the initial report back stating they didn't see anything weird, and then a few weeks later, get told THIS.... 

I feel like something is drastically wrong with what I'm being told? She said she's going to have another doctor re-review it again and call me by friday, but she said on the phone that it she's never seen a sleep study so abnormal/bad before... and he should be showing other clinical signs of problems if it was real... so she was just as confused as me when I logically pointed out that his clinical signs aren't matching the results i'm being told on the phone, or his home monitors, or his lack of apnea history during his 5 1/2 months in the nicu before he came home.

I even slept with my hand on his back the whole night last night, and had trouble sleeping because I was watching him, he was just fine all night. breathed pretty even the whole night, woke up 2-3x to nurse, and was otherwise pretty content. Woke up and ate peaches and peanutbutter for breakfast and some cheerios. 


Does this sound like it's even possible that that sleep study report was right? I'm really confused and don't understand how his sleep study is even possible to "be" like that when there's no other clinical signs of evidence to back this particular report, I know she failed to get all the leads on him, and they are saying they can tell the difference between "artifacts" and "real episodes" but that many? in that short a period of time when he's never had a history of either issue being a problem, this was just for insurance purposes to state he was okay to be off oxygen full time unless he was sick and needed it to help.

................ He's never shown any signs of destatting at home, so I don't understand how their machines could show this, when no one else ever saw signs of this in the nicu, or on the monitors at home, or symptoms of an underlying health issue that would be "this bad" .... she said he wouldn't be acting like a 100% normal kid if this study was true, so she was confused by the results.

Ugh.

by on Oct. 29, 2015 at 9:53 AM
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Replies (1-6):
Momof4AEMW
by Gold Member on Oct. 29, 2015 at 10:53 AM

My 27 week daughter has obstructive sleep apnea.  She was in the NICU for 3.5 months, then on oxygen and apnea monitor until 26 months.  My kids did all have apnea/Brady spells as preemies in the NICU but not after she came home.  Her sleep apnea was not discovered until after oxygen/monitoring ended.  Monitors did not go off.  We believe the oxygen helped blow the airway open at night so the spells did not show up until after she was off it.  Her first sleep study showed obstructing 7-9 times an hour and dropping o2 level to 70.  

What I don't get is why you are getting such conflicting data/answers?  I also wonder if the spells they showed were isolated to the breast feeding times, as he'd work harder during that time, then take a breath when needed.  Did you tell them when you were feeding?  They should have notated the feeding times to account correctly.  Please let us know what you find out.  I'd be confused too with what you have been told!

kajira
by on Oct. 29, 2015 at 11:02 AM

He's monitored at home too, and the data doesn't match what we are seeing. She was saying that these events were every minute for the 4 hour period they were looking at the study. Even if I was nursing him, he doesn't destat when he nurses. I've nursed him a lot on monitors at home and it never set his monitors off, and he's never destatted below like 89.

If he gets below 85, he turns blue fast, he's super pale and you can tell quickly if he starts going in the 80's physically. His skin color, eyes and lips change. He hasn't had any color change, or symptoms of his dropping below 90.

I have his machine set to 92 at home, and every once in a while when he's moving around, it will set the monitor off when he curls his toes, but his doctor said that's normal as long as he doesn't stay down. It sounds almost impossible for him to destat that many times in a 4 hour period, and not show other symptoms. If he's having this many apnea episodes during sleep, we should have noticed, you can tell when someone swallows, or holds their breath, and my grandma who's a respirtory therapist has stayed with him when he first came home on oxygen, and has been here the last month and hasn't noticed any signs that would match this study. She's held him during naps, and he' snever acted like he had an apnea episode.

If it was a couple of events in a 4 hour period, I might believe it, but this is almost impossible to be real. They even said this was so bad that he'd be showing clinical signs of deterioation the longer he'd been off oxygen if he was having this much trouble, and he's done nothing but grow stonger, more atheletic, have less issues wiht his lungs no signs of asthma, he's climbing, walking, running, eating, talking, I just don't see any clinical signs at home that match the sleep study.

Quoting Momof4AEMW:

My 27 week daughter has obstructive sleep apnea.  She was in the NICU for 3.5 months, then on oxygen and apnea monitor until 26 months.  My kids did all have apnea/Brady spells as preemies in the NICU but not after she came home.  Her sleep apnea was not discovered until after oxygen/monitoring ended.  Monitors did not go off.  We believe the oxygen helped blow the airway open at night so the spells did not show up until after she was off it.  Her first sleep study showed obstructing 7-9 times an hour and dropping o2 level to 70.  

What I don't get is why you are getting such conflicting data/answers?  I also wonder if the spells they showed were isolated to the breast feeding times, as he'd work harder during that time, then take a breath when needed.  Did you tell them when you were feeding?  They should have notated the feeding times to account correctly.  Please let us know what you find out.  I'd be confused too with what you have been told!


Momof4AEMW
by Gold Member on Oct. 29, 2015 at 11:10 AM

I agree with you that would be obvious, I just don't know why you were told otherwise.  If the apnea was that bad, the techs would have stopped mid study and put a cpap in him, then continued the study.  I feel someone isn't reading something right or there were connection issues with the leads.  But I still might ask for a second study depending on what this next doc review says.

Quoting kajira:

He's monitored at home too, and the data doesn't match what we are seeing. She was saying that these events were every minute for the 4 hour period they were looking at the study. Even if I was nursing him, he doesn't destat when he nurses. I've nursed him a lot on monitors at home and it never set his monitors off, and he's never destatted below like 89.

If he gets below 85, he turns blue fast, he's super pale and you can tell quickly if he starts going in the 80's physically. His skin color, eyes and lips change. He hasn't had any color change, or symptoms of his dropping below 90.

I have his machine set to 92 at home, and every once in a while when he's moving around, it will set the monitor off when he curls his toes, but his doctor said that's normal as long as he doesn't stay down. It sounds almost impossible for him to destat that many times in a 4 hour period, and not show other symptoms. If he's having this many apnea episodes during sleep, we should have noticed, you can tell when someone swallows, or holds their breath, and my grandma who's a respirtory therapist has stayed with him when he first came home on oxygen, and has been here the last month and hasn't noticed any signs that would match this study. She's held him during naps, and he' snever acted like he had an apnea episode.

If it was a couple of events in a 4 hour period, I might believe it, but this is almost impossible to be real. They even said this was so bad that he'd be showing clinical signs of deterioation the longer he'd been off oxygen if he was having this much trouble, and he's done nothing but grow stonger, more atheletic, have less issues wiht his lungs no signs of asthma, he's climbing, walking, running, eating, talking, I just don't see any clinical signs at home that match the sleep study.

Quoting Momof4AEMW:

My 27 week daughter has obstructive sleep apnea.  She was in the NICU for 3.5 months, then on oxygen and apnea monitor until 26 months.  My kids did all have apnea/Brady spells as preemies in the NICU but not after she came home.  Her sleep apnea was not discovered until after oxygen/monitoring ended.  Monitors did not go off.  We believe the oxygen helped blow the airway open at night so the spells did not show up until after she was off it.  Her first sleep study showed obstructing 7-9 times an hour and dropping o2 level to 70.  

What I don't get is why you are getting such conflicting data/answers?  I also wonder if the spells they showed were isolated to the breast feeding times, as he'd work harder during that time, then take a breath when needed.  Did you tell them when you were feeding?  They should have notated the feeding times to account correctly.  Please let us know what you find out.  I'd be confused too with what you have been told!


Momof4AEMW
by Gold Member on Oct. 29, 2015 at 11:11 AM

When are the ekg and Ecco?

kajira
by on Oct. 29, 2015 at 11:16 AM

Nov 11th, if e go. but we were told not to go to it unless they had another re-review of the results that indicated the results were accurate.

Our oxygen monitor company and I talked, they've seen him clinically when they come out ot check on the monitors and wyatt, she's seen him in the nicu, at home on oxygen and since he's been off oxygen, she said she'd see clinical signs if this study was that bad, she's calling the hospital onour behalf to request they order a 1 month apnea study at home, where they can monitor him at night for a month with the monitors at home, and get a full report.

She said if this report was accurate, he wouldn't be healhy and someone would have noticed the apnea or clinical signs of deterioation since he's been off oxygen and all he's been doing is growing, hitting milestones and getting stronger. There's NO signs of apnea, or destatting in a regular, normal environment. And I'm not putting him through another sleep study until he can sleep through the night and have people explain to him what's going and have him cooperate.

The first one was pretty traumatic/hard on him, and he didn't cooperate enough to let her put all the leads on him, wouldn't leave the breathing sensor under his nose alone, or the one in his mouth they require in his mouth. In his sleep he was pulling the wires/sensors off too.

However, THEY said they could tell the difference between THAT and a real episode.... but right now, it doesn't look like it, because I Was up most of the night trying to keep the wires/sensors in place for them.

And that's another thing, I said if he was REALLY having trouble, they'd have had to bring oxygen in for him, so it medically doesn't make sense.


Quoting Momof4AEMW:

When are the ekg and Ecco?


jjamom
by Michele on Oct. 29, 2015 at 2:57 PM
1 mom liked this
I'd definitely have someone re-review the data. Is the ordering physician the one is out? Perhaps her office could have the data sent to a doctor she works with and/or trusts to review it. I would maybe give them a call and see if someone is filling in for her.
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