Low Oxygen Saturation (SPO2) Data Accuracy

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
kasiahbug
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Low Oxygen Saturation (SPO2) Data Accuracy

Post by kasiahbug » Sun Apr 15, 2018 12:05 pm

My son is being investigated for a condition that is often fatal - these kids often die from high CO2 because they stop breathing. He has all of the symptoms of this, but his last sleep study a year ago showed mild apnea. (He was woken many times during the night by the tech I'm not even sure how they got any info). He has some severe amnesia events and other things. Also, so many exercise tests and they all say that he would show more distress if the oximeter was accurate, but now we know with this disease, it's one of the side effects- the kids show zero response when levels drop, no matter how low.

I sent a report to his PCP who was very concerned but when he talked to the sleep center they only said home monitors are usually pretty inaccurate. Would this be the case? Should I be concerned?

His PCP said I need to keep advocating. His BP goes very low (60/40) and very high (180/160) and he was hospitalized for high BP and discharged to cardiology who ordered a BP cuff and it showed the same things so they can't treat because the highs are too high and the lows too low. Also a heart monitor shows his average pulse is 110 with spikes of 186 while sitting and dips to 54 - His normal is about 125.
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palerider
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by palerider » Sun Apr 15, 2018 12:48 pm

kasiahbug wrote:
Sun Apr 15, 2018 12:05 pm
My son is being investigated for a condition that is often fatal - these kids often die from high CO2 because they stop breathing. He has all of the symptoms of this, but his last sleep study a year ago showed mild apnea. (He was woken many times during the night by the tech I'm not even sure how they got any info). He has some severe amnesia events and other things. Also, so many exercise tests and they all say that he would show more distress if the oximeter was accurate, but now we know with this disease, it's one of the side effects- the kids show zero response when levels drop, no matter how low.

I sent a report to his PCP who was very concerned but when he talked to the sleep center they only said home monitors are usually pretty inaccurate. Would this be the case? Should I be concerned?
The PCP is wrong. SpO2 monitors are a very simple science, and the cheap home monitors are accurate. Hell, that's what the respiratory therapists wander around with in the hospitals.

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kasiahbug
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by kasiahbug » Sun Apr 15, 2018 1:37 pm

I also told him it happens all the time, in the hospital and everywhere. We even had a pulmonologist say that it was impossible to drop that low (70) and not show signs except out of breath. He did his own "trial" having him run down the hall and it said 76 and he blamed constriction on vessels or something, but wasn't sure. Said it was a state of the art machine and new and didn't understand.
Something is going on and I feel like no one is listening.

PCP is concerned and does know, same with cardiologist. He is ordering a C-Pap to start ASAP.

Does this look worrisome at all? The Image above?

HoseCrusher
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by HoseCrusher » Sun Apr 15, 2018 1:43 pm

You can check the accuracy of your oximeter by taking it to the Fire Department, or Hospital, or Doctors office and simply compare what your device reads with their calibrated units.

There are some artifacts indicated in the report but the desaturation cluster at around 08:00 is concerning. It is interesting that the heart rate dropped off during the desaturation. Your doctor should have more information on this.

I would suggest you continue to monitor a few more nights and print out and bring the graphs to the next doctors visit.

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kasiahbug
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by kasiahbug » Sun Apr 15, 2018 1:55 pm

I have so many reports -- they mostly look similar, although a few nights had fewer events.
He had the same drop at 8 while at the hospital, but it's always "interesting" - For ten minutes it was between 70-80.

This is the report I sent to Dr first when he said he was concerned but the sleep center said home oximeters are unreliable.
And his response:
We should consider CPAP that we discussed a few months ago. I would set the alarm at <88. It will wake him up and hopefully reset his cycle. I know this will be going off often. Could set <88% for greater than 3 minutes and alarm after 20 seconds <85%. I’ll reach out to sleep medicine clinic with this report and get their feedback.

And the response after contacting sleep center
I spoke with sleep medicine. They thought based on his last sleep study showing his minimum oxygen at 90% and without hypoventilation, they did not feel CPAP was obligated. They did think it might help and could be worth a try. She mentioned that the home pulse ox machines can be unreliable and would not be too reactionary to that. That being said, after speaking with Rebecca with Dr. F and Stryder’s current level of functioning, I think it is worth a try. I put a request in for a machine.
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HoseCrusher
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by HoseCrusher » Sun Apr 15, 2018 5:49 pm

When the finger is moving around inside the oximeter the signal can get screwed up. This is listed on the report as an Artifact.

This last report shows 21.3% artifacts. This can screw up the readings. A good goal is to keep the Artifacts below 1%.

I don't know how old your son is but some ideas on stabilizing the oximeter on the finger are to use tape, or put the hand in a glove or sock. If none of that helps there are other designs that are worn around the wrist with a small probe going over the finger. They are more expensive but tend to be tolerated better.

Also keep an eye out for irritation on the skin of the finger. Most oximeters carry a warning about extended use. Usually this is not an issue but some people have sensitive skin and sleeping all night with a "closepin" on your finger can result in some discomfort.

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cpap626
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by cpap626 » Sun Apr 15, 2018 6:34 pm

I use an 02 meter called the 02 vibe. it goes around my thumb like a ring and dosent go on the finger. You can set an alarm so it vibrates at a certain point. Then it gets uploaded to your phone via bluetooth. I like it for long term 02 monitoring. I can barley feel it is on me.

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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by raisedfist » Sun Apr 15, 2018 7:33 pm

Are you talking about this condition? https://ghr.nlm.nih.gov/condition/conge ... n-syndrome

From the above site:

...In addition to the breathing problem, people with this disorder may have difficulty regulating their heart rate and blood pressure, for example in response to exercise or changes in body position.
If so, it may be worth contacting a specialist if there happens to be one in your area: http://cchsnetwork.org/resources/physician-list/


Did they monitor your sons carbon dioxide levels when he slept in the lab? It would be great if we could see the copy of the sleep study report (obviously, please redact any personal identifying information).

I find the pulmonologist very suspect...most likely their refusal to believe that someone can be walking and talking, asymptomatic and have an oxygen saturation of 75%, means that they will never even attempt to investigate your son's problems in order to treat him.

If it were me, in my amateur opinion, I would try to go to your nearest and largest university teaching hospital where they have specialty clinics and expert physicians that people travel from all over to. You are clearly not comfortable with the care received so far, and from what I've read, I wouldn't be either.

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kasiahbug
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by kasiahbug » Sun Apr 15, 2018 9:39 pm

VERY similar to Congenital central hypoventilation syndrome but it's ROHHAD: Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation -- the biggest difference is the age and rapid-onset obesity.
https://rarediseases.info.nih.gov/diseases/10407/rohhad

There are no specialists in our area but he is being referred to a place in Chicago that does deal with it, but I've heard the wait list is years long so they are trying to at least consult with them on how to treat. Most kids end up on ventilators and dead before 13.

-- He went to a hospital in Portland that is a teaching hospital and no one knows what to do - but they are not dismissive. It's been frustrating. We even had one Dr say that if it were his son, he move out of Oregon.

The sleep study was over a year ago - he's had these episodes more recently but I'll see if I can get a copy. I'm interested in seeing it as well.

I'll try tape tonight -- He's 10 and honestly doesn't move a whole lot, but obviously some.

kasiahbug
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by kasiahbug » Sun Apr 15, 2018 10:06 pm

Oh - and I think there was so much artifact because I would take it off and put it on other fingers to see if it was low on all of them -- his O2 wouldn't go up for what seemed forever during some of the instances.

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Morbius
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by Morbius » Mon Apr 16, 2018 5:53 am

kasiahbug wrote:
Sun Apr 15, 2018 1:55 pm
I put a request in for a machine.
The oxygen saturation drops look to be REM-related. However, one is unable to determine their cause with the limited information provided. If they are due to alveolar hypoventilation then CPAP will probable not help, and BiPAP should be employed.

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Morbius
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by Morbius » Mon Apr 16, 2018 5:58 am

kasiahbug wrote:
Sun Apr 15, 2018 9:39 pm
I'll try tape tonight -- He's 10 and honestly doesn't move a whole lot, but obviously some.
The first 3 hours look to have a lot of motion artifact. After that, looks pretty stable to me.

kasiahbug
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by kasiahbug » Mon Apr 16, 2018 8:03 am

The oxygen saturation drops look to be REM-related. However, one is unable to determine their cause with the limited information provided. If they are due to alveolar hypoventilation then CPAP will probable not help, and BiPAP should be employed.
Is there a way to see if it's alveolar hypoventilation or is that something the sleep lab has to do?
Most kids with ROHHAD end up with Cpap first and then trachs at last - some only hae biPap, but they almost never do good with Cpap, but we have to start somewhere unless the specialists actually consult and tell the Dr what to do.

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Morbius
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by Morbius » Mon Apr 16, 2018 9:16 am

kasiahbug wrote:
Mon Apr 16, 2018 8:03 am
Is there a way to see if it's alveolar hypoventilation or is that something the sleep lab has to do?
Sleep lab. They need to monitor ETCO2. That will determine if BiPAP is needed.
...they almost never do good with Cpap...
Course not. It doesn't fix what's broken.

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Morbius
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Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by Morbius » Mon Apr 16, 2018 9:21 am

Morbius wrote:Course not. It doesn't fix what's broken.
OTOH, there's no law that says a patient can only have one disease component at a time. If there is some obstruction present, then some benefit may be gained from CPAP. But if you meet criteria for BiPAP, IIWY I would just go striaght to BiPAP.