Low Oxygen Saturation (SPO2) Data Accuracy

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
colomom
Posts: 283
Joined: Mon Feb 19, 2018 9:05 pm

Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by colomom » Mon Apr 16, 2018 10:03 am

It has been my experience that doctors are often unwilling to accept home data because they do not know if the instrumentation is correctly calibrated. I suggest that you ask your son's primary care doctor to order overnight oximetry for your son. If your son's doctor orders the oximetry you will simply pick up a oximeter from a DME, hook it up to your son for a night or 2 then drop the unit back at the DME and a detailed report will be generated.
As has already been suggested I also recommend that you get a copy of your son's sleep study, be sure they give you the full study not simply the summery report. I suggest that you compare your son's oxygen saturations during the sleep study a year ago to his current nighttime oxygen saturations. If there is a marked change in your son's O2 levels since the study a year ago ask his doctors if another sleep study is warranted.

A couple of questions:
How old is your son?
You said that his sleep study showed mild apnea. Do you know what his AHI was? Do you know if his events were obstructive or central?
You mention that during the sleep study the tech woke your son up multiple times. Why did the tech wake up your son? Were you in the room with your son during the sleep study? If you were in the room did you feel that his sleep the night of the study was typical? Have you noticed any changes in his sleep since the study?

I do not have the level of expertise of many on this forum, but as a mom who has also struggled to find answers to my son's complex health issues my heart goes out to you and your son. Good luck to you! Your son is fortunate to have you advocating for him!

_________________
MachineMask

kasiahbug
Posts: 14
Joined: Sun Apr 15, 2018 11:32 am

Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by kasiahbug » Mon Apr 16, 2018 1:09 pm

A couple of questions:
How old is your son?
You said that his sleep study showed mild apnea. Do you know what his AHI was? Do you know if his events were obstructive or central?
You mention that during the sleep study the tech woke your son up multiple times. Why did the tech wake up your son? Were you in the room with your son during the sleep study? If you were in the room did you feel that his sleep the night of the study was typical? Have you noticed any changes in his sleep since the study?
He's 10 years old
I have no idea what his AHI was. Unfortunately, we were scheduled for a follow up to go over the results but he got admitted to the hospital for sepsis and we only talked over the phone. He was referred to ENT because they said Obstructive I believe. ENT did their "studies" and scopes and said not obstructive, likely from seizures or neck issues-- I took this to mean they don't know.
I was in the room with him, the tech said he had to adjust things. It was all night long, no kidding. And no, I even told his PCP prior to the results, it was messed up.

He's had many exercise tests and other things, I'm reading results now. He was on a beta blocker for a while and showed a lot of abnormal things, they just put that it was likely due to beta blocker. His most recent test showed the same and he's been off of it for a year, so obviously not beta blocker. He has thickened airway, which has not been researched other than to say he's not aspirating during swallow test.

I have the sleep study from 2015, they said was fine and no apnea at all --
But not the one from a year ago.

He's declining a lot. The school nurse just called and asked if he should still be doing adaptive PE because he overheats WAY too fast in less than 10 minutes. He's had severe cognitive decline as well, testing with neuro pshych showed IQ from 160 down to 65 in the last few years. He has severe amnesia events and fatigue.
Attachments
sleep study 1.png
sleep study 1.png (46.42 KiB) Viewed 2207 times
exiercise test.png
exiercise test.png (108.08 KiB) Viewed 2207 times

HoseCrusher
Posts: 2744
Joined: Tue Oct 12, 2010 6:42 pm

Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by HoseCrusher » Mon Apr 16, 2018 4:00 pm

From a little "outside the box..."

Many times toxins or heavy metals can result in cognitive decline and other severe health issues.

Unfortunately, mainstream medicine doesn't know how to properly test for these substances. You need to hook up with a functional medicine practitioner or a naturopath. This means that these tests would not be covered by insurance.

Mold and mildew are a good targets for the toxin tests and mercury and lead are good targets for the heavy metals test. IF these are contributing to the problem they can often be reversed resulting in improvements.

_________________
Mask: Brevida™ Nasal Pillow CPAP Mask with Headgear
Additional Comments: Machine is an AirSense 10 AutoSet For Her with Heated Humidifier.
SpO2 96+% and holding...

User avatar
colomom
Posts: 283
Joined: Mon Feb 19, 2018 9:05 pm

Re: Low Oxygen Saturation (SPO2) Data Accuracy

Post by colomom » Mon Apr 16, 2018 6:15 pm

kasiahbug wrote:
Mon Apr 16, 2018 1:09 pm
He's 10 years old
I have no idea what his AHI was. Unfortunately, we were scheduled for a follow up to go over the results but he got admitted to the hospital for sepsis and we only talked over the phone. He was referred to ENT because they said Obstructive I believe. ENT did their "studies" and scopes and said not obstructive, likely from seizures or neck issues-- I took this to mean they don't know.
I was in the room with him, the tech said he had to adjust things. It was all night long, no kidding. And no, I even told his PCP prior to the results, it was messed up.

He's had many exercise tests and other things, I'm reading results now. He was on a beta blocker for a while and showed a lot of abnormal things, they just put that it was likely due to beta blocker. His most recent test showed the same and he's been off of it for a year, so obviously not beta blocker. He has thickened airway, which has not been researched other than to say he's not aspirating during swallow test.

I have the sleep study from 2015, they said was fine and no apnea at all --
But not the one from a year ago.

He's declining a lot. The school nurse just called and asked if he should still be doing adaptive PE because he overheats WAY too fast in less than 10 minutes. He's had severe cognitive decline as well, testing with neuro pshych showed IQ from 160 down to 65 in the last few years. He has severe amnesia events and fatigue.
My son has had 3 sleep studies. The techs who ran my son's studies did not need to make constant adjustments throughout the night. It's good you told your son's PCP about your concerns with the sleep study, I wonder if they had a bad data feed somewhere with the constant adjustments.

Because of the complex health issues your son is facing it would be ideal for them to do a titration sleep study for your son to determine the best treatment for him. Often insurance hurdles are a barrier to doctors ordering all the testing that may be beneficial. One of the reasons I suggested that you try to have your son's doctor order overnight oximetry is because for my son overnight oximetry was the key to getting another sleep study ordered by his doctor and approved by our insurance.
My son was diagnosed with mild sleep apnea following his first sleep study and the doctor did not prescribe CPAP. My son's oxygen levels during sleep study 1 were normal. Six months later a second sleep study was ordered and approved by insurance because overnight oximetry revealed that my son was hypoxic. Sleep study 2 showed a much higher AHI and much lower oxygen saturations than he had in sleep study 1. My son is now using CPAP and has benefited tremendously from it. Our children are of course different people with very different problems, but if your sons oxygen levels at night have declined since his last study that may be reason to justify another sleep study.

I nearly reached the end of my rope trying to find answers and solutions to my sons health problems. The barrage of specialists, tests, and lack of real answers was incredibly frustrating. Fortunately I was finally able to connect my son with the right doctors who figured some things out and my son is finally improving. There is nothing harder in this world than seeing your child struggle. It sounds like you have some good doctors on your side, and hopefully you are getting closer to finding some answers and solutions. Best of luck to your family!

_________________
MachineMask