Sleep study results in, any input?

[colomom]

My teenage son was initially diagnosed with OSA and hypoxia, he has been using his has been CPAP machine for over a year. His sleep has greatly improved with CPAP, but it is still far from ideal. My son still has a great deal of daytime fatigue and aerophagia has been a major issue for him. He recently underwent his 2nd titration study with the hope that his machine's pressure may be able to be lowered to relieve the aerophagia. The reason my son's doctor wanted a study before making any changes to his treatment is that she was concerned that hypoxia could become an issue again if we lower the pressure. During the titration study they ended up keeping the pressure at it's current setting of 9 for the entire night because my son's O2 sats were not high enough to allow them to decrease the pressure. Since the titration study showed that dropping the pressure to relieve the aerophagia is not an option I plan to request that my son's doctor to move him to a Bilevel machine. Which brings me to my questions:
Is there anything noteworthy in my son's titration study?
Is there anything in the study that might help support my argument that my son should be moved to a Bilevel machine?

Sleep study details:
Collection notes:
Therapy was initiated at a starting pressure of 9cm H2O and titrated to a final pressure of 9 cm H2O. Possible bruxism present throughout study. Patient exhibited leg movements throughout study some followed by post arousal hypopneas.
Sleep latency:18.8
Total sleep time:388
Sleep efficiency: 81%
Total stage changes: 109
Awakenings:25
WASO: 69.5
REM periods:3 REM latency 66
Sleep stage percents: N1 11%, N2 60%, N3 14%, REM 15%
AHI 1.9
Arousal index 14.8
O2 desat index: 2.9
O2 sats: mean 91.7, Min 86
Heart rate: mean 58.7, max 148.5, min 19.3
ETCO2: mean 33.6, max 40.6

One final note. My son's APAP machine shows that his nightly AHI averages out to about 5. My son slept on his side for the most of the night during the study so I suspect the AHI was lower than a typical night when he spends more time sleeping on his back.

[dogsarelife]

If I remember correctly, there was someone named Robysue who suffered with aerophagia and got switched to bilevel at even lower pressures than your son. Perhaps if you search for their name and through their posts, you can find more about how they were able to convince the treatment team that a bilevel was a necessity? Apologies I cannot find the specific posts.

Also did the sleep study show periodic leg movements (PLMs) per hour? Member Kteague wrote some posts about PLMs that were helpful for me, and about things like checking ferritin levels before starting drugs. Her video of her sleep dancing shows you an exaggerated case of how much PLMs can disturb sleep.

I hope someone with more expertise might weigh in, and I feel for you and your son as you work through this issue.

ETA - sorry I just realized this is an old post! Hopefully you found help!

[colomom]

Thanks Dogsarelife, great suggestions. I’ll Search for those threads.
I don’t have the numbers in front of me but the sleep study notes said there was a high number of PLMs. My son has had 4 sleep studies in less than a 2 year time span. In previous sleep studies he had some PLMs, but until this latest study they hadn’t quite reached the threshold to be considered abnormal. Interesting you mention ferritin, my son’s had been low but recent labs have shown that we have been able to get it back into normal range. PLMs is definitely something i’ll take a deeper look into, thanks for the suggestion!

My son’s doctor decided to try lowering his pressure to 7 and adding supplemental O2. With the changes his AHI has increased a bit, but the aerophagia has improved and inspite of the higher AHI my son feels that he sleeps better with the extra O2 and lower pressure. My son’s doctor wants a full picture of how the changes are impacting my son’s breathing and sleep, so study #5 will be in his future.

[dogsarelife]

Hi Colomom, I hope that things go well with your son's next sleep study. I think the person Robysue in on bilevel at pressure 6 ipap/4 epap based on an old post I found, but they have so many posts on cpaptalk I still cannot find the one where they talk about their whole history unfortunately and how they were switched in the first place.

I also remembered something I wanted to ask - do you know if your son has any neuromuscular issues - scoliosis or anything that makes it harder for him to breathe properly? I realized that I have some and so I changed some settings on my AirCurve that make it easier for me to breathe fully with my scoliosis and also helped me to suffer less from aerophagia, so that's another reason that it would behoove a doctor to prescribe an AirCurve (bilevel from Resmed) if your son is at all in that category of neuromuscular issues.

Best,
DAL

[colomom]

Thanks again DAL!

My son does have a number of health issues. He has asthma, a circadian rhythm disorder, and POTS (dysfunction of the autonomic system). He doesn’t have a diagnosis yet but the doctors think he has some type of connective tissue disorder, likely some type of Ehlers Danlos Syndrome. EDS can cause laxity in airway tissues, sleep apnea is much more prevalent in people with EDS than in the general population.

My son has a great sleep doctor. I think it is likely that my son will end up on a bilevel. I suspect insurance authorization is part of his doctors reasoning for ordering so many sleep studies.

[kteague]

I don’t have the numbers in front of me but the sleep study notes said there was a high number of PLMs. My son has had 4 sleep studies in less than a 2 year time span. In previous sleep studies he had some PLMs, but until this latest study they hadn’t quite reached the threshold to be considered abnormal. Interesting you mention ferritin, my son’s had been low but recent labs have shown that we have been able to get it back into normal range. PLMs is definitely something i’ll take a deeper look into, thanks for the suggestion!

In any upcoming sleep studies, I would hope that CPAP treatment is stabilized and the overnight study is done while using the CPAP at its proven effective settings. That's the only way to really see if the legs are at issue in the current situation. If you do much reading about PLMD you'll find that the ferritin level for those with limb movement issues is generally recommended to be up around 100. This higher recommendation is because the disorder is thought to be due to problems with iron at the blood/brain barrier in the brain. The general population is considered to be normal with a much lower ferritin level. Being in the normal range may not be enough in this case. If it has not already been done, tests for all those things that support nerve and muscle function could be tested, things like B Vitamins, Vitamin D, and Magnesium. Another thing to ask is if there are any medications being taken that could actually be causing limb movements. If there is any discussion from the doctor about treating limb movements, please take time to do a lot of reading and educate yourself before initiating pharmaceutical treatment. EDIT: I am admittedly beyond biased against casual use of meds, so take that last statement with a grain of salt. Not meant to suggest you should go against doctor's advice. Just know too many of us that have been bit in the hiney accepting treatments that proved to be unwisely prescribed.

[colomom]

Thanks for the input kteague!
It’s great to learn about the ferritin, his latest lab showed he was at 49 so if 100 is ideal adding iron might help! His vitamin D is low, he’s been taking a D supplement for about a year. I’ll ask his doc to test his magnesium and b vitamins, I don’t think they’ve ever tested those.
Great advice to stabilize CPAP treatment before doing anything about the PLMs, fortunately that is the approach my son’s doctor is taking.

[katestyles]

Thanks again DAL!

My son does have a number of health issues. He has asthma, a circadian rhythm disorder, and POTS (dysfunction of the autonomic system). He doesn’t have a diagnosis yet but the doctors think he has some type of connective tissue disorder, likely some type of Ehlers Danlos Syndrome. EDS can cause laxity in airway tissues, sleep apnea is much more prevalent in people with EDS than in the general population.

My son has a great sleep doctor. I think it is likely that my son will end up on a bilevel. I suspect insurance authorization is part of his doctors reasoning for ordering so many sleep studies.

I was not aware of that nugget about EDS - There is some evidence that my son has this, and he may have got it from me! That might explain a lot!

[bwexler]

How old is your son? I haven't noticed that information.
I believe in checking vitamin D level regularly and maintaining a level well above 50 rather than the level of 30 recommended by the medical profession.
Not knowing his age or size I am reluctant to suggest dosage for any supplements, but recommend checking vitamin B12 levels as well.

Why isn't your son using the auto mode on his PAP machine?

Also Robysue spends more time on ApneaBoard than here. I think she is their equivalent of Pugsy.

I know more questions than answers, but I don't want to offer suggestions with no basis to work from.

[zonker]

Also Robysue spends more time on ApneaBoard than here. I think she is their equivalent of Pugsy.

i did not know this! i sure miss her around here. maybe i should log on there, just to read what she writes.

[colomom]

I was not aware of that nugget about EDS - There is some evidence that my son has this, and he may have got it from me! That might explain a lot!

If my son has EDS he likely inherited it from me as well. I'm trying to get my son in with a geneticist to be accessed, but they book years out. Good luck figuring things out for you and your son!

Here is an article on EDS and sleep apnea:
https://www.verywellhealth.com/ehlers-d ... ea-4129568

[colomom]

How old is your son? I haven't noticed that information.
I believe in checking vitamin D level regularly and maintaining a level well above 50 rather than the level of 30 recommended by the medical profession.
Not knowing his age or size I am reluctant to suggest dosage for any supplements, but recommend checking vitamin B12 levels as well.

Why isn't your son using the auto mode on his PAP machine?

Also Robysue spends more time on ApneaBoard than here. I think she is their equivalent of Pugsy.

I know more questions than answers, but I don't want to offer suggestions with no basis to work from.

My son is a very tall (6'6") 17 year old. When my son's doctor prescribed his machine she specified in the prescription that he receive an APAP, but his doctor doesn't want him to use the auto mode. I believe my sons low oxygen levels and the possibility that fluctuating pressures can cause arousals are the reasons his doctor doesn't want the auto mode enabled.

[katestyles]

How old is your son? I haven't noticed that information.
I believe in checking vitamin D level regularly and maintaining a level well above 50 rather than the level of 30 recommended by the medical profession.
Not knowing his age or size I am reluctant to suggest dosage for any supplements, but recommend checking vitamin B12 levels as well.

Why isn't your son using the auto mode on his PAP machine?

Also Robysue spends more time on ApneaBoard than here. I think she is their equivalent of Pugsy.

I know more questions than answers, but I don't want to offer suggestions with no basis to work from.

My son is a very tall (6'6") 17 year old. When my son's doctor prescribed his machine she specified in the prescription that he receive an APAP, but his doctor doesn't want him to use the auto mode. I believe my sons low oxygen levels and the possibility that fluctuating pressures can cause arousals are the reasons his doctor doesn't want the auto mode enabled.

Prescribing the auto also gives the doctor options in the future that are not possible with a fixed CPAP machine.

[bwexler]

I am not aware of all of your sons medical issues. However, I also have an issue with low O2 sats. I use nocturnal oxygen. Since my original diagnosis I have always used auto mode, first on an APAP and now on the more advanced ASV machine.
I would certainly look into auto mode even if it starts in a narrow range of perhaps 7-11. I also recommend getting Oscar to monitor your sons results.

[colomom]

I am not aware of all of your sons medical issues. However, I also have an issue with low O2 sats. I use nocturnal oxygen. Since my original diagnosis I have always used auto mode, first on an APAP and now on the more advanced ASV machine.
I would certainly look into auto mode even if it starts in a narrow range of perhaps 7-11. I also recommend getting Oscar to monitor your sons results.

Thanks for the input Bwexler!
My son had some pretty nasty aerophagia. The hope was that by the adding the supplemental O2 we could maintain oxygenation but keep his pressure down at 7 to resolve the aerophagia. I would worry that if I enabled auto with a higher max pressure that the aerophagia would come back. It's a problem with no easy answer; lower pressure means relief from the aerophagia but a higher AHI. I also don't want to change anything because I'm hoping to make a good argument to move my son to a Bilevel machine. He's facing a lifetime of some type of PAP treatment, if a different type of machine could make that treatment more comfortable I want my son to have it. The way the insurance makes you do all these tests and fail at treatments before allowing you the treatment that would benefit you most is ridiculous, but I'll jump thru all their hoops because when my son is out on his own i don't want him to have to go out of pocket for anything. I have Sleepyhead, here is a typical night since we lowered his pressure to 7.
As I said my son's doc is planning another sleep study. I'm certain his doc won't be satisfied with his current AHI.