Desperate Mum to son with UARS seeking advice

[BunnyMummy]

Annoyingly it looks like he had a better night. The first hour he appears to have slept well with even breaths ( but the leg jerking was happening then), his respitory rate isn't as high as it has been previously, neither are the tidal volume or minute vent. He only slept 7 1/2 hours though and usually has 11/12 sometimes 14/15 hours. I've not seen him manage a full hour looking good from what I have seen on Oscar before, but I haven't srutinized every day so will have a look back at previous days. Maybe as he was so exhausted from 20 hours awake? They didn't adjust any pressure from what I can see. Not sure I can post pics so here are they stats...

Channel
Min
Med
95%
Max
Pressure
4.02
6.46
10.00
11.34
EPAP
4.02
5.66
8.00
8.40
Minute Vent.
2.63
6.88
13.63
18.72
Resp. Rate
5.00
15.80
20.40
26.80
Flow Limit.
0.00
0.00
0.07
0.22
Leak Rate
0.00
3.60
8.40
10.80
Snore
0.00
0.00
0.00
0.00
Insp. Time
0.40
1.58
1.98
3.22
Exp. Time
0.36
2.20
2.84
3.97
Tidal Volume
100.00
440.00
820.00
1160.00

[BunnyMummy]

Is the end time also off? It could just be the time setting needs to be adjusted.

Most technicians, sleep therapists etc will say they haven't heard of OSCAR or will say they don't know how to read it, that has been my experience so far. Technicians, sleep therapists etc aren't supposed to interpret anything so they always play dumb. They just collect the data, now it will be scored then reviewed by a sleep doctor who will make the comments/recommendations in the report.

Glad to hear we get to see your OSCAR data as it will be good to see if he was having those hyperventilation like periods and if so what the report says about it. I still question some of my home sleep study results and wish I had the data to be able to see how much of it I actually believe is real.

You will find that the sleep industry treats things very different than what is talked about online. On these forums lots are quick to propose bilevel but most of the sleep industry claims you only need one if you have an underlying health issue as that is what they are taught. I think that view is slowly changing due to findings by doctors like Krakow but it will take years/decades to get mainstream...

The end time is fine, but the start tim worked this time too...

[Geer1]

His minute vent didn't seem as bad but will wait to see graph to comment further.

Have you tried using different bedding and laundry detergent? Perhaps he has an allergy or sensitivity to one or the other that is affecting both his skin and breathing. I have an aunt that is very sensitive to different soaps etc and it took them a long time to find ones that don't affect her.

[Geer1]

For others following this I offered to review OSCAR data for BunnyMummy and I noticed a few things.

Hyperventilation periods occur every day including every time he puts on the mask. My thoughts were that is either caused by anxiety or trouble breathing out against the pressure (I am guessing the later).

During periods of "normal" sleep breathing he has flow limitations and make up breaths, these often cause arousals that lead to the hyperventilation periods.

As I mentioned to BunnyMummy I think it is kind of like UARS but probably related to breathing/lung issues, potentially related to the allergy/asthma issues.

Recommendations similar to what has already been proposed. Probably should try bilevel to deal with flow limitations and make exhalation easier, should see a pulmonologist to investigate potential breathing/lung issues and I also proposed a couple tests to try and understand how much anxiety plays a role and whether or not APAP is helping or making things worse. As well as ideas to try and maybe make some changes to try and minimize allergies since his hyperventilations were lower amplitude during the study then most nights at home and it made me wonder if that was due to different location (could just be coincidence though).

Data from the night of the PSG was good and showed all of these regular issues so the sleep study results will hopefully get doctors pointed in the right direction and help line up some better treatment.

[Geer1]

Here are some examples of the flow limited/restricted breathes prior to arousal/hyperventilation. These are just a few examples from the night of the sleep study.

[BunnyMummy]

Just a follow up here... We are still waiting for our appointment on 28/02, last time I rang the hospital my sons test had yet to be scored, but he has been put on the cancellation list should any appointments come up before then. We are in the same state of things really. He is now back to sleeping up to 20 hours, this would happen regularly pre cpap but he had stabilised at about 11/12 hours, now it's creeping up longer.

A few nights ago I changed the setting from standard to soft for response. He seems to have had a few longer stretches of uninterrupted sleep, up to 1 1/2 hours a couple of nights. At the weekend I will resend data to Geer1 if he doesn't mind taking another look for me

Anyway, my son had an asthma check up yesterday. His peak flow was 270 and is meant to be 480 for an unasthmatic his height. Last time he was tested (Nov 2017 just as his tiredness had started, but no where near the level it is now) his peak flow was about 370. Nurse said his asthma was unstable as he is taking blue reliever daily, and can't tell if the breathlessness is from being very unfit due to inactivity, or asthma, but I suspect the latter. He is doubling up his fostair (preventer) but it will take several weeks to improve things.

I wonder if this could be the cause of the ragged flow rate and trouble expiring against the pressure? I am wary of telling consultant this incase it reduces his chances of getting a bi level. 

She wasn't very clued up on what could cause the hyperventilation but seemed shocked at his respiratory rate sometimes peaking at 30. I was hoping she may send him for a chest x ray but as he has never smoked she said copd/emphysema etc very unlikely. Guess we need to just wait for the consultant appointment, I'm just so worried he will fob us off or that the psg hasn't picked much up. I've seen from sample ones and there are recommendations at the bottom, I'm hoping they will recommend bi level and comment on the hyperventilation.

I changed his filter too, it was slightly grey but very feintly, will get hold of the hypoallergenic ones. I have seen round shaped filters people with asthma use on the hose, can anyone advise me of what they are please? 

Thank you all once again!

[Sleeprider]

inline antibacterial filters are rarely used, and can be a problem if not maintained. They are in the warm moist air from the humidifier and and can become colonized. If allergies are a serious problem it is a consideration, but be sure to maintain the filter as recommended. There is a setting on the machine for use of the AB filter.

[Geer1]

Your data from the PSG night showed enough data that it should be clear that they need to proceed with bilevel. You should definitely mention the asthma related breathing issue as that is likely the reason he is having these troubles to begin with and also the reason he needs to be on bilevel. Bilevels are designed for people with pulmonary issues, your sons apap machine is meant for otherwise healthy individuals and his asthma/breathing issue is why he is struggling to breath against the pressure. Mentioning this issue should not slow down bilevel process, it should speed it up.

Have you made any ground on a pulmonologist appointment? I think this is very important and would be pushing for it hard. Nurses, technicians and sleep consultants aren't the right people to be speaking to about this stuff(getting xrays etc). You need a pulmonologist that will know what tests to order and how to proceed both with these chronic worsening asthma issues and this sleep disordered breathing which if I had to guess is just a side effect of the breathing issue. 

I can take a look at data again if you would like. Last time you only included datalog folder so I had to fudge a few things, this time copy all of the sd card files and I will be able to see a bit more data.

[Geer1]

I see you uploaded data and I took a look through things. Everything is looking about the same, one clear change I see though is that his leaks have been increasing over the past month, I am wondering if maybe his mask cushion is getting worn? Here is a picture showing increasing leak rates.

[attachment=19981]

One change I want you to make is to switch the machine to CPAP mode with pressure set at 8 cm, EPR of 3. The reason I believe this should be done is that due to his falsely flagged apneas/hypopneas during his hyperventilating periods and significant flow limitations his pressure bounces all over the place. This pressure bouncing around is not helping as far as I can see.

In this example most of the "apneas" and "hypopneas" occur during these awake hyperventilation periods. These aren't real sleep disordered breathing issues and these cause the machine to increase pressure which just makes the treatment less comfortable for him.

[attachment=19982]

In this example you can see where he is asleep and his breathing is decent, then he starts having some flow limitation and the machine starts increasing pressure to try and address the flow limitation but his breathing continues to get worse as the pressure increases until it eventually falls apart and he wakes up and has a hyperventilation period. It isn't clear if the increasing pressure is what is causing his breathing quality to decline or if his breathing just isn't stable and gets worse for unclear reasons but having the machine set in CPAP mode will help determine if the changing pressure is the issue and if it is then hopefully it will help him sleep a bit better.

[attachment=19983]

I am 100% sure that your son needs bilevel at a minimum and as mentioned before I think there is more at play then just your run of the mill restricted airway issues. This isn't what I would consider UARS but it is manifesting in the same way. The breathing issues cause flow limitations and irregular breathing which is causing arousal due to build up of CO2 levels. High CO2 levels and difficulty breathing out against the CPAP pressure leads to the hyperventilation periods where he is trying to catch his breath. Then the whole process repeats itself over and over in a never ending battle. 

I would push for the sleep study results and I would ask your consultant or whoever to review the SD card data looking specifically at the flow rate data and the periods of hyperventilation and obvious flow limitations/irregular breathing leading to arousals. This issue is so blatantly obvious they should have already acted on it and in a perfect world they should have noticed this days after him starting treatment but instead all they look at is AHI numbers... 

Good luck and keep us posted.

[Geer1]

Oh, two more things.

Google Mallampati Class and let us know what class he is.

Turn off ramp. I didn't think it was on but it looks like it is.