Desperate Mum to son with UARS seeking advice

[BunnyMummy]

Ahh yes I was going to message you today, didn't realise you would get the data until I told you, but assume you get a notification when new data is shared.

Ok several things....I tried the cpap 7 for one night but it made no difference, will try 8 tonight.

The gaps in data are where I refill the humidifier tank as it only lasts 10 hours.

There are still other parts of data missing, for example yesterday he went to sleep 5am and woke about 7pm, but data only shows from noon.

The leaks have reduced a bit from a few days ago where large leak was up to over 50%! The mask has additional velcro I stitched on as it wasn't holding well, that stitching had become slightly loose and I wonder if it was pulling under pressure. Since I restitched it the leaks have got better, but still significant and I'm not sure why. He had a new cushion a few days ago so it isn't that. He has started sleeping in this strange position on his side with head facing up, hard to explain and looks really uncomfortable! I wonder if the mask is leaking as his jaw falls down but I can't persuade him to use a collar, and it is a large enough cushion, a medium, he is between small and medium. He doesn't have that problem when lying on his back. Ironically yesterday there was a large large leak period where he slept right through it and his breathing looked good and even and he slept for a while. This makes me think the pressure in mask was less, hence him sleeping better. 

The problem with the data is the NHS won't look at Oscar data so unless they do a psg they can't see flow rate. They will now have that from the psg he had. I can ask them to look at the sd card when we go if we have any trouble getting bilevel. I could tell from his 'you are looking too much into the specifics, the numbers / data is all good', that he didn't like me looking at it.

I haven't tried to get referred to a pulmonologist yet purely because I know the GP will say 'wait and see what the sleep consultant says when results come back.' From experience that is what they say when waiting on results. The consultant will probably write to GP seeking a pulmonology referral, and if he doesn't I can ask myself after we have seen him. 

Thanks again for looking at the data, will try 8 today epr 3 no ramp see how he gets on. The sleep tech put the ramp on when he had his psg :/

[BunnyMummy]

He hasn't had any sweating since we turned the minimum to 7. except for the night on hospital when he was back to 4-15. He does have loose cotton blankets instead of duvets now, as he really hates the sweating, but I think it is due to breathing and heart rate not bedding, but hard to tell as we changed both at a similar time.

I read that UARS rarley gives desats, but his home test showed desats....

Consultant wrote the following about examination. ''Mild retrognathia, class II, Division I Occlusion, with poor alignment of the dentition. Mallampti score of 2, large oral cavity. It is difficult to visualise the post pharyngeal wall due to an active gag reflex and he has 3-4mm jaw subluxation.''

[slowriter]

I read that UARS rarley gives desats, but his home test showed desats....

This isn't really true. It's just the desats aren't as large in magnitude as with OSA.

[Geer1]

I just happened to notice the data was in there, I am doing something similar with my grandfather so look in there every once in a while.

Resmed machine starts its day at noon. 5-12 shows up on the 14th, and 12-7 on the 15th.

I now see the day you tried CPAP mode, it looks like the switch was made half way which is why I missed it. That night just looks like a bad night regardless of the setting, the machine was turned off and on 9 times and he barely ever even got any decent sleep by the looks of things. I also see you increased ramp start pressure up to 6 the next day, this made an obvious improvement but it will be even better if you turn ramp off as it will give a bit more EPR.

CPAP mode isn't going to fix him overnight and it isn't going to fix him at all because this machine isn't capable of doing so. You might see some minor improvement on CPAP mode and that improvement is going to have to be determined over a week or more as it will be hard to tell considering all the other things the influence how he sleeps/feels. I see no signs of higher pressure helping him though and having the pressures fluctuating around isn't doing anything except making it a bit harder to breath out and possibly disturbing his sleep.

The consultant doesn't need to look at OSCAR data and this isn't OSCAR data it is Resmed data on the SD card that OSCAR allows us to see. They should have software to view this data but they don't usually use it unless AHI is bad and they want to get an idea of why, in your case they likely just look at AHI #'s remotely and have assumed everything is fine... Just take a print out of the couple issues and tell them that they don't have to take your word for it and that the issue is clear as day if they look at the SD card data, if possible wait for them to do so then watch the look on their face change... 

I wouldn't wait on a pulmonologist. These guys like to work in their own little bubbles and the only way you sometimes get to see the person you need to see is by fighting to do so. The pulmonologist appointment is as much/more about the asthma and potential other lung issues as it is the sleep issue and this consultant isn't thinking about that stuff especially if you haven't mentioned it(sounded like you at least haven't mentioned that it has gotten noticeably worse). The nurse you deal with about the asthma might be a better route to take to get a pulmonologist appointment through if you explain the issues with CPAP and that you are worried that you believe it is because of how bad his asthma/breathing is now. That test you mentioned is actually a pulmonary function test and it just means that he is having trouble breathing and of course it is going to affect his sleep. If you are going to try to deal primarily through the sleep consultant this is actually what you tell him, that your son has reduced pulmonary function and that it is currently believed to be due to asthma but that you would like to get a pulmonologist involved to make sure there isn't more than that.

Edit: The likely reason for the desats is this same reduced pulmonary function.

[BunnyMummy]

What I don't understand is why the reduced lung function wouldn't affect his breathing during the day. Until a few weeks ago he hasn't complained of feeling breathless in the day, so this has been going on months, we have had the occasional day out been for walks, he has used exercise equipment in local park and not been out of breath. That has only happened the last few weeks. I'm not questioning what you say, btw, just don't understand.

Sleep consultant knows he has asthma, he took a note of it and what inhalers he has. He doesn't know it is not well treated because we didn't know ourselves until a few days ago. He was overdue an asthma check but with his fatigue and sleep rotation it's been so hard to make appointments as they need to be booked up in advance and there is a couple of week wait always. He could do with seeing the dermatologist and dentist too but again same problem. Sleep has become the priority so it's taken all efforts to get him to the hospital for that. 

As the sleep guy is so obsessive about his rotating sleep pattern and believes the basic data he has he fobs me off. I took some print outs last time and he said 'oh that's rem sleep' when I pointed out him being awoken repeatedly. Ok I didn't mention the hyperventilation as I wasn't aware of it at the time and not seen him yet since. It wasn't rem sleep it only lasted a few breaths and was an awakening. I find it hard to be pushy with these people, I managed to be a bit firmer last time which is how we got the psg to start with.

He has written to my sons gp saying mental health and chronic fatigue syndrome should be evaluated, so maybe he will write saying lung issues should be looked into? This guy is an anesthetist as well, he should have some basic knowledge of other branches of medicine, not to treat other conditions but at least to be able to say, 'there is something else going on here'.... I hope!

[BunnyMummy]

We always take the machine in so we will have sd card, I will make a note of points to raise before the appt which isn't long now (28th) and try to be more determined. I'm going to record the conversation too.
He started to get fatigued and need more sleep just before his asthma check in 2018, at that check his peak flow was greater than it is now and there were no concerns about it affecting his overall health by nurse at the time. He upped his inhalers but sleep fragmentation and fatigue carried on. He dropped the brown preventer inhaler down again to once a day in Spring 2019 as he wasn't needing the blue reliever. Sadly asthma hasn't been checked between then and now as it is only usually once a year.

[Geer1]

First off your son does have trouble breathing during the day, that is why he has an inhaler and you see a nurse about this. Second, we only use a fraction of our breathing capability at night and our muscles etc do all sorts of weird things. COPD is a similar breathing example and although it provides breathing issues during the day the effects at night are amplified especially if there are any other comorbid sleep disordered breathing issues like restricted airways which could be the case in your son. The reason I believe there is more at play than just a basic restricted airway is that your sons results are not seen in other patients with the same issues. Sleeprider who has probably seen 1000's of charts mentioned that he hasn't seen this before. There are some signs of similarity to UARS but something is amplifying the effects and making this into a serious issue rather than just some interrupted sleep. I believe it is due to trouble breathing out against CPAP pressure because of reduced pulmonary function which you already have a test confirming. A pulmonoligst is the type of doctor you need to determine if that is correct, general doctors, sleep consultants etc will never get you what you need to know to confirm or rule this out. 

I don't doubt the rotating sleep pattern is an issue but it can't be solved right now because your son doesn't get good enough sleep to be able to go 12+ hours without it. Maybe there is something to be said about maintaining a nightly sleep schedule and limiting afternoon naps to maintain this but it isn't going to fix the underlying problem... The consultant doesn't know or believe that there is an underlying problem though which is why he focuses on things like this though.

The easiest way to deal with the consultant on this issue is to wait for the PSG results if that is possible, I don't know how long that is supposed to take though. If he is worth his salt he should also be able to tell there is an issue just from reviewing the sd card data, like I say the issues are obvious he or someone just needs to look at them. 

I've become fed up with doctors and take a very direct focus with them now as my first one was saying similar stuff. Anxiety, maybe psychosomatic, maybe chronic fatigue blah blah blah... He refused to send me to an ENT because what he was trying wasn't showing improvement so he didn't believe it could be a real issue. I gave up on him and went to a different doctor who set up an appointment with an ENT and now I have 3 diagnosis. Currently on medication for one of them and surgery is scheduled for another. A lot of the times these guys just don't know all the possible issues (that is why there are so many specialists) and especially if they don't believe or give up on you then you don't get anywhere.

[BunnyMummy]

So our appointment was yesterday. Disappointing as usual with constant dismissiveness from consultant. Short story is he says the cpap is correcting all breathing dysfunction, no sign of hyperventilation (!) refuses to look at my data as I am over analysing every tiny thing, even went so far as to hint I am a part of the issue.
I'm so angry. BUT after a huge effort from me he has agreed to bi level trial. He referred to it as NIV, and when I asked, patronisingly said it was the same thing as bi-level.. we have to wait a month to get the trial and it it a 3 hour appointment with a special clinician so I assume it is one up from bi-level, ASV? 
He is referring him to a sleep neurologist at Guy's hospital in London (we are in UK) as he believes it is neurological. I think he is wrong, but what do I know?! If it respiratory / lungs then hopefully the NIV would help. Just another month which is frustrating. And I had to REALLY push for that. I am sending a copy of the recording to GEER1 as he has been so helpful. I don't have the study myself but will get a copy of it, I can't do that until next week. Either Oscar data is wrong or he is seriously imcompetent, he admits sleep is extremely fragmented, but refuses to believe it is anything to do with breathing.

[Geer1]

He probably isn't even looking at flow data, maybe doesn't even know how to. If all he looks at is AHI(like so many do) then he will never understand that there is a problem or what it is.

So the sleep study results were in? Definitely get a copy of them and when you do make sure you get the full report (graphs, tables, doctors recommendations etc), too often they will only try to give out a summary page. If the clinic won't give it to you then the ordering physician should have it. Once you get a copy post a redacted version(remove any personal information) on here.

NIV is different than bi-level from what I understand, if the consultant doesn't believe bi-level is required then jumping straight to NIV makes me believe this consultant is outside of his comfort/operating zone. I really think you need to be seeing a good sleep oriented pulmonologist, here in Canada they have to be involved for all bi-level cases.

Take anything and everything they will give you. Meet the specialist for NIV, sleep neurologist etc. I just know there is something not right, I am guessing trouble breathing against pressure due to asthma etc but there could be more than that and any extra sleep specialist you can get involved the better.

If you want to try something sooner you could consider buying a used bilevel machine (that way you don't need prescription). Resmed Aircurve 10 Vauto would be the preferred unit but almost any model would probably help diagnose a bit farther, we just can't do any more tests etc on this basic APAP machine. If you decide to go this route and are unsure about a machine that you find then post the model on here and someone can probably let you know if it is worth considering.

[BunnyMummy]

I have a letter saying he has aponea so could use that to buy one, but we can't afford it at the moment. Presumably NIV is preferable to bi level and there is no disadvantage over having that rather than bi level? Oh I know he is out of his comfort zone, when I suggest hyperventilation he just back tracks to sleep cycling. But the recommendations at the end of the study didn't mention him struggling to breathe out and I was sure they would