Desperate Mum to son with UARS seeking advice

[Geer1]

So you believe he is awake all those times where there is hyperventilation? That would mean he is waking up extremely often and spending half the night awake.

Is the sweating only at night or does he have sweating issues during the day as well? Being in that panic mode would definitely cause sweating, it did when my mask wasn't venting properly and I was only in that state for about a minute let alone how long your son is in periods like this.

[DeepBreathing]

DeepBreathing, wow that has shown up so many more events....here are some pics from various pressures at the setting you suggested....

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one more

Yes, this method allows you to see the "almost apneas" and "almost hypopneas" that would otherwise sneak through undetected. A clinician would probably poopoo these, saying they're not relevant as they don't meet the magical threshold of 10 seconds, but I think it's important in forming part of the overall picture. He's having a lot more low-quality breathing than the AHI indicates.

Having said that, the big variations in ventilation that we're seeing in his charts still indicate something a bit more fundamental is going on, as discussed by the other members.

[Jeff8356]

I use an eco ball thing for all his stuff so no detergents, and it is line dried in the fresh wind.

Just a thought.....

Line drying laundry in the "fresh wind" is also exposing it to dust, pollen/allergens, and other particulate matter.  With allergies and rhinitis it may be worth reconsidering how you dry his laundry.

[BunnyMummy]

Update : someone cancelled at the last minute so as we are in the wait list he has a psg tonight! Will update when it has happened!
Will ask for blood gases, to look into the hyperventilation, at his exhalation and if he can be tried on a different machine if he still keeps waking up frequently... If he gets to sleep in the first place! Luckily it has fallen just at the time he is due to sleep on early evening so very fortunate.

[Sleeprider]

Good luck with the new test. I hope it offers some insights into the frequent awakenings and respiratory fluctuation. As much as we are focused on respiratory issues, the PSG probably will incorporate EEG which might show if there is brain activity that triggers the events.

[mesenteria]

Yes all pillows and bed has anti allergy covers, I don't wash them that often to be honest, but changed the actual pillowcase and sheets at least once a week, sometimes every other day if he has had night sweats
I use an eco ball thing for all his stuff so no detergents, and it is line dried in the fresh wind.
The room is so small, with bed one side and a few small storage units the other, he doesn't even have room for a wardrobe. I couldn't get on the floor to hoover under bed as the gap is only a little over the width of my body! I do lift the mattress and try and hoover under slats to get to floor. It's used as storage under the bed as well with lots of boxes which makes it even harder. He could do with a bigger room but we can't move sadly. I have considered one of the beds where it lifts up and you can store stuff inside the base.
Dermatology told us not to be too obsessive about dust mites, that you can't eradicate them all, just a good hoover daily.... Not saying I agree with that, just that that's what we were told. He has a dehumidifier in room.
We have holidayed in various places over the years, where there is less clutter / dust / no pets, but sadly it never made any difference to his rhinitis or ezcema. Ok I guess we were only away a week at a time but all the same...

By any chance, does he sleep with his door closed?  And window?  If the room is as small as you seem to have described, he may be getting too much stale air as the night wears on.

[BunnyMummy]

So the test was last night. He did so well despite all his sensory issues and did sleep. I am disappointed by how it was performed though. The technician (despite being really nice!) couldn't give us any idea of how it went only that his heart rate was up and down all night. She said they have patients on bilevel and v auto as well but try to avoid the latter where possible.
She said the test would have to be scored before we hear anything else. Said machine should be correcting his breathing and consultant is looking for other causes.
He had sensors all over his head, finger oxymeter, leg sensors, abdominal belt, one under his chin, but no nasal canula as he had cpap on. Test was purely observational, so no meddling with pressures or trying a different machine. She said they don't check respiratory rate, and wouldn't do blood gases as consultant hadn't requested them! Despite them telling me on the phone they may do them on the night if you request. 
The cpap was wired into something so I'm hoping they can see the breathing flow rate through that?
So we are still left with him feeling hellish but surely if machine is not picking up enough reras that will show up in the data?
From what I observed, he slept within 10 minutes (he had been awake almost 20 hours by the time they had rigged him up) and slept well for half an hour or so, but with repeated leg jerkings which rustled the waterproof duvet and stopped me sleeping. He didn't seem to wake from it... Periodic limb movement disorder? Then he must have woken in and off in the night a lot as he kept telling me to stop snoring (!) as I was stopping him falling back asleep!
I've seen the jerking before, back in the summer before he was diagnosed, but he was sleeping with a thins sheet so it was easy to observe. I thought it had stopped. But maybe as he has a duvet now I just can't see it. It was only the rustling of this one last night that alerted me to it. I've seen some full body jerks and know we all those but as you fall into sleep, his seem to occur mid sleep. 
Guess we just have to wait now and see what they come up with. But presumably if he does have a bi level or v auto he will need another stay to titrate it?

[Geer1]

That all sounds fairly normal and is a big step in the right direction, now we wait for the report which will hopefully tell a story. Don't worry even though they didn't try other machines they should have lots of information to know if it is required.

The test will also tell if the jerks/movements are a part of the problem.

I assume it was their own cpap machine not yours? If yours it would be interesting to see the OSCAR data to see how he slept.

[BunnyMummy]

No, it was his! Will get the data off and have a look. It was reset back from 7-15 to 4-15 as that is what he started with. The only problem I can think is I won't get a full night as he fell asleep 10.30 and data only seems to show now from 12.00, it didn't do that before but has in the last few weeks I've been importing. Technician had not heard of Oscar, how can someone be a technician 12 years and not have?!

[Geer1]

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...