08-30-2013, 06:39 AM
(This post was last modified: 08-30-2013, 06:40 AM by shifco.)
Thank you Tez62, bwexler, jgjones, Ron and others.
I think you are all exactly right. Sleep study not accurate. Machine accurate, but not using enough pressure. The video explains OA and on her SleepyHead stats I see exactly that; periods of 8 or 10 seconds of no flow, and then a startle, gasp for air, and crazy flow. It really does fit. I called the sleep tech yesterday to inquire about the AUTO PAP functionality and maybe get a range: 4-6. Of course, no call back. We plan on switching doctors. No help. New doctor appointment 9/9 with who knows maybe a titration test last September.
Ron, The machine is a: Phillips Respoironics REMstar Auto A-Flex System One. We made the adjustment to 5.0 already, thanks to video instruction.
A question my wife has for all of you (I am the father): If the CPAP is doing its job, what would we expect the readout to look like? I said low low AHI with minimal interruptions..... but my wife is wondering for you guys/gals, when you use your CPAP each night, do you almost always feel it works for you?? Well rested, low AHI, energized, and know it worked...
Calling the doctor again today as I believe the Auto A-Flex can indeed have a range. In fact, I think I saw the settings in the video when I changed to 5.0. Ron, I think I am good with the Setup menu should docs give go ahead to change (I am very technical). My wife and I appreciate all the help!
Ok, you have the actual auto-CPAP machine. Right now, it's probably set in CPAP mode, but setting it to auto-range is as simple as it was changing the pressure setting. You will find a "mode" setting that can be changed to APAP. [ I'm going by memory, so the specific words might be wrong, but the concept is correct. ] Once set to APAP, you will now see a minimum and maximum pressure setting. When first turned on, the machine will provide the minimum pressure setting and, during therapy, will never exceed the maximum pressure setting. You will also see that the C-Flex setting got renamed to the A-Flex setting. It's the same thing with a different name: the reduction in pressure when an exhale is detected. This is mainly a comfort issue, so I'd recommend setting it to its maximum value of 3. Note that, because of *-Flex, the machine might provide a pressure lower than the minimum pressure setting during exhale, although that pressure will never be lower than 4.
By the way, if you look at various posts in this forum, you might find places where I recommend setting the upper pressure limit to 20 on the theory that if the machine thinks the pressure is required, why not allow it to provide it. I'm sure you've figured this out for yourself, but I will say explicitly DO NOT FOLLOW THIS RECOMMENDATION for you daughter, at least not in the short-to-medium term future. There are two issues: one is simply getting used to the treatment and the pressure, which would be even more complicated for a 4-year-old. The second is that, while higher pressures are essentially comfort and leak-control issues for adults, I wouldn't want to speculate how well a child would tolerate them. Until a doctor explicitly approves a particular pressure, tread very slowly with higher pressures.
By the way, just to give you some context about these pressures. They are measured in cmH2O, which is the height difference a column of water would be raised by that pressure. So, for example, take a tall glass of water and put a straw into the water with the end 7 cm (about 2.75 inches) below water level. Now blow bubbles through the straw. That takes 7 cmH2O of pressure.
When CPAP works properly, you will see a low AHI value, since most (if not all) of the obstructive apneas will be prevented by the positive airway pressure. How you feel tends to depend on the individual person and the length of time spent in CPAP therapy. Personally, even though I had only two hours of CPAP sleep during my sleep study, the tiredness I felt in the morning was qualitatively different than what I had been feeling. I'm not sure I can describe it well, but previously I felt constantly tired, but that morning I felt like I just didn't have enough sleep. I did feel a mood improvement pretty soon after starting CPAP therapy, and was quite surprised by how depressed I had been.
Prior to CPAP therapy, falling asleep at my desk at work in the afternoon was not uncommon. Now, it would be completely unheard-of.
That's my personal experience. Sadly, there are others for whom the data indicates that the CPAP therapy is working well that still feel tired for the first weeks of usage.
Wow...CPAP with a 4 yr old...
Looks like you've tried everything.
I can only suggest the stair step method. (no harm or hazard here)
Start with low=6, high=8 and let her run with that for a week or two.
The higher pressure will give her a higher flow rate and less of a "stuffy" situation so she'll be more comfortable.
Check the stats during this time and keep up with the clean mask seal & clean face right before bed.
This will insure a better seal during the night.
If your AHI numbers don't drop then try the small back pack loaded with tennis balls so she has to sleep on one side or the other.
Only change one variable at a time so you can have a clear cause and effect situation.
Maybe this technique will clear things up.
If it improves but still needs to get below AHI of 5 then bump the pressure up 1cm on the high limit and run for another week or two while keeping every thing else the same. (chances are she will not even know the difference and just adapt to the elevated pressure)
Hope this helps.
"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton
(08-30-2013, 06:39 AM)shifco Wrote: A question my wife has for all of you (I am the father): If the CPAP is doing its job, what would we expect the readout to look like? I said low low AHI with minimal interruptions..... but my wife is wondering for you guys/gals, when you use your CPAP each night, do you almost always feel it works for you?? Well rested, low AHI, energized, and know it worked...
This is a difficult one to answer, basically the symptoms that she had pre being diagnosed should start to lift over time, for maost of us it takes about 3 months but veryone is different, so yes she should feel more rested and energised. It will be interesting to see how a 4 year old goes as for most of us we have had sleep apnea for a fair amount of our lives and in my case have had it since I was a baby but only diagnosed 2 years ago when I was 48. Normally when people start treatment they get an instant burst of energy as they have been so sleep and oxygen deprived for so long, then it tapers off for a while, then over the coming months they start to feel the real effects. As your daughter hasnt had it that long she may feel the effects much sooner. The most important thing is that ovet time she will need to realise that this is a life long illness but has a gold standard treatment, her CPAP. There is no cure for sleep apnea but the treatment is far better than the associated illness's it can cause like, heart attack, stroke, depression, etc and they now believe it can cause cancer.
How is she actually going with the oncept of wearing a mask?
You need to make it as comfortable as possible for her so she will want to use it.
It is a bit easier for us oldies as we know why we have to use it and for most of us, we can no longer sleep without it
I treat my CPAP like an extention of my body and have even named her. She keeps me alive and doesn't ask for much except a bit of water and electricity, what else could I ask for.
09-01-2013, 01:14 AM
(This post was last modified: 09-01-2013, 01:30 AM by vsheline.)
(08-28-2013, 09:38 PM)shifco Wrote: see this image that I progressively zoomed in on ---> i.imgur.com/zrn0zAu.png
The tech only looked at stat numbers, no wave data. They had a printout that they took to the doctor. Doctor concurred the numbers didn't look right. THat is about all the information we got. "Come back in 1 month" for Sleep Study w/ CPAP.
I suggest you adjust the vertical scale on the Flow plot so that the scale is -40 to +40, or perhaps -50 to +50. This will make it much easier to see clearly what is happening.
(08-30-2013, 06:39 AM)shifco Wrote: I called the sleep tech yesterday to inquire about the AUTO PAP functionality and maybe get a range: 4-6. Of course, no call back. We plan on switching doctors. No help. New doctor appointment 9/9 with who knows maybe a titration test last September.
I suggest you request an ASV titration, not just a standard APAP titration.
Your daughter may need an Adaptive Servo Ventilator machine such as the "BiPAP autoSV Advanced — System One". An ASV machine would not merely adjust the pressure automatically so as to prevent obstructive apneas, it would also step in to keep her ventilated when she is having central events (making no effort to breath).
It is very clear that 4 cmH2O is too low of a pressure to adequately prevent your daughter's obstructive apneas.
However, as shown in her sleep study, your daughter is prone to having central apneas even without PAP treatment. With some patients, raising the pressure enough to treat their OA events tends to strongly increase the number of central apneas. Not that central apneas are necessarily worse than obstructive events, but (like obstructive events) central apneas can cause arousals which prevent deep restorative sleep.
During central apneas, your present AutoPAP machine will do nothing except to wait for the central apnea to end and record data showing it occurred.
That said, I would consider raising the pressure weekly in steps of 1 cmH2O and watching the data for improvement or problems. I would monitor the duration of each OA event and each CA event, and would consider a short CA event as less concerning than a long OA event.
Our pressure needs change nightly, even hourly, depending on many things, including diet, nervousness, sleep position (on side, on back, head up, head down, one pillow, two pillows, no pillow), what "stage" of sleep we are in, etc.
I think the reason the AHI changed with type of mask (nasal pillows versus full face) was (1) either your daughter tended to sleep in a different position when wearing the full face mask, and/or (2) the full face mask tended to pull her jaw back, which tended to push her tongue back, which tended to increase the number of obstructive events.
Even though during her sleep study your daughter showed slightly more obstructive apneas when on her side than when on her back, usually obstructive apneas occur much more easily when sleeping on our back. In other words, just because your daughter for a short time (one night) may have had fewer obstructive apneas on her back does not mean this will usually be the case for her, and Shatzi's suggestion of doing something to keep her from rolling onto her back is worth a try. Personally, I wear a snug teeshirt to bed with a tennis ball in a pocket sewn right between my shoulder blades.
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
Thanks everyone. Two doctor appointments today. One was an MRI ordered by our pediatrician. The other, our new sleep doctor. MRI thankful came back normal. One concern we and our pediatrician had was Arnold–Chiari malformation
-- which can cause sleep apnea. Luckily we have a normal little girl in terms of brain/brainstem MRI.
The new plan (per new doctor approval) is for elevated pressure - a range of 5.0-9.0. She has been on 4.5-7.0. I'm thinking she will adjust well. Taz, as for "concept of wearing a mask
", no issues at all. One night, she even asked if it was on. Hopefully next seven days with elevated pressure goes well and we see a difference. Hopefully less OSA and the pressure doesn't cause a spike in Central Apneas.
Vaughn, we spoke with our old sleep center on an "ASV titration" test. It wasn't a very clear conversation, but if we keep our scheduled 24th study-- which is a "CPAP titration", we may eventually get a ASV titration test later that night if deemed necessary!?!??. All comes down to insurance and going through the steps apparently.
For a summary of the last 17 days in Sleepyhead, see: http://i.imgur.com/6MM3TVt.png
Hopefully next 7-10 are better....
09-09-2013, 06:59 PM
(This post was last modified: 09-09-2013, 07:02 PM by Tez62.)
Shifco, the charts seem to be showing a decrease which is good, I think the higher pressures should help, it will be interesting to see how it goes. The other thing you have to remember is it takes time for our bodies to adjust to CPAP and sometimes can take weeks or months. I would be very surprised if her centrals increased, that normally only happens to some people on very high pressures like 20. It's good she has adopted to CPAP so well. I don't think Phillips have them but Resmed have 'skins' that you can put around the CPAP in things like favourite football team etc. Looking forward to seeing her results over the next few weeks, good luck.
(08-27-2013, 09:23 PM)shifco Wrote: Thank you. Behavior has been better and better with full mask. I realize we are dealing with not enough data/time yet. Before the CPAP, she was a walking zombie during the day, always tired, behavior problems, etc.. In the end, I hope this helps another faily. We plan to get "Sleep, interrupted" by Steven Park (book about sleep disorders) very soon.
The image is http:// i.imgur.com/2DIUKya.png but remove the space between the / and the first i. I can't post links just yet. Or maybe try just: i.imgur.com/2DIUKya.png
Thank you for your insight. Will hope to update as weeks and months go by.
You can screen print the data from sleepyhead and put it in paint and save it to your desktop. Then you can attach it to a post so the data can be seen. Sure hope this helps. This is how I did it. You may be able to put the data in something other than paint but this is how I did it (I have windows 8)
I bought Dr Parks book, he has a website and used to have webinars every week on Sleep Apnea but it has dropped off as he is very busy building a new clinic in New York. He does sell his book on his website or you can get it over the net. I have learnt a heap from his webinars, it is a pity they dropped off.
(08-29-2013, 05:45 AM)jgjones1972 Wrote: I'm not a doctor, but the charts sure seem to support the data...I don't think there is any way a malfunctioning machine could fabricate an obstruction/resistance pattern like this. The sleep study seems to be the odd one out here.
Here is a video that I think is particularly helpful in understanding what to look for.
I wonder why the respiratory person didn't load the SD card into some software that they have and look at all the data themselves? Am I missing something? If they had done that, then they could have seen for themselves if the data was correct or suspect!! I realize you took data to them but if they had doubts, they should have checked it with their own software!!
Given the circumstances, I would probably raise the pressure to 5cmH2O and leave it there for 2 weeks to see what happens with AHI.
Is the machine she is using an Auto?