My Son's Low MV Alarm Making Me Nuts

My son has worn a bipap machine for over a 3 years... long story but from where we are now I have a few questions that maybe someone can help us with...

The most important question I have is regarding his "low mv" alarm. I have, after 2 years of almost never sleeping through the night due to this alarm, turned it off. It actually was turned off when they first prescribed the machine but I turned it back on after his first year. The lowest setting for the alarm is 2.0 and some nights he barely ever sets it off and others it goes off every 30 minutes all night long. Typically all I need to do is roll him over and reset the alarm, AKA wake him up a little bit.

His pressures are set around 4/10 with a backup of 16. He typically pulls an mv of around 2.7 and sounds like darth vader. We use an old style mask that almost never leaks and he is big enough now to pull the mask off if it covers his nostrils.

Is turning the low mv alarm off dangerous?[/list]

I don't have any experience with bipaps but several on the forum do.

How old is your son?

[quote="parzoe"]My son has worn a bipap machine for over a 3 years... long story but from where we are now I have a few questions that maybe someone can help us with...

The most important question I have is regarding his "low mv" alarm. I have, after 2 years of almost never sleeping through the night due to this alarm, turned it off. It actually was turned off when they first prescribed the machine but I turned it back on after his first year. The lowest setting for the alarm is 2.0 and some nights he barely ever sets it off and others it goes off every 30 minutes all night long. Typically all I need to do is roll him over and reset the alarm, AKA wake him up a little bit.

His pressures are set around 4/10 with a backup of 16. He typically pulls an mv of around 2.7 and sounds like darth vader. We use an old style mask that almost never leaks and he is big enough now to pull the mask off if it covers his nostrils.

Is turning the low mv alarm off dangerous?[/list]

parzoe, I had one of those machines (the VPAP III ST/A you mentioned in chat the other night) just to try out for a couple of weeks for the heck of it. Didn't need it myself, but wanted to see how "timed" back up rate felt.

According to the blog you have for your son, you got your doctor's blessing to work with your son's RT about adjusting settings yourself. Have you asked the RT if it would be ok to turn off the MV alarm?

If it can even be turned off at all. I don't remember the settings stuff very well. What I was fiddling with mostly, just to see how it felt, was the "timed" back up rate. I don't recall any alarms going off at all during the two weeks I played with the machine, but I would have set all alarms to "off" anyway.

What does your son's RT say about whether it would be ok to turn the MV alarm off? If she's not sure, perhaps ask the doctor if it would be ok to disable that alarm so you can sleep. That has to be extremely hard on you...being waked so much. Like you, I'd want to find out if it's absolutely necessary to have that alarm enabled.

It's ok to post a link to your son's blog in this thread if you wish. Loved seeing the pictures in it from the horseback riding therapy program he's in.

He has always averaged between around 1.4-3.6 throughout the night. Danger is the name of the game... is it dangerous for me to turn the alarm off?

I cannot carry my son forever. I cannot pull his pants up forever. I cannot wipe his butt forever either just as I cannot fix his mask everytime it slips a little.

He has proven over the last couple of days that he can wake up and pull it off if it slips and again, the danger really comes from it moving and obstructing his nostrils. I am going with off for a while.

Wish me luck.

His blog if anyone would like to check it out is child-bipap.blogspot.com I think.

Makes my problems look small in comparison!!!

I read your blog and was humbled by what you are experiencing.

I teach special education and often encounter students with severe disabilities that make me grateful for what I DO have!!

My thoughts are with you.

Thank you for the kind words. We have overcome alot. He is doing very well and we are all sleeping through the night. He has pulled the mask off twice in a week early in the morning with a stuffy nose. We have colds.

His numbers look great. I will be moving to a new state soon and will be getting a new dr. Looking forward to reviewing his machine, settings and habits.

We are proud to be over 98% compliant with the machine and turning the low mv alarm off for me is a big step in trusting him to learn to move the mask if it obscures his nose.

In the three years we have used the machine and the hundreds of times I have gotten up to that alarm he has never "stopped breathing". It is always because the mask is out of wack or he has dropped his mv below 2 for a short while. Hopefully the new machine will have a lower alarm threshold as this is as low as ours will go.

Hi! AI am Jamie's dad and have been having trouble with the low mv alarm periodically going off in the night. This is an ongoing problem that I am certain has to do with the "central" aspects of his sleep apnea. The obstructive aspects of his apnea I feel are diminishing as he has gotten bigger and stronger.

I have recently turned the low mv alarm off as Jamie has proven that if the mask moves over his nostrils he is able to pull it off or readjust it himself but I wonder if the machine he has is the best for him. I have been excited about the idea of a machine that reacts to his mv rate and found this article recently: http://www.sleepreviewmag.com/issues/ar ... -06_03.asp and wonder if this machine: https://www.cpap.com/cpap-machine/bipap ... -cpap.html might be a better fit for Jamie.

Please advise.

parzoe, as I'm sure you know... everything's going to depend on Jamie's doctors knowing exactly what needs treating before deciding what kind of machine stands the best chance of treating Jamie as well as possible.

These are machines I'd be asking his doctors to look into:

Respironics AVAPS
http://bipapavaps.respironics.com/

Respironics BiPAP AutoSV
http://bipapautosv.respironics.com/

ResMed VPAP Adapt SV
http://www.resmed.com/en-us/products/fl ... pt-sv.html

As for which of those machines might do much better for Jamie than the bilevel ST machine he is on now ... well, that would depend, I'd think, on what needs treating. And deciding that (exactly what needs treating) is going to depend upon how accurately his doctors are diagnosing his particular sleep breathing disorder in the first place.

As a famous person once said... "Gotta know what you're trying to treat, before you try to treat it."

Then there's this dilemma... how much do Jamie's doctors know about those new machines, and how much do they truly understand about how different those machines are from each other.

Be sure the doctors have diagnosed Jamie's breathing disorder right in the first place. That they really know what needs treating.

Be sure the doctors understand how those machines are different from each other, and how each machine goes about doing what it does. That they understand exactly what each of those machines treats best.

There's a big learning curve ahead for Jamie's doctors, probably. And a big learning curve for you, too, in order to figure out if his doctors really have "learned" about those new machines.

Good luck!!

Hope you're getting some well deserved uninterrupted sleep and that Jamie's doing ok.

Jamie's therapist and I spoke today and she did not know much of the specific machines you mentioned. I accidentally said I thought the machine was a respironics which turned her off quite a bit. She was concerned about the quality of the respironics, didn't trust information from them... blah blah. I don't know either way but the truth is I own the resmed I have now at a tag of around 5k to my insurance and do not qualify for a new one until 2009 or so. I am not broke at the moment and if nec. can afford another machine.

We discussed the cause of the low mv a bit and based on information from the study we determined that I might be a bit off the recommendations of:

Rec: 4 / 10-12 backup rate of 18 rise of 300ms.
Jamie: 4.8 / 10 bu 16 rise 200ms.

I have adjusted the machine to: 4 / 10 bu 17 and rise of 300 and will review in the morning and check on him through the night.

The lower backup rate helps his rythm with the machine. He seems to never keep up at 20 but 16 he does really well. 16 is approx double the 8 breaths per minute he does well on his own.

She also said not to worry myself too much about shutting the alarm off. It really has become a security blanket for me as I have made it my night job to worry about him. The idea that he will stop breathing or get in trouble and the alarm will alert me to come and save him is really the point I think.

I really think he is ok... just always that shred of doubt and the possible guilt if something goes wrong that scares the shit out of me.


We are about to move to KY and I am looking forward to meeting our new sleep team. Any suggestions?

Thanks again