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-SWS wrote:The automated ET CO2 reports show no data variability whatsoever. That, of course, makes me wonder about the accuracy of ET CO2 data collection during the PSG.

And ET CO2 is presumably central to diagnosis and treatment. SAG?

Right, that was the key parameter to look at in detail. It's overall behavior during the night, % of Time at different ranges (as you see, those values should have been reported out) and observed peak during the night.

Some of this data appears in the text report. It looks like the ETCO2 ranged from 44-56 mmHg with a peak of 58 mmHg when supplemental oxygen was used. I wonder when that went on, maybe after that initial burst of desats.

Perhaps they couldn't interface the ETCO2 monitor to the PSG and manually plugged in 50.3 to the ETCO2 channel, that would explain the fixed value.

Oh well, we got what we got (akin to "It is what it is.")

And what we got is at least 3 ALTEs in a relatively older child, so perhaps therapy is geared toward prevention of another one of those. If that's the case, then maybe it's the alarm system of the machine that becomes the priority.

On the other hand, a garden-variety ALTE doesn't leave you intubated for a month.

She still could be/was a surgical candidate.

-SWS wrote:I also wonder if Congenital Central Hypoventilation Syndrome (CCHS) is what we're looking at

I don't think so, the ETCO2 doesn't appear to be high enough, long enough, and the CT and MRI appear to be abnormal.

SAG

Well, I had to go a'Googling:

ALTE

Apparent Life Threatening Event

http://www.aafp.org/afp/20050615/2301.html

http://sleepdisorders.about.com/cs/slee ... a/alte.htm

And since those are hospital admissions, the primary problem problem might not even be sleep-related, but pulmonary-related!

But trying to get a PFT on a 3-year old is much more fun than getting them to wear an ETCO2 cannula.

Speaking of fun, trying to understand PSGs is fun, trying to understand pediatric PSGs is a riot, trying to understand pediatric PSGs in Portuguese is a downright HOOT!

SAG

StillAnotherGuest wrote: Some of this data appears in the text report. It looks like the ETCO2 ranged from 44-56 mmHg with a peak of 58 mmHg when supplemental oxygen was used. I wonder when that went on, maybe after that initial burst of desats.

Think you got that right:

Google's Portuguese-to-English translator wrote:EtCO2 ranged between values of 44 up to 56 mmHg and had a peak of 58mmHg that occurred after supplementation of Oxygen from 0.5 to 1 litre per nasal catheter.

It appears that elevated ET CO2 or hypercapnia manifests only after supplemental oxygen is administered. The conclusion text from Larissa's PSG follows (translation disclaimer: some text portions reordered/reworked by me toward more readable sentence logic):

Google's Portuguese-to-English translator wrote:The examination described on page shows a breakdown of previous stages of sleep close to normal, except for a reduction in the percentage of REM sleep. There was hypercapnic aggravation after supplementation of Oxygen. This [additional] syndrome/symptom can be secondary to Obstructive Sleep Apnea of a moderate degree and/or be associated with central hypoventilation [sic]. These changes are indicative of the use of CPAP at night. The low percentage of REM sleep may underestimate the respiratory abnormalities.

Well, Larissa's case is certainly looking less and less like a candidate CCHS case to me. However, a scant perusal of medical literature also shows that cases of CCHS often reach adulthood undiagnosed. Some/many of these are presumably slight-to-moderate and/or atypically presenting cases of CCHS. I don't see much medical literature delineating just how slight-to-moderate CCHS might symptomatically present or--perhaps more importantly--how CCHS can atypically present. However, there is a straight-forward five-variable facial-phenotype assessment that Dr. Silvana Simão can use to screen Larissa for CCHS with an eighty-some percent accuracy. And there is a more definitive PHOX2B genetic-determinant test, should Larissa screen positive for CCHS:

http://www.ncbi.nlm.nih.gov/pubmed/16327002

It's that marginally "inferior inflection of the lateral segment of the upper lip vermillion border" in Larissa's picture that admittedly gets me to wondering just how Larissa might screen with the entire facial-phenotype CCHS assessment. But then again when I look closer, I realize how human cognition is psychologically biased to often find non-existent patterns and solutions!



Banned, is that email address also a PayPal account where we can send contributions toward Larissa's BiPAP autoSV?

-SWS wrote: Banned, is that email address also a PayPal account where we can send contributions toward Larissa's BiPAP autoSV?

Correct. The email address would also be my PP Account.

A woman named Karen who owns Pad-a-Cheeks sent a couple of pairs of kid-colored Pad-a Cheeks to Brazilian and offered a donation. As did RG, and Jen, and many others.

Tell you what, all donations graciously accepted on Brazilian's (Nelson Baumgratz) and Larissa's behalf, and thanks and blessings to you all!

Banned

Thank you, Banned!

I just sent a little $$ to help you defray that huge BiPAP autoSV gift, or otherwise apply anyway that you see fit.

-SWS wrote:Thank you, Banned!

Thank you sir, thank you all.. I'm sure Brazilian will express to all concerned that the Respironics BiPAP Auto SV is a forum contribution from everyone here who wishes Larissa the best!

Banned

Thank you for providing your email. I cannot send much, but if enough people send just a little it will make a difference for you. I just think that you are a very generous person or this particular case really tugged at your heart. But you shouldn't have to bear the burden of this expense alone. It takes a village, as they say, and there is a whole village here who can help.

Jen

Banned,

AS you can gather a few of us want to PP you some funds in support of this very generous gift but your replies here imply you are going to give the donations away ? - I am keen to make a donation but want it to go to you towards your expenses. I am more than happy that the other parties have been generously provided with already.

Can you confirm that a donation to you will be towards your costs

Cheers

DSM

dsm wrote: Can you confirm that a donation to you will be towards your costs

Yes, and thank you for the opportunity to make myself clear. Larissa is 'our' opportunity and not 'my' opportunity. The Respironics BiPAP Auto SV is a gift from the forum (all of us) and not just me.

I think SAG said it fairly clearly. Larissa's sleep apnea is a symptom/manifestation of something much more challenging. The BiPAP Auto SV is a band-aid (albeit a nice band-aid) from all of us. It will let her get home and spend some happy time with her family, where they can care for her and give her their support and love. Bless her heart, staying at the hospital has got to be getting a little boring for her.

So, yes, any and all of your donations to me toward the cost of our gift is greatly appreciated. The credit card statement will be here in less than a month!

Thanks!
Banned

StillAnotherGuest wrote: Speaking of fun, trying to understand PSGs is fun, trying to understand pediatric PSGs is a riot, trying to understand pediatric PSGs in Portuguese is a downright HOOT!

So, would titration/setup of a Respironics BiPAP Auto SV for a three-year-old be fun, a riot, or a HOOT?

Assuming you set EPAP 5cmH2O and IPAP MIN 15cmH2PO according to Dr Silvana's script, that still leaves you to set IPAP MAX, Breath Rate, Inspiratory Time, Rise Time, Ramp, Ramp Start Pressure, Apnea Alarm setting, Patient Disconnect Alarm setting, Low Minute Ventilation Alarm setting, Reset Therapy Meter setting, and LED Backlight setting. What do you do? And there is no Mask setting?

How do you adjust Rise Time or Back-Up Rate for a three-year-old? l trust she can't articulate a whole lot of feedback with regard to her therapy and the machines settings. That can't be fun!

Banned

Banned wrote:

StillAnotherGuest wrote: Speaking of fun, trying to understand PSGs is fun, trying to understand pediatric PSGs is a riot, trying to understand pediatric PSGs in Portuguese is a downright HOOT!

So, would titration/setup of a Respironics BiPAP Auto SV for a three-year-old be fun, a riot, or a HOOT?

Assuming you set EPAP 5cmH2O and IPAP MIN 15cmH2PO according to Dr Silvana's script, that still leaves you to set IPAP MAX, Breath Rate, Inspiratory Time, Rise Time, Ramp, Ramp Start Pressure, Apnea Alarm setting, Patient Disconnect Alarm setting, Low Minute Ventilation Alarm setting, Reset Therapy Meter setting, and LED Backlight setting. What do you do? And there is no Mask setting?

How do you adjust Rise Time or Back-Up Rate for a three-year-old? l trust she can't articulate a whole lot of feedback with regard to her therapy and the machines settings. That can't be fun!

Banned

Banned wrote: Assuming you set EPAP 5cmH2O and IPAP MIN 15cmH2PO according to Dr Silvana's script, that still leaves you to set IPAP MAX, Breath Rate, Inspiratory Time, Rise Time, Ramp, Ramp Start Pressure, Apnea Alarm setting, Patient Disconnect Alarm setting, Low Minute Ventilation Alarm setting, Reset Therapy Meter setting, and LED Backlight setting. What do you do? And there is no Mask setting?

How do you adjust Rise Time or Back-Up Rate for a three-year-old? l trust she can't articulate a whole lot of feedback with regard to her therapy and the machines settings.

I was wondering about that also. My first assumption is that if they are willing to allow Larissa to sleep at home on BiLevel at 15/5, then they have already successfully set her up with 15/5 BiLevel on the hospital ventilator. They clearly have to find out whether 15/5 BiLevel is even feasible before sending her off. So I think we can assume that feasibility trial has already succeeded.

My second assumption is that they have already successfully arrived at many or most of the BiLevel settings such as rise time, backup rate, etc. And if those parameters have already been established in the hospital, then transferring those established BiLevel settings to the home BiLevel machine should be a fairly straight forward matter for Larissa's attending staff.

Since Larissa's hypercapnia is presently considered secondary to obstructive apnea, her doctor just might want to briefly yet very safely trial Larissa in SV mode toward exploring a somewhat perplexing underlying etiology. BiLevel at 15/5 is not at all normally required for an obstructive apnea patient, let alone a pediatric case of OSA. There's more going on here than just basic OSA.

dsm wrote: To set up a Bipap AutoSV like the Synchrony

You would set epap=5 IpapMin=5 IpapMax=15 Risetime (as needed) and BMP=auto or BPM= a backup rate in needed.

To set up a BiPAP AutoSV like an SV (with a conservative 3cmH20 of SV for centrals)
You would set Epap=5 IpapMin=15 IpapMax=18

That sounds easy enough. Rise Time and Backup Rate in lieu of Auto confuse me.

SWS-
Appreciate your earlier attempts to decipher the Reports. I have a co-worker breifly read Dr. Silvana's first report today. I was amazed he understood all of her medical terminology, and could explain to me the implications. I could not write or recall as fast as he was explaining. (He is a electrical/mechanical systems engineer). He was pretty amazed at that little report. There is allot in it and the details are pretty far reaching. He said he will try and spend more time with it and me tomorrow so I can write them down and post.

Banned

Banned,

Risetime is usually a comfort vs required airflow setting.

Setting the risetime to the shortest period means more air flows during that machine cycle - setting the risetime to the slowest setting means less air flows.

If less air flows it can reduce the effectiveness of the therapy so the actual setting is usually a balance between meeting therapy needs vs comfort from the chosen setting.

Fast risetimes bother some people.

Re BPM rate. Auto is adequate for people who are not CAs sufferers.

Auto allows the machine to run like a bit like a spontaneous bilevel - but with the SV machine, it will react if the target of peak volume is not being met so that it will take over. i.e. If a CA occurs then the target of peak flowis not being met & within x time (I don't know what x is), the machine will take over & try to start ventilating.

The worrying aspect of how it does this is that I have repeatedly seen DLFO (from his data) stop breathing & the machine go to max pressure to try to inflate him be he still doesn't breath so the machine sits at 30 CMS (his IpapMax) and can do so for many minutes at a time.

Setting a BPM=12 (for example) would in DLFO's case cause the machine to cycle the pressure (servo ventilate) whenever DLFOs breathing rate drops below 12 breaths or if the target of peak flow is not being met.

DLFO said his doc agreed with this when DLFO put it to him while showing him his nightly data. The doc suggested he switch BPM from Auto to 12 BPM.

I suspect that this situation would not arise on the Vpap AdaptSV, but the Bipap AutoSV does have that BPM setting to cater for situations like DLFO's.

DSM