Little Larissa - please read

brazilian, while Dr. Silvana plans what's needed for Larissa, here's a link to some info about the AVAPS machine SAG mentioned:

http://www.bipapavaps.respironics.com/

I applaud Banned and Pulmonary Solutions for what they are doing on behalf of that little girl. And you, brazilian, for coming to this message board and starting the ball rolling for her. Good, compassionate people, all of you!

Following RG's link is this summary ...

Average Volume Assured Pressure Support — AVAPS™ — is a revolutionary method of ensuring the delivery of a consistent tidal volume to patients requiring ventilatory support. AVAPS uses an algorithm that estimates the patient's tidal volume over several breaths. The algorithm calculates the change in pressure needed to achieve the target tidal volume then slowly increases or decreases the IPAP pressure to achieve the proper pressure support. AVAPS™, therefore, adapts to disease progression and changes to meet the patient's specific needs while achieving patient comfort and safety.

Compare that to the Biap AutoSV ...

The BiPAP autoSV sleep therapy system delivers optimal therapy for complicated sleep-disordered breathing patients utilizing a multilevel algorithm. On a breath-by-breath basis, the revolutionary algorithm uses Digital Auto-Trak™ Sensitivity to change pressure support, when necessary, to maintain a stable breathing pattern. In addition to this breath-by-breath adjustment of pressure support, the BiPAP autoSV algorithm also calculates the patient's spontaneous breathing rate and will automatically trigger a breath should the patient have a central apneic event. This algorithm rapidly helps normalize respiration and return the pressure to the minimum required therapy pressure once ventilation has been normalized.


My interpetation of the two is that the AVAPS machine delivers a 'constant' tidal volume (maintains a constant airflow volume). This is part of what the AutoSV does. I see this as of benefit to people who may have had an operation or have a lung disease.

The AutoSV seeks to maintain peak flow, to keep the breathing pattern regular and also can ventilate a breath in the event the sleeper suffers a central apnea where patient flow ceases or drops to a very low level outside the target it is tracking.

SAG - how would you summarize these two ?

DSM

DSM

StillAnotherGuest wrote: And elevated CO2 is pretty much a contraindication to ASV.

Perhaps it might be a good idea to ask Dr. Silvana how she wants to plan her attack, and if necessary, maybe exchange machines, if that's what's needed and Banned could do this.

Regardless, I do not mean any of this to downplay the very charitable gesture that Banned has done.

But stop wingin' the dials around anyway.
SAG

My thanks too, SAG and RG, for signing in on this one.

Prior to the acquisition of the Respironics BiPAP Auto SV I had thought of calling Johnny and the folks at CPAP.com to inquire if they would split the price with me on a Respironics Synchrony machine that Dr. Silvana had specified. However, upon checking with CPAP.Com on the availability of a BiPAP Syncrony, the CPAP.com website said the machine was currently not available for sale. I'm convinced that CPAP.com would have, and still will be happy to contribute to this charitable cause. Hearing the words Central Apneas, I went to my local brick & mortar provider, and with my script for an SV, the limited knowledge we had at the time, and quickturn to get something to Brazilian in Fairfax, VA. by this week, we decided on the BiPAP Auto SV as a place start.

Iam, and I know you all are totally committed to getting Larissa whatever machine will do the job best for her. I have absolutely no problem with Dr. Silvana trialing the BiPAP Auto SV, and saying either now or later, "Sorry, we cant' use the BiPAP Auto SV in this case. Will you please provide for the BiPAP Synchrony, AVAPS (or any other machine she feels will get the job done for this little girl)".

Sending BIPAP machines back and forth to Brazilian is no problem for me, as long as we can get them in and out of customs without an issue. I would like to wear out several SV machines before I die, so I have no worries about spares in the closet.

I appreciate your kind words, SAG, I appreciate the kind words from everybody. I'm still learning from you all everyday, and I would have never have learned so much with out the help from all of you great people on this forum.

So, I guess we wait for Dr. Silvana to tell us what she needs, and go from there. Her call, we're just here to support her.

Banned

The point about the SV being a CO2 generator makes sense to me. It probably does this when it goes into SV mode? The question from my untrained mind would be. "Would the benefit of SV to treat Central Apneas out-weigh the risk of generating more un-expelled CO2 in a CO2 retainer?" Can that be measured in a titration study?

How does an AVAPS machine ventilate for centrals?

Banned

Banned wrote:So, I guess we wait for Dr. Silvana to tell us what she needs, and go from there. Her call, we're just here to support her.

I think that's a great strategy. However, this BiPAP autoSV model can be set up with manual parameters just like the Synchrony ST that Dr. Silvana originally requested. So what's Dr. Silvana missing other than now having extra modality options (which may come in darn handy some day for Larissa)?

I definitely agree that Dr. Silvana should do all the dial wingin'. If she needs help from anyone here, then let SAG provide that help if he's willing. He's our pro and one of our good-hearted angels.

Banned, you are a mountain of a man in my book. Brazilian is too. All three of you guys are angels for Larissa IMO. That's such GOOD work form the heart, guys!!!

So here's that document in which Dr. Silvana Teotonio Simão requests a Respironics Synchrony in line 3:



Should be good to go by simply configuring that BiPAP autoSV exactly as the BiPAP Synchrony was going to be set up for Larissa. Then Dr. Silvana Teotonio Simão may at least consider other BiPAP autoSV options/modalities for Larissa in the future---should circumstances warrant.

And SAG may have some great RT wisdom to share with Dr. Larissa about the virtues of AVAPS.

Banned wrote:The point about the SV being a CO2 generator makes sense to me. It probably does this when it goes into SV mode?

Right. Since the Minute Ventilation Target (ResMed) or Peak Flow Target (Respironics) is less than what they evaluate as baseline, there is pressure exerted on Minute Ventilation reduction with consequently an increase in CO2 (you only need 2-3 mmHg) to break the cyclic effect. ASV isn't designed to necessarily blow through individual centrals, it's desgned to break the cycle of periodic breathing.

Banned wrote:The question from my untrained mind would be. "Would the benefit of SV to treat Central Apneas out-weigh the risk of generating more un-expelled CO2 in a CO2 retainer?

That question would best be answered by looking at the PSG, seeing how many centrals there were as well as their nature (are they periodic or not). But with the head CT and MRI showing some sort of abnormality and the hypercarbia (which, in a child, is VERY worrisome), I would think that the overall pattern of central hypoventilation is the major problem. Baseline breathing is severely decreased. If these are disorganized hypercarbic centrals, then correcting underlying hypoventilation may also correct whatever central apneas there are.

An equal amount of insight would be gained by determining if she's a surgical candidate (or already had T&A). OSA in children is quite responsive to surgery.

Banned wrote:Can that be measured in a titration study?

Measuring ETCO2/TcpCO2 would be the best way to do that.

Banned wrote:How does an AVAPS machine ventilate for centrals?

Trying to treat hypocarbic central apnea would not be an appropriate use for AVAPS, hypercarbic centrals would hopefully respond as above.

BTW, since AVAPS is adult-oriented, too (as is technically, just about everything except ResMed VPAP III ST-A if you don't use a real ventilator) with a minimum Vt of 200 ml, she may need to get a little bigger to use that option. Current Vt should be readily discernable from ventilator parameters.

But again, they're down there, we're up here, so it's Dr. Silvana's call, for now and the future (if there were only one machine to be had, and if my guess is correct, then the next desirable option after classic BiPAP would be some sort of Volume-Assured Ventilation). If machines are now academic, then considering something like a Pulmonetics LTV-900 might be the BEST answer.

On the other hand, Synchrony is as dependable as a rock, and sometimes, less is more.

Y'know, the other thing is, if Laryssa is doing well with her present mask, you might want to find out what it is and get a couple of those down there. As noted, finding a good child mask can be REALLY tough (I was thinking it was going to be something weird like an Infant Nasal Cannula).

SAG

Friends:

I am in a hurry right now, could not even read the posts after rested gal's last one. I am leaving to the airport, and will try do read them in Sao Paulo, where I have a few hours wait for my flight to Washington.

I am posting below Larissa's PSG results. With time, I will try to translate the portuguese parts.

Regards to all

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?

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

http://www.cchsnetwork.org/articles/CCHS%20Chen.pdf
(Adobe PDF document describing CCHS)

-and-

http://www.cchsnetwork.org/
(CCHS Family Network home page)

Bravo! to all involved in this discussion and those providing monetary support. My heart goes out to this little girl and I hope she does well on this machine.

Banned, I am unclear. Did this brick and mortar store donate this machine, or did you buy this out of your pocket? If you purchased it, perhaps some of us here could paypal you a donation of support--because this would be quite a large financial load to take on by oneself. I may not be able to contribute much, but if we all chipped in a little, it might help pay for the machine in part and at least relieve some of the financial burden.

Kudos again, to all involved!

Jen

socknitster wrote:Bravo! to all involved in this discussion and those providing monetary support. My heart goes out to this little girl and I hope she does well on this machine.

Banned, I am unclear. Did this brick and mortar store donate this machine, or did you buy this out of your pocket? If you purchased it, perhaps some of us here could paypal you a donation of support--because this would be quite a large financial load to take on by oneself. I may not be able to contribute much, but if we all chipped in a little, it might help pay for the machine in part and at least relieve some of the financial burden.

Kudos again, to all involved!

Jen

Jan
Banned funded it himself.

DSM

socknitster wrote:I may not be able to contribute much, but if we all chipped in a little, it might help pay for the machine in part and at least relieve some of the financial burden.
Jen

Hi Jen,

That's a very generous thought and so was mellbella's offer for tubing/filters/Aromatics/ etc.. Everyone is contributing in their own way by reading and posting. There is nobody on this forum who can't appreciate this happening with our respective ages and than imagining what it must be like to be barely 3 years old.

As I understand it, Brick & Mortar and Internet DME suppliers are constrained by law to sell machines only in the USA. However, there is nothing to stop private parties from acquiring and suppling machines off-shore for humanitarian purposes. The General Manager and staff of Pulmonary Solutions, Santa Clara were stellar in there performance under the rushed constraints with no time offered or given to consult the Corporate office. I discussed Larissa's case with the General Manager who was compassionate from the start, stated she did not have a Respironics Synchrony, provided a fair price for the BiPAP Auto SV which in our collective wisdom thought would be a viable substitute given the central symptoms, asked an RT to step in and discuss what masks might be appropriate for a 3 year old, gave me those masks for free, and then offered her own BiPAP Auto SV Provider Manual required for the Brazilian Medical Team to properly set up the youngsters machine out of her personal 3-ring binder, as there were no other manuals in the facility. Sometimes, those things are worth the price, and for all that, consider Larissa's first machine bought, paid for, and down the road. And with the learning and support I have received from everyone on this forum, it was only a small payback.

So, to address your question directly, yes your future contributions or donations be appreciated by Larissa, I'm sure. There will be recurring support for filters/tubing/aromatics as mellabella and I believe another person suggested, the appropriate mask as SAG suggested, and the replacement machine (maybe a more economical machine, maybe not). I do not have a clue how long a Respironics BiPAP Auto SV will last. But there is time to perhaps establish a fund for Larissa to help with her future needs, including asking Brick & Mortar DMEs and Internet providers for their help.

It's certainly up for discussion of how the forum members can support this Sleep-Apnea poster-child. Thank you, Jen!

Banned

Banned, could you please PM me your email address?

Thanks.

rested gal wrote:Banned, could you please PM me your email address?

RG,

I'm Mac based and this thing has trouble sending an initial Cpaptalk PM for some reason. My email address is daviderck@sbcglobal.net

David (Banned)