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Advice Needed - BiPap - MommaBear - 08-21-2022
Hello, I’m new here. Thanks in advance for any advice! My son has hypoventilation syndrome (Elevated C02), and mild central apnea - diagnosed just before his 18th birthday. The first doctor did not recommend a backup rate, so he was given the Resmed Aircurve 10 S to start. He was making zero improvement but doctor showed no interest in looking at the data, so we got another opinion. Second doctor said he for sure needs a backup rate. He gets approved for it, and were told he would get the Aircurve ST. But they showed up last week with his rental and it is a Luna G3. It’s clunky and it doesn’t work as smoothly as the Resmed. He can’t get used to all the ways this one is different, and to be honest it doesn’t really compare to what we thought we were getting. My son is not sleeping with a machine at all - he fights with it until he is exhausted, then ends up taking off the mask to finally fall asleep. He said the easy breathe setting on the Resmed made it possible for him to tolerate therapy. The DME company says we can’t get a resmed for 6-10 months.
Working on switching to a new DME, but the process isn’t super easy since he turned 18 after his sleep study. I’m hoping to work the bugs out of that this week, but it will be at least several weeks before he has one. And I think the machine he really needs is the Aircurve ST-A since that helps with Hypoventilation? The doctor was willing to write for that one specifically in the Rx.
Should I just tell the DME company to pick this machine up and wait for a better one, or tell my son to keep fighting to fall asleep each night and hope this machine clicks with him eventually?
RE: Advice Needed - BiPap - StevesSp - 08-22-2022
I'm afraid I can't help with fighting the US system, being in Oz, but as a parent myself and having an adult child with chronic health problems, I need to at least offer my sympathy for the stress I know this must cause you. As challenging as this must be for the poor fellow, I bet he's not the only one losing sleep over this. He's lucky you're there for him.
Good luck. I hope you get this all sorted out and you BOTH get your lives back.
RE: Advice Needed - BiPap - MommaBear - 08-22-2022
Thank you, I really appreciate it. You are right, I am in this fight to advocate for him and cannot rest myself until he can function and enjoy life to the best of his ability.
RE: Advice Needed - BiPap - Sleeprider - 08-22-2022
DECLINE this machine! The Luna G3 BiPAP does not have a backup rate. It is a discount Chinese fabricated bilevel with CPAP, Bilevel-S and Auto bilevel. It does not have the required ST therapy mode and its performance matches the clunky appearance you already noted. Since this device does not meet the prescription, you should be entitled to return it.
I'm going to suggest the Aircurve 10 ST is also not an ideal machine, but will work better than the VPAP-S due to the backup rate. There are a couple of options we can discuss. The VPAP-ST provides fixed inhale and exhale (IPAP/EPAP) pressure. There is no intelligence in the machine, and it is suited for individuals with good spontaneous breathing that need breath augmentation and pacing provided by the ST, however it is poorly suited to treat central apnea. Two alternatives should be considered, and I have no idea how your doctor figures things out, but doing an in-clinic titration test would seem prudent for prescribing an appropriate device and pressures for a pediatric patient.
The Resmed Aircurve 10 ASV (Adaptive Servo Ventilation), protects the patient's minute vent with adaptive pressure support. That means the IPAP pressure changes to increase respiratory volume as needed, and when needed. The normal operation is similar to the Aircurve 10 VPAP-S with a minimum EPAP and pressure support, but the pressure support can increase on a breath by breath basis to even treat central apnea. If the patient does not spontaneously initiate a breath, the ASV will increase pressure to cause a breath, and once the normal lung volume is achieved, it reduces pressure back to EPAP. Many of our members use this device to treat central and complex sleep apnea. The Resmed ASV does not have a settable ventilation target rate, and uses the patient's minute vent and respiration rate from the preceding 90 seconds as the target volume and rate. This is a problem in some hypoventilation patients because the target vent rate can become progressively lower, and that may be contraindicated for your son.
The Resmed Aircurve 10 iVAPS is an intelligent form of the ST therapy and includes an ST mode as well as iVAPS (intelligent volume assured pressure support). The iVAPS mose works similarly to ASV, but is more targeted to pulmonary and thoracic diseases that include hypoventilation and forms of central apnea as well as COPD and more severe disease related issues. It is a ventilator that can target alveolar ventilation and maintain that target through the entire night. We have had members that require full ventilation support use this machine.
Please read this Resmed Sleep Lab Titration Guide with a focus on understanding the recommended uses for ST, iVAPS and ASV. This will help you to understand how each machine works, and the conditions each device is intended to treat. Once again, do not accept the 3B Medical G3 Luna! https://document.resmed.com/en-us/documents/products/titration/s9-vpap-tx/user-guide/1013904_Sleep_Lab_Titration_Guide_amer_eng.pdf
As an after-thought, if we could look at some data from the VPAP-S we might be able to suggest some modifications that would make that machine more successful. It has a number of functions, most clinicians are unaware of that can help encourage spontaneous breathing and reduce central apnea. It is clearly not intended for therapy of central apnea, but it would be interesting to analyze the issues your son had with this.