[Pressure] New Stellar 100 too strong for 12yr old daughter

[Melisel]

I am completely new to this website but looking to see if anyone has any advice for me before we go back to the hospital tomorrow.

My daughter is 12 years old and first started on her Bipap 'Nippy +' machine in 2011 due to sleep apneas and high CO2 which are caused from an inoperable brain tumour in her brain stem.

Last Friday the hospital changed her machine to the ResMed Stellar 100 with a H4i humidifier. It looked great , way smaller and lighter which we liked for her bedroom and for travelling, however.... its is way too strong and powerful for her.

Her settings are on 20 IPAP / 8 EPAP the same as her Nippy. But her Nippy was more like a gentle breeze and was a normal sort of breath in breath out. The new stellar is more like a hurricane and doesn't seem to have a nice breathing pattern. The first 3 nights she hardly slept as found it really hard breath. Then on Monday and Tuesday night her tummy was so bloated It looked like she was going to pop and was full of wind and in agony with tummy pain.

I have picked up her old Nippy machine and she slept back on that last night and we have an appointment tomorrow to meet with her consultant .

My question before I go is why is it so different. The Consultant and her team just keep telling me its the same settings so will be the same but I have tried it and I don't know how she even managed 5 nights. It really is just how she explained it a gentle breeze on the Nippy and a hurricane on the Stellar 100. Does anyone on her have any experience as to what is wrong and why it is soon different for her. My daughter puts up with so much her brain tumour causes and she doesn't need this on top of everything else , especially when the hospital don't seem to understand how different it is.
Thank you for any advice

[srlevine1]

I wish you and your child the best.

But because your device is a ventilator rather than a simple CPAP, you should rely on expert assistance to properly set-up the machine to avoid adverse effects.

There could be issues with the therapy pre-sets, in the rise/fall timing as well as other specialized controls like trigger values and sensitivities.

Make your team work to solve your daughter's actual problems -- not to tell you what it is supposed to be like.

Again, best of luck.

[DeepBreathing]

Hi Melisel. Welcome to Apnea Board.

We're a self-help group for sleep apnea patients, and this type of ventilator isn't something we would normally give advice on. However, I can offer a few general comments which might help in your discussion with your daughter's consultant.

You mentioned that the Nippy machine was bought in 2011, so it's possible that wear and tear over time has made it less efficient, so that it's no longer putting out the prescribed pressure. So the new Resmed might feel over strong in comparison.

Looking at the specifications of the Stellar, there is a large number of settings in addition to the pressures - adjustments to some or all of these might have a beneficial effect.

Modes
S/T (Spontaneous/Timed)
PAC (Pressure Assisted Control)  
CPAP (Continuous Positive Airway Pressure)
S (Spontaneous)
T (Timed)
Ticontrol
Ti Max 0.1–4 sec  
Ti Min 0.1–Ti Max
Respiratory Rate
5–60 bpm
Rise Time
Min, 150–900 msec (approx.)
Trigger and cycle
Five sensitivity settings

Apart from these settings, it may just be that reducing the pressure to a comfortable level will also help. You can download the specification sheet here:  https://www.resmed.com/ja-jp/dam/documen...ac_eng.pdf

I don't know about the situation in the UK, but consultants here are often not on top of the details of the various machines, and sometimes you're better off working with a technician who understands the nuts & bolts.

I hope this little bit of information is helpful to you, and wish you and your daughter all the very best.

[ajack]

I would think that with the same pressure the different feeling would be in the Ti, rise time, trigger and cycle settings. I wouldn't touch any of the settings.

Talk it out with her doctor ASAP. It may be a mistake with the set up or she may need the new settings. Using the nippy till you have an answer may be the best option for now.

I would also ask for the machine to be pressure checked, to make sure 10cm is actually 10cm

[Matt00926]

It would be helpful if you can access the clinical menu and take a screen shot of all the settings, especially the chosen ventilation mode. Did they monitor your daughter's CO2 level over night and adjust the ventilator settings accordingly? 

If they are just using a regular spontaneous bi-level mode I don't see the point of a ventilator being used unless you need inspiratory pressures above 25 cm H2O or having alarms set is important.

A pressure support of 12 is a lot for most people, especially a child. If the pressures are indeed clinically correct, she may need to start with a lower span and gradually have the inspiratory pressure increased so she can get used to it.

Most likely the default settings on the ventilator pertaining to rise time and inspiratory time (Ti min and max) are not in sync with your daughter's breathing. 

A fast rise time can be very uncomfortable for some people. The default is 150ms which is considered relatively fast - mainly advantageous for people with obstructive lung disease like COPD who are in danger of trapping air. For me, the difference between 150ms and 300ms is night and day. 150ms feels like a jet taking off on my face. 300ms is comfortable without feeling like I am starved for air.

[PaulaO2]

I would bet the nippy got old and wasn't putting out as much pressure and she got used to that. Take it to the clinic and ask them to check the pressure. If the Nippy is putting out the correct pressure, and so is the new one, it could be the rhythm is different enough she is noticing it. Only time will fix that.

And if I am reading this correctly, this is not a ventilator, but a CPAP machine, correct? It is used to treat her sleep apnea, not assist with breathing itself?

[DeepBreathing]

Hi Paula. The stellar is actually a ventilator, not a CPAP.

https://www.resmed.com/uk/en/healthcare-...eries.html

[Matt00926]

Indeed. The Stellar 100 is an odd choice though as it doesn't have any real advanced ventilation modes. Only S/T and PAC are really unique, and those can be found on the S9 ST-A devices (which also include iVAPS). The ST-A also has alarms. The T (timed) mode is hardly ever used in conscious, breathing patients. S/T can be found on many other regular bi-levels/nippys. I hope the insurance fully covers the Stellar.

[trish6hundred]

Hi Melisel,
WELCOME! to the forum.!
I wish you and your daughter good luck with her therapy and I hope the machine problem is resolved, make sure you talk to her doc about the problems she is having.
Hang in there for more responses to your post.