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My daughter has severe learning needs has Central apnoea attacks in sleep triggered by seizures stops breathing lips turn blue within 5 seconds we have to stimulate her to get her breathing again, has now been on Ipap machine  for one year all indications suggest ASV ventilation is best vent to treat this form of apnea  present vent causes a lot of desaturations in sleep, currently she see's an Anaethetist for her apneas who has never heard of the ASV form of ventilation before i informed him, but now seems to have become an expert and states that the ASV form  of ventilation is no good for central apneas and mild obstructive apnea and the makers of the ASV vents aggree with him, my daughter is 25 and has Lennox Gastaut syndrome and last had a blue lip Central apnea  5 weeks ago
can anyone offer advice.

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This is the opposite of what I've been told. I have a VPAPIII ST-A that has a high pressure of 30 available, as well as timed respirations. My sleep Doc says this machine is used to treat central apneas. I have it for the high pressure availalble, but my pressure have been reduced so I will keep this monster of a machine until we're sure I am having/not having centrals. If not we will step down to a less sophisticated machine. This machine is one step before a ventilator- non invasive, timed ventilation.
Good luck, keep us posted. You also may want to post to cpaptalk.com where some folks have experience with the servo vents.
LGS patients tend to have complex apnea.The apnea can run from OSA-to mixed, centrals and or Cheyne-Stokes Talk to your MD about Timed nPAP ventilations.
D. W. Conn said:
LGS patients tend to have complex apnea.

Do you have documentation or can explain the physiology for this?

Thank you.
Are timed nPAP ventilations the same thing as Bpap ST?
Dysfunction of central nervous system centers that regulate respiration can be due to damage of brainstem or result from genetic disorders. LGS falls in this category. Neurological conditions may be idiopathic (primary) or associated with lower brain stem lesions.
LGS patients may have a variety of seizures during Non-REM sleep periods. This too can result in arousal based apnea events.

These break down to seizures during sleep- may result in interruption of the breathing mechanism. This results into central sleep apnea. The seizure activity may also impair the signal at times reducing the breathing effort. AUTO SV can initiate breaths that may end the cycle of impairment at that moment.
Readings from Med Help, Neurological Journal of medicine, WebMD hint at the thought that AUTO SV can improve quality of sleep but that it treatment is still difficult.
OK, pardon me, but I'm even more confused.

D. W. Conn said:
Dysfunction of central nervous system centers that regulate respiration can be due to damage of brainstem or result from genetic disorders. LGS falls in this category. Neurological conditions may be idiopathic (primary) or associated with lower brain stem lesions.

Are you saying that LGS is genetic? Do you have documentation of this? All I can find is that there may be a history of epilepsy.

Do LGS patients have a higher incidence of SDB? Do they in fact have "Dysfunction of central nervous system centers that regulate respiration" and

D. W. Conn said:
LGS patients tend to have complex apnea.The apnea can run from OSA-to mixed, centrals and or Cheyne-Stokes

My understanding of LGS is that they have tons of refractory seizures. However, a propensity for seizure does not automatically translate into "central sleep apnea". The OP is not clear as to whether the patient has "central sleep apnea" or became apneic during seizure (which IMHO is what happened). That does not call for PAP therapy. "Once every 5 weeks" calls for an apnea monitor, not a PAP device.

D. W. Conn said:
LGS patients may have a variety of seizures during Non-REM sleep periods. This too can result in arousal based apnea events.

Right.

But wait a minute. How do seizures cause arousal-based apnea events? How can you move from SDB to post-ictal metabolic state? Are you saying that post-ictal respiratory disturbance needs treatment with ASV or "Timed nPAP ventilations". Can post-ictal even be called sleep? IMHO, those disturbances need to be left alone, they are merely compensating for the event, so

D. W. Conn said:
These break down to seizures during sleep- may result in interruption of the breathing mechanism. This results into central sleep apnea.

is incorrect.

D. W. Conn said:
The seizure activity may also impair the signal at times reducing the breathing effort. AUTO SV can initiate breaths that may end the cycle of impairment at that moment.

Then the treatment of apnea (and not "sleep" apnea), or respiratory arrest (depending on the length of apnea)(and not "an" apnea, it's a state and not an event) during seizure activity should be treated with nPAP or ASV? How do you do that?

D. W. Conn said:
Readings from Med Help, Neurological Journal of medicine, WebMD hint at the thought that AUTO SV can improve quality of sleep but that it treatment is still difficult.

Can you post those?

TIA for your reply.
Joe,

Let me go on record that I completely disagree with your docs opinion. ASV is "THE" treatment for Central apnea.

Quick little run down on how an ASV works.

Standard BiLevel ST PAP devices work on a pressure and timed breath cycle. Regardless of the patient airway compliance or minute ventilation. An ASV calculates the users Minute ventilation. Correct minute ventilation is what regulates the CO2 and O2 levels in the blood keeping a normal Ph balance. In the first few moments of placing the mask on from an ASV unit the ASV calulates a normal breath volume and respiratory rate. The MV (minute ventilation) is the target from then on. Rather than having a set number of breath per minute the ASV will adjust it's base pressure to over come the obstructive component in addition to adjust the inspiratory pressure to deliver a breath that will generate a volume to reach the target MV. If the target MV is falling short the machine will increase the pressure supported breaths to the point of delivering a non-patient triggered breath from time to time in order to reach the goal. Conversely of the users RR increases and the taget MV is calculating out to be exceeded the ASV will lower the amount of PS to keep the MV in the taget range.

I would like to know who this doctor talked to from the manufacture. THe ASV was designed for complex sleep apnea like your daughter has. Cheyne-stokes breathing and central apneas is the indication for ASV and that is exactly what ResMed and Respironics made this device for.

I have attached the guidelines for the use of ASV from Resmed to this note. I hope this helps and your doc pulls his head out of his ..... well you know what I mean. lol

Neal
Attachments:
Here's another resource that may be helpful.

http://sleephealth.tripod.com/10sa6.html
Let me go on record in saying that you Dr is wrong about the treatment of Central and complex sleep apnea the Resmed VPAP ADAPT SV and the Respironics Bipap ST were made for such a SDB. I like the Resmed the best that what we use in our Sleep lab. And let me state they work, if you need any info on them let me know. And if your Dr needs info also let me know but I will need his address and I will Email my rep for Resmed to see if they can follow up with your Dr.

Mike B RCP.psgt Clinical Specialist.
Dear Mike Burns thank you for your reply and advice, My daughter has now recently had her tracheostomy decannulated and her nippy 3 ventilator tweeked thgive herIPAP17 EPAP 8 and15 BPM but still has multiple drops in O2 at varying times during the night. She is ventilated via the full face mirage quatro. She can go as low as 72% but increases to 96% within 10 seconds the present vent seems like she issucking on a hair dryer, she recently had her co2 lvels and o2 levels assessed the average o2 overnight was 96 and her co2 averaged 6.4, the last blue lip central apnea triggered by a seizure was 8 weeks ago,I still remain convinced that the ASV is worth a try as her present vent is not stopping the drops in O2 saturation and apneas I would be grateful for further advice.

Mike Burns said:
Let me go on record in saying that you Dr is wrong about the treatment of Central and complex sleep apnea the Resmed VPAP ADAPT SV and the Respironics Bipap ST were made for such a SDB. I like the Resmed the best that what we use in our Sleep lab. And let me state they work, if you need any info on them let me know. And if your Dr needs info also let me know but I will need his address and I will Email my rep for Resmed to see if they can follow up with your Dr.

Mike B RCP.psgt Clinical Specialist.
joseph graham said:

...she recently had her co2 lvels and o2 levels assessed the average o2 overnight was 96 and her co2 averaged 6.4...

6.4 what? kPa or mmHg?

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