Howdy all. My son Kaleb (16) started using a Palmonetic LTV950 at night a little over a month ago but we seem to be having difficulties getting the right settings or him used to it. He used a bi-pap about 5 yrs ago but stopped using it after his spinal surgery. Guess the rods sat him up straight and opened him up. Is there a vent that most would recommend for boys with DMD? Kaleb feels like the LTV 950 is forcing him to breath and I am concerned it could have an adverse affect more than help him. Any input would be welcomed.
Thanks,
Mark

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My son has used the LTV 800 for almost 8 years with a "sip" interface, but he uses it all day, and a v-pap at night. I think your settings are the problem--these non-invasive vents are designed to only give air as needed. Get back to your pulmonologist with your concerns. Are the settings something like a typical v-pap setting like 16/4? If they are more like 16/12 or somesuch that is too much like a c-pap and can cause CO2 retention which leads to the brain shutting down the breathing drive. Or, write a note to Dr.Bach at doctorbach.com--I have heard he does answer his e-mail. Maybe this website will help you know your options a bit better, but settings must be tailored to each guy of course: http://www.researchchannel.org/prog/displayevent.aspx?rID=4123&...
If your son is not comfortable on his vent it means it is not set right for him. My son is 28 and uses v-pap at night with nosemask, and the LTV all day attached to his wc and running off its batteries. Using this, he is able to work full-time and avoid a trach. Best regards, Anna.
My son uses a Newport HT50, but I agree with Anna that it's all about the settings. These things are very programmable:

The vent can be set to give breaths on demand or at a frequency (called a backup or support frequency) or a combination of both (which is how my son's is set up). It may be that the frequency (f) is set too high, so your son doesn't feel he has enough time between breaths, or that it's pushing too much air (pressure or volume set too high depending on what mode it's in), or pushing it too fast (inspiration time set too short). Also, the trigger pressure (Ptrig) may be too sensitive and it may think your son wants a breath when he doesn't. All these are settings you can work on with your pulmonologist.

Hope this helps,

Jeff
Hi Mark,
I would confirm what Ann and Jeff said and then just add a couple of additional thoughts. A sleep study might solve the proper settings question for nocturnal ventilation with a Bi-pap vent. If he has not had one it would really help to give the Pulmonologist good data. My son uses a Respironics Bi-pap/AVAPS vent at night which works very well. There are other companies out there as well. If your sons Pulmonologist is not as familiar with DMD and the respiratory care there is a care concensus document that he/she can refer to or I know that there are at least a couple of Pulmonologists that would be happy to consult with you/your current Pulmonologist. If you have trouble finding the care information let me know, I would be happy to help you.
Regards,
Katherine

At the moment I'm using an LP10 vent which has been great - although becoming obsolete. Look on my blog here on my journey of a potential new vent.

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