<I have a question...does the cuirass assist in resting the tired muscles
used to breathe as the vent does? > Yes, ventilation using a negative
pressure system with a cuirass DOES assist in resting tired muscles.
Negative pressure systems DO ventilate effectively.
I believe there are two negative pressure systems on the market today. The
LifeCare (now Respironics) System: the NEV 100 in combination with any of
the delivery systems and the Hayek Oscillator with a very light weight
cuirass. Our daughter uses BOTH systems. Kristen has been in a
Port-a-Lung/ NEV 100 system for nocturnal use for 4 years and uses a Hayek
Oscillator during the day for 1-2 hours. We added the Hayek when it became
apparent that she needed respiratory muscle "rest" or "assistance" to blow
off CO2 and increase O2 during the day. Since adding the Hayek she has had
marked resolve of her daytime symptomatology. We selected the Hayek for
daytime use for several reasons: future portability, lightweight cuirass,
freedom of movement while using system, tolerance, wide range of cuirass
sizes.
Negative pressure ventilation has been in use for approximately 50 years
and has a very successful track record. The greatest risk with negative
pressure is obstructive apnea so candidates for the system must be chosen
carefully. In recent years several of the children with CCHS have been
transitioned for trachs to negative pressure systems successfully. The
cost savings is guesstimated to be between $30,000 and $50,000 annually.
The real positive for our Kristen is the low infection risk when compared
to invasive ventilation. She has significant antibiotic allergies so
infections always pose a big problem. If Kristen is truly typical of the
surviving children with CCHS she will need lifelong ventilatory support and
we hope to continue to use some negative pressure system.
Joanne Kocourek
The University of Chicago
jskocour(AT)midway.uchicago.edu