Re: Oscillator/Diaphragmatic Pacing

annette (nete1(AT)midwest.net)
Wed, 20 Aug 1997 09:48:16 -0500

At 08:04 AM 8/20/97 -0600, you wrote:
><First, I'm still perplexed about the vent your daughter is using. I thought
>that oscillating vents were only used by infants, or someone one step away
>from ECMO. ????? Can you fill me in why a positive pressure unit will
>not work?>
>
>Background: Kristen was not diagnosed with CCHS (Congenital Central
>Hypoventilation Syndrome) until she was 2 1/2 years old. At that time it
>seemed that she only needed ventilatory support during sleep. She was like
>a typical pre-schooler in every other way. Kristen also has a very
>atypical mix of Congenital Heart Defects, SEVERE allergies to all
>antibiotics, and a mix of subtle yet significant speech and fine motor
>skill delays. From the literature searches I'd completed I know it was
>possible to ventilate young children noninvasively. With noninvasive
>ventilatory support Kristen would have minimal infection risk, minimal self
>esteem issues and no additional stresses on poor speech (oral) and fine
>motor skills. Also considered was the knowledge that we were also
>parenting another child with significant care needs and the lack of nursing
>support. We opted for negative pressure ventilation as it is the only
>system with over 50 years of proven success and minimal morbidity. Kristen
>tolerated the system and it proved to effectively ventilate her. We did
>trial BiPAP for 9 months, tandem with the Port-a-lung/NEV 100, but she
>hated it, it was difficult to effectively ventilate her and she developed
>chronic sinus/ear infections that were very difficult to treat. It became
>apparent about one year ago that Kristen needed some level of daytime
>ventilatory support to meet her needs as she became more active. Since the
>Port-a-Lung is so restrictive we explored the other negative pressure
>options. LifeCare's cuirass has a track record of complications in
>children, so our physician wouldn't even trial it. I had learned of the
>Hayek Oscillator prior to it's FDA approval and explored that system as an
>option. Kristen trialed it last year and discovered it ventilated very
>effectively, has a secretion management mode "built in" and Kristen loves
>the way it feels when it ventilated. One clinical advantage to the
>oscillator is the positive effect oscillcation has on the aveoli during
>ventilation. Since using the combination of systems Kristen has had
>basically no lactic acidosis and has experienced marked improvement in her
>ability to function during the day. The other positive pressure systems
>all require a trach and in the CCHS population have demonstrated
>significant infections and soem lung injury. The downside to negative
>pressure systems is their size/weight (they are cumbersome). The Hayek
>Osciullator is awaiting FDA approval on a compact. lightweight model. That
>is what we wanted to use in school. We will be getting another big
>hospital based unit (at the request of the FDA) within two weeks for use at
>school. This will be swapped with the smaller unit in the Spring. We
>could obtain the smaller unit (at our expense) from London for use now, but
>we just can't afford it. We have not experienced any problems with radio
>frequencies affecting Kristen's vents since adding an UPS system in our
>home. Hope we don't see that happen at school.
>
>I have a current, comprehensive literature search and manufacturers'
>information on the two diaphragmatic pacing systems. They seem to serve
>the patients with spinal cord injuries very well. Children with CCHS,
>however, experience a very high mortality and morbidity rate. The
>hypothesis is that this is related to their normo-active state. They have
>greater infection exposure and a high component breakage rate. After
>reviewing it with our physician we decided that venting way that better
>option for Kristen. He's hoping that within several years, technology will
>catch up to our children's needs and then we'll be able to reconsider
>pacing as a safe option for daytime use.
>
>Ed- if you'd like a packet with all of the current information, send me a
>snail mail address.
>
>Cody- Negative pressure systems are actually significantly easier to use
>than the invasive positive pressure systems. The downside of negative
>pressure systems their size/lack of portability. In the past two years six
>CCHS children have been transitioned to negative pressure systems,
>decannulated and all are demonstrating a positive improvement in their
>lungs on chest x-ray.
>
>Like all things in life, everyone has unique needs which must be met in
>ways that are best for the individual. For some people trachs and positive
>pressure support systems are the best option, for others noninvasive
>support serves their needs effectively. I think it is unfortunate that
>many physicians neglect or fail to offer alternative ventilatory support
>options to all of the individuals that are candidates for those systems.
>
>
>
>
>
>Joanne Kocourek
>The University of Chicago
>jskocour(AT)midway.uchicago.edu
>
>
>
>

Joanne..
Could you send me some info regarding the Oscillator/Diaphragmatic Pacing?
Not for my own specific use, but for my thrist for knowledge regarding
respiratory ventilation options.

I have been reading your story with interest because not only being a vent
person myself, I was also a special education graduate student. This info
regarding your daughter's schooling has peaked my curiousity on how the
school is going to react to the vent, etc. and just how is will be written
up in the IEP.

I live in Southern IL so some attitudes regarding special needs children
are very backward in attitude. Being in a wheelchair myself there was many
times that I served as a disability advocate as I student taught in the
system. I made many friends, and yet many enemies who didn't understand
disabilities.

I am so happy to hear that you got the vent authorization in such a timely
manner. I know what the waiting game is like. Have been waiting for state
medicad approval on a power chair for over 2 mths. Been in the processes
for getting one for over a year. It get kinda frustrating.

Take care...

Annette Hanna
nete1(AT)midwest.net