[tri-med] Re: sleep apnea in Tri-18 babies

----- Original Message ----- 
From: "Kelly Rosberg"
>I am going to ask for any help available out there! I need collect
> information about any infants that have been on a cpap or bi-pap machine 
> at
> home.

Kelly,
Have they tried Amos on medication to help the apneas? Caffeine or 
theophylline often helps our kids, even beyond the normal age where it helps 
other kids. It wont help for obstructive apneas, but if the apneas are 
central in origin then they have been successfully treated with medication 
in our kids because sometimes they are simply apneas of prematurity.

Alex was a little older when he went onto C-PAP and then Bi-PAP, however it 
was prescribed for him in the US. I also understand where your doctors are 
coming from in saying that they can't give C-PAP or Bi-PAP for babies at 
home. There are risks but I personally think that they can be got around.

Alex's Bi-PAP is the REM Duo by Nellcor Puritan Bennett (now Mallenkrodt). 
It was chosen because Alex hypoventilates (breathes VERY shallowly) and this 
was the most sensitive model/brand. That is it picks up even his most 
shallow breath and doesn't interfere only supplements. Its not normally used 
here in Australia because the company doesn't have the contract with our 
health department but I think it should be because its far superior to any 
other Bi-PAP we tried here as far as sensitivity and functionality.

It was prescribed jointly by Dr Jeff McDonald (I think that was his name) 
and Dr Carole Marcus at John Hopkins University Hospital. Dr McDonald is (or 
at least was) a respiratory medical advisor to SOFT USA.

In fact when we got it home and actually set it up I found it too sensitive 
and had to turn the sensitivity down.

This sensitivity is in part why they don't like to prescribe them for 
babies. Unlike a ventilator which controls every single aspect of the breath 
that the person makes C-PAP and Bi-PAP don't, therefore there is the risk 
that it could fail, or that the person could die whilst still "breathing". 
Plus Bi-PAP doesn't have tidal volume or the bells and whistles that a full 
ventilator has eg capnic monitoring. All this means that it could fail 
whilst the child is using it and technically the doctor prescribing it could 
be held liable.

My answer to that with the doctors here was to sign a release, stating that 
I understood the risks - and there was a mile of them, from blowing holes in 
his lungs (has happened to some babies) to power failures, dying from CO2 
poisoning etc etc. and absolving the doctors and hospital from any 
responsibility should Alex die or suffer permanent injury whilst using the 
Bi-PAP.

To minimise the risks to Alex we added full monitoring to the regime. (a 
monitor that kept and eye on all parameters including capnia (CO2) levels, 
O2 levels, respirations etc.

In the end it was the full monitoring that saved his life. The Bi-PAP kept 
him breathing and brain injury to a minimum but the monitoring allowed us to 
eventually work out why he was having apneas in the first place. Once we 
worked that out we could get to and treat the cause of the problem - in 
Alex's case it's something called Shapiro's Syndrome. No cure but the 
treatment is definitely refined and much better for the master in the long 
run.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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