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

----- Original Message ----- 
From: "Jocelyn"
> She was a tiny infant when she first went on to CPAP, so it IS
> POSSIBLE and don't let them tell you otherwise.

It never ceased to amaze me how different their attitudes were just in the 
few years between Alex and Tess.
Before the T-18 diagnosis they had no problem putting Alex on PAP and even 
discussed a trach with me.

Once Alex was diagnosed with T-18 though I had to fight tooth and nail to 
get them to let him stay on C-PAP / Bi-PAP because they were convinced that 
there is no way it would help a child with T-18 and that Alex was going to 
die anyway. It was the same with Taryn, they wouldn't even consider it, do a 
study or even recommend monitoring. Taryn of course died from an apnea.

The letters that Dr McDonald and John Carey wrote to the Kid's hospital were 
multiple and cited case after case of kids with T-18 being successfully 
treated with C-PAP / Bi-PAP. Much to the doctors disgust here because he 
kept telling me how far behind Australia the Americans were with PAP.

Then Tess came along and it wasn't too bad at all for you guys, Shari also 
had absolutely no problem. I am SO glad that that particular attitude is 
better.

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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