[tri-med] Re: Study and kira's recovery (update)

I don't know about the Gentamicin or Dilaudid but Ativan is on Becca's
'forbidden' list. Her Pulmonologist said that it would cause far more
problems. It is for statis seizures, he said it is something to do while you
wait for the ambulance but it would cause more problems than it would solve.
Sorry that was all the explanation I got.


Catherine, praying for Kira
Becca's mum (33, Trisomy 13 Mosaic)



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Yazmin castro
Sent: Thursday, March 27, 2008 4:59 PM
To: tri-med@xxxxxxxxxxxxx; trisomy10q@xxxxxxxxxxxxxxxx
Subject: [tri-med] Re: Study and kira's recovery (update)


The study that I had Kira on to prevent infection that I posted about was
stopped because I felt that it was making her tremble by  the Reglan. I
noticed it the next day the study began, but thought to be because she just
woke up as she sometimes does at home also. This trembling went on through
play time and that is very unusual for her. Me and my husband kept thinking
why could she be trembling that way. I kept telling the nurses but they
didn't seem too concerned until I told the doctor and asked him if there
were any new medications started on her recently and he told me no they were
all the same. My husband was the one that actually pointed out that it could
be the Reglan and till this day after 3 days of taking her off she has not
trembled. So for us it did not work. We also got news that she has an
infection in her blood and fungus in her throat because of the breathing
tube. We had already had two false alarms thinking that they were going to
 finally take out the tube. Hopefully soon, I am really concern about the
antibiotic, narcotic and sedative that she is taking. Has anyones child been
given Gentamicin, Dilaudid or Ativan?

Yazmin
Proud mother of baby Kira (18 months)partial trisomy 7p and trisomy 10q, and
she loves to talk.


----- Original Message ----
From: Yazmin castro <beaunkev@xxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx; trisomy10q@xxxxxxxxxxxxxxxx
Sent: Thursday, March 20, 2008 1:59:23 PM
Subject: [tri-med] Study and kira's recovery

I have more hope now, Kira is doing much better. She isn't trying to fight
the machine as much and her heart rate is getting steady. I also decided to
give the study a try, I read all the sideffects and risk and since kira has
been on reglan before, so  I was a little more comfortable. Her doctor also
told me that at anytime if my husband and I wanted to stop the study we can
do it at anytime. Also the other three drugs/protein (sorry don't have the
papers w/ me to name them) had almost no risk of sideffects so we are going
to give it a try and see how it goes. I'm guessing there is no other family
that was asked about this study.

Yazmin
Proud mother of baby Kira (18 months)partial trisomy 7p and trisomy 10q, and
she loves to talk.


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