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

How fortunate you figured out what the trembling was from.
Claire had ativan once for seizures that were so severe her O2 dropped to 0
a few times... it pulled her out of that.
She hasn't needed it since (thank goodness).

Debbie, mom to Claire (T18)

On Thu, Mar 27, 2008 at 5:59 PM, Yazmin castro <beaunkev@xxxxxxxxx> wrote:

> 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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-- 
Sleep is for Pansies.

Faith sees the invisible, believes the incredible and receives the
impossible!
If you want the rainbow, you gotta put up with the rain.
Patience and Persistence - keys to raising children.


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

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