[tri-med] Re: tube feedings and seizures

Hi Sharon,

Elanor has worked up to 110cc of pediasure at 150cc an hour.  Her overnight
feedings are 570cc at 61cc an hour.  She has had varying rates since she was
a baby, to help with reflux.  She got a gtube and fundoplacation when she
was 11 months old, which pretty much took care of her reflux.  She used to
gag and spit up quite a bit, so we fiddled with the rates and doses until we
found a rate that suited her.  When we wanted to increase rate or dose, we
just increased in small increments (5cc or so) until we either found numbers
we were happy with or had to back off a touch because she couldn't handle
it.  We found that the feedings are a matter of getting the right amount of
calories (and water) the most comfortable and convenient way possible; there
is no right or wrong way!

I hope that was some help!


Jennifer Vanderbeek
Boise, Idaho, USA
Mom to Arwen (10); Elanor (8), Trisomy 18; Caregiver to Joe (29), Cerebral
Palsy; and Wife to Andrew (I'm not telling how old he is because he's
younger than me!)

Check out Elanor's CaringBridge site at:

http://www.caringbridge.org/visit/elanoranne 



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of SHAMOND73@xxxxxxx
Sent: Friday, March 28, 2008 9:46 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: tube feedings and seizures

i have 2 questions i have been meaning to ask, 
 
(1) for anyone whose child has seizures now, did they first start  having 
those seizures after 1 years old, or did they start earlier, when was  their

first sezure??........
 
 
(2) Jason is now feeding well on the feeding tube on a speed of 120ml hr,  
that is 4 oz an hour, so to get 6oz takes an hour and a half. he does this
4x a  
day. When he is feeding at 150ml hr, which is 5 oz an hour, he is refluxing,

at  this current very slow speed he is doing (fingers crossed) very well. i
am 
so  pleased and happy. 
 
 
At night, he gets the 25-30ml an hour super slow overnight feeding, but 4x  
during the day he is having a feed at the 120ml hr, and i was wondering if  
anyones else child started daily feeds so slow like this, or still has daily

feeds like this, or was able to speed it up over time ??..............
 
 
Thanks,
Sharon


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