[tri-med] Re: Nestle Additions/Weight Gain-Stacie

Hey Stacie,
 
We have Genevieve on the Nestle Additions(2lb 1.4oz can, $12, got it thru a 
Marsh pharmacy, alot of pharmacies couldn't get it) now, despite the 
nutritionist being against it, it has been used primarily on trauma/burn 
patients and this past year toted as being excellent for kids to get the weight 
on. It is a bit of prep work, you boiling the water and add the powder, has to 
be 160 degrees because there is an activator in it that makes it work, that is 
what the dr told us yesterday, then add that concoction to her foods, I have 
tried it and no flavor, reminds you of watery wallpaper paste.
 
Yesterday I talked to the dr too about Periactin which is an appetite enhancer 
that alot of anorexics are given and he said he has used it before on failure 
to thrive kids too, but wants to see if Nestle Additions works because no side 
effects. I also picked his brain on efas, the MCT oil you talked about below, 
thyroid/metabolism testing which he said he has it wrote down and after 
Christmas get started. She is getting weighed again Monday, but this past week 
gained 1 oz from week before.
 
So she is 17 lbs, 9 oz and 30" long-- yeah they are looking at the weight to 
height rather than age chart. She is 1 week shy of 17 months. She is in 6-9 
months clothes as 12 months hang on her, especially jeans, etc...she has no 
belly, no muscles, but trying.... oh I also asked about the T- chart and he 
said that because Genevieve doesn't have T-18 it wouldn't be accurate for her. 
After he said that I thought to myself, then does each Trisomy need their own 
chart? Each child is different and on no scales for growth. I know my thoughts 
keep wondering back to her weight among other issues of course, I guess I don't 
understand a doctor's logic at times....
 
She was on B6 through her neurologist and it worked awesome. She got off 
Trileptal which made her sleepy and no appetite, going on B6(50 mg daily) her 
appetite increased big time, and like she 'blossomed" her therapists all said. 
Well then she had 2 seizures so he put her on Tegretol, he was never keen on 
giving her the B6, but did it to stop my whining. She sees him right before 
Xmas so I will whine again...  I did look at a bunch of information on B6 and 
it is wonderful for what it can do for your body. I guess the most amazing 
story I read on it was the Gov of Minn, Jesse Ventura, their oldest daughter 
was born with a brain that had "holes like swiss cheese" was seizing 100's of 
times per hour,  and they didn't expect her to make it, so a nurse recommended 
B6, they gave it to her, seizures stopped and today she is fine and 20 yrs old.
http://www.jadefoundation.org/jstory.htm. 
 
Please Stacie let me know how the oil goes for Hailey. That is awesome she 
gained a pound in one month. What formula is Hailey on? They put Genevieve on 
Neosure Advance and we also did the vegetable oil for more calories. With her 
Pediasure now they said we could add whipping cream, haven't tried it yet 
because not sure if its that thick she could get it out of preemie nipple she 
still uses.
 
By the way I wanted to tell everyone "Thanks" too for all the support, I 
haven't had time to reply to everyone, but I'm trying to keep up with the 
posts, Faith has some bug since Tuesday, I got it this a.m. and Genevieve 
started running a fever this afternoon. So have us all Ibuprofened... Florida 
weather sounds awesome right now, instead of 29 with flurries and windchill 8.
 
Take Care Stacie and look forward to hearing more on Hailey's development....
 
~Pamela- who is headed off to take a nap-mom to Savannah 15, Faith 5 days shy 
of 5 yrs old & Genevieve 8 days shy of 17months old (46,XX, dup inv ins 
5(q31.3; q35.1q34), missed amnio) 


Date: Fri, 12 Dec 2003 20:24:22 -0800 (PST)
From: Stacie 
Subject: [tri-med] Re: Nestle Additions/Weight Gain

Hi Pamela, haven't tried nestle additions- I'd like to hear more about it 
though. Hailey is just a small little peanut and only a month younger than 
Genevieve. Actually she weighs about half as much. Anyway, some of her docs are 
VERY concerned about her weight. And two (who are familiar with tri kids) are 
not (she's on the tri growth chart, but some bumbleheads look at a healthy kid 
growth chart & freak). She's put on a full pound in the last month. I think 
it's mostly "her timing & growth rate", but I've tried adding powder to her 
formula, to take it from the 24 calorie that it is and making it 30 calories. I 
got the all clear today to add MCT oil- I'll have to let you know about that. 
I'm curious about the B6, what can you tell me about that? BTW, I've refused 
the tube also, unless there is just no other way- I don't think it "sounds 
horrible for a mom". I understand completely. 

Stacie

Mom to Alex (3), Hailey T-18 (15 months), and Zachary (3 months). Wife to 
Kevin. Living in Port St. Lucie, FL



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