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Aug 05, 2008
carmarhal
Adoptive mommy of Micah 2/26/06, Caleb, 3/03/07 (26 wk preemie, BPD, Subglottic stenosis, GERD, dysplagia, FTT, DD, texture aversion, ST, Feeding Clinic, PT, OT, Prevacid 30 mg/day, Pediasure & ground table foods), Ethan 2/6/08 (28 wk preemie, BPD, dysplagia, GERD, Prevacid 15 mg/day, Enfacare 22 cal., ST for feeding)
"Force" feeding?
Caleb is 14 months adjusted, diagnosed with GERD in the NICU. He had a severe gag reflex up until about 2 months ago, but he still has not much interest in eating. He hasn't yet learned to chew, and we don't know if it's CP or sensory issues (not wanting to chew on his gums). He had trouble gaining weight all winter, because every time he got sick it aggravated his reflux and BPD, which put him in the hospital for about a week every month. He's managed to stay out of the hospital since the end of May, but he was 3 ounces shy of gaining a pound from the end of May to the end of June, and only gained 1 ounce from the end of June to the end of July! The feeding clinic put him on Pediasure in June, but he doesn't drink as much as he used to, so he's gotten constipated. Now I have to force him to drink during meals and make high calorie drinks for him 3 times a day. However, my main concern with him is that he has never had any real interest in food, and after a few bites I often have to open his mouth to put the food in. He'll swallow it once it's there, but he just won't open his mouth for it. We've been using a food mill to grind his food for a few months now, adding a little texture to hopefully help him learn to chew (per the feeding clinic), and it's definitely not difficult food to eat. He usually just swallows it whole, anyway. But he'll squirm and whine and moan when I make him eat, and then my mother-in-law has to chime in and say, "You know, when my kids were young their doctor told me 'They won't starve to death. When they get hungry enough, they'll eat.'" Well, thank you very much! However, your children were not preemies, nor did they have GERD, texture aversions, possible CP, etc., etc., etc.!" It's so frustrating to have people think I'm being mean when I'm just trying to do what he needs! He had a cognitive eval done last week that put him at an 8-month-old level. I wonder how much of that is caused by his not eating! I've started keeping a log of what he eats all day long, figuring out calories and trying to add calories to everything. I wonder if there's a product to add calories without adding bulk, like Thick-It thickens without changing the flavor. That would be wonderful!
Aug 05, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Yes there is a product that adds clas without adding too much bulk There are 3 as a matter of fact..LOL They are..Benecal, Duocal, and Polycose. Each is made a litle differently from the others.

He may be taking in less pediasure because it is a 30 cal. formula verse what he was taking before. The more dense is harder to pass. Hence some of the not wanting to eat issues.

And I agree children will most certanlly starve themsleves Jedd would have bene mightly glad to do that..HUGE HUGS from a Mother who totally understands!!!!!

There are oral motor tools you can use to hlep ake the muscles in the mouth stronger. I hope the clinic can help you out a little more. I have called ours between visits before to get input. They are awesome, we love ours.
Aug 05, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
MILs can be fun can't they! however, that is exactly what my pediatrician said to us. I disagree with him, of course, but my dh is sick of me switching docs since they are apparantely more knowledgeable than I. Does he do straight purees at all? can he pick up food at all? i'm surprised the feeding clinic didn't refer you to a nutritionist.. have you tried that route?

has he been evaluated by a neuro? my son has tone issues but they have not diagnosed him with CP yet...
Aug 05, 2008
carmarhal
Adoptive mommy of Micah 2/26/06, Caleb, 3/03/07 (26 wk preemie, BPD, Subglottic stenosis, GERD, dysplagia, FTT, DD, texture aversion, ST, Feeding Clinic, PT, OT, Prevacid 30 mg/day, Pediasure & ground table foods), Ethan 2/6/08 (28 wk preemie, BPD, dysplagia, GERD, Prevacid 15 mg/day, Enfacare 22 cal., ST for feeding)
Okay, I called his nutritionist at the feeding clinic, and she said she'll give me some duocal samples at his next visit and if we like it she'll call it in to our medical supplier. She thinks we should wait a couple more weeks and see if my methods of adding calories are working. He will eat purees, but he's still working on the finger feeding. His PT did a Bayley motorscale assessment on him on July 10th, and he scored a 7 in both fine and gross motor. She has said he's low tone all along, but this is pretty darn low. The mean is 100! Nobody has mentioned a neurologist yet, but maybe I should ask. I'm always surprised when I ask what I figure is a silly question and they're like, "Oh, yeah, maybe we should try that"! By the way, when I say I have to open his mouth, I don't mean that I'm wrestling it open! He doesn't fight, and usually just putting my thumb on his chin will be enough.
Aug 05, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Gald they will give you samples. I love when the nurses give you stuff to try for free! As far as the finger feeding, it is perfectly age appropriate to have mastered the "pincer grasp" as late as 14 mo. and, given that your son is 14 mo. adjusted he is a little "delayed" but not by much. He scored a 7 out of 100? I'm confused at how this diagnoses him with low tone? at any rate, low tone babies (or even mixed tone) typically have reflux so that could be.

do you think he could be refusing the spoon/bottle because he wants to be more independent even tho he can't be? i'm having a real struggle with spoon feeding my son right now but thankfully he'll still take the bottle.
Aug 06, 2008
carmarhal
Adoptive mommy of Micah 2/26/06, Caleb, 3/03/07 (26 wk preemie, BPD, Subglottic stenosis, GERD, dysplagia, FTT, DD, texture aversion, ST, Feeding Clinic, PT, OT, Prevacid 30 mg/day, Pediasure & ground table foods), Ethan 2/6/08 (28 wk preemie, BPD, dysplagia, GERD, Prevacid 15 mg/day, Enfacare 22 cal., ST for feeding)
I guess I wasn't thinking correctly about the test scores. They only mean that he is delayed in gross and fine motor skills. She has always said he's low tone, so I just connected the two. As far as the test scores, 100 is the average score, or the middle score. So 7 is very low. BTW, why can't I make more than one paragraph in my posts? I see other people doing it, but my posts publish as one long paragraph.
Aug 06, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
ok, i understand now. have they refered him to any kind of PT for the tone? Coy is high tone. (well, from what they can see) i think he might be mixed tone since his reflux is so bad, kwim

YOu have to put a code in @ the end of the paragraph.

the code is inside the quotes. "

"

some people use another code but this is the one that works for me. HTH
Aug 06, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
oops, that didn't work.

you type < br > < br > without the spaces
Check with your
doctor first!