Re: dysphagia (very dyspraxic swallow) needing g tube to thrive

[Guest guest]

I found this book link which may help you

http://books.google.com/books?hl=en & lr= & id=PqysNoP0c8cC & oi=fnd & pg=PT11 & dq=%22whe\

y+%22+child+gastroenterologist+malnutrition & ots=Zbbh0ALyPt & sig=ZSa2Q6fpxiFNtJJ1k\

1NtmTPvBh8#v=onepage & q= & f=false

I looked up the ingredients of the Pediasure and am not at all impressed with it

http://abbottnutrition.com/Products/pediasure

If you are using something like Pediasure which doesn't look particularly

healthy or natural to me..I just wanted to throw it out there to why not share

the nutriiveda which is natural, nutrient dense with your child's doctors to see

what they think of you trying it with him once a day to provide easily

digestable isolate protein and nutrition? You can find ingredients for the

nutriiveda at http://www.pursuitofresearch.org under nutriiveda. Here's a

direct link to the nutritional panel of the chocolate

http://www.up0.net/content/666799/Choco_NutritionFacts.pdf

and the vanilla

http://www.up0.net/content/666799/Vanilla_NutritionFacts.pdf

You can share my son Tanner and 's story and there may be a few others at

this point to mention. I'd be happy to have them speak to the professionals

that work with Tanner and I know that Mel's mom Robin feels the same.

I know the ayurvedic component is all new to most in the West- most of us in

this group -but some of the ingredients are good to point out to a child like

yours who is having trouble eating, and this may help.

I just posted earlier about isolate protein, and even though many will use the

nutriiveda to lose weight, my mother who was too thin and didn't eat right or

enough has gained weight on the exact same product and feels incredible " I don't

know where all this energy is coming from " She's also the one on a GFCF diet

which is part of her problem in that there's so little she enjoys or is able to

eat anymore -so this makes her happy.

Here are articles I just found on the whey isolate protein you may find of

interest.

http://www.innovatewithdairy.com/SiteCollectionDocuments/GutHealth.pdf

http://www.sbaf.org.br/_artigos/200508_WheyProtein.pdf

And an interesting article:

Supplement: The Use of Whey or Skimmed Milk Powder in Fortified Blended Foods

for Vulnerable Groups: A Literature Review

The Use of Whey or Skimmed Milk Powder in Fortified Blended Foods for Vulnerable

Groups1,2

Camilla Hoppe, Gregers S. Andersen, Stine sen, Christian Mølgaard, Henrik

Friis, Per T. Sangild and Kim F. sen*

Department of Human Nutrition, Faculty of Life Sciences, University of

Copenhagen, DK-1958 Frederiksberg, Denmark

* To whom correspondence should be addressed. E-mail: kfm@....

Fortified blended foods (FBF), especially corn soy blend, are used as food aid

for millions of people worldwide, especially malnourished individuals and

vulnerable groups. There are only a few studies evaluating the effect of FBF on

health outcomes, and the potential negative effect of antinutrients has not been

examined. Different lines of evidence suggest that dairy proteins have

beneficial effects on vulnerable groups. Here we review the evidence on the

effects of adding whey or skimmed milk powder to FBF used for malnourished

infants and young children or people living with HIV or AIDS. Adding whey or

skimmed milk powder to FBF improves the protein quality, allowing a reduction in

total amount of protein, which could have potential metabolic advantages. It

also allows for a reduced content of soy and cereal and thereby a reduction of

potential antinutrients. It is possible that adding milk could improve weight

gain, linear growth, and recovery from malnutrition, but this needs to be

confirmed. Bioactive factors in whey might have beneficial effects on the immune

system and muscle synthesis, but evidence from vulnerable groups is lacking.

Milk proteins will improve flavor, which is important for acceptability in

vulnerable groups. The most important disadvantage is a considerable increase in

price. Adding 10–15% milk powder would double the price, which means that such a

product should be used only in well-defined vulnerable groups with special

needs. The potential beneficial effects of adding milk protein and lack of

evidence in vulnerable groups call for randomized intervention studies.

I do hope other parents have personal advice to share with you to help.

Best to you and your family!

=====

[Guest guest]

It is hard for me to write from my blackberry. Has you son had an evaluation

with someone that does oral motor therapy? The fact that you tell me he is

still drooling is and indicator to me that his mouth muscles are not working

properly. This willaffect his ability to eat because he may not be able

to chew properly

My son had such a bad drool that the front of his shirt would be soaking every

day. He has been receiving oral motor therapy since june and he still has a

alight drool but not much and the food he eats is so much better. My son would

eat a lot but also almost all soft things like yogurt and applesauce. Now he

can even properly chew a hamburger his speech production has really

improved. Its hard for me to write from my phone but if you have more

questions feel free to write again or email me directly

Sent from my Verizon Wireless BlackBerry

[ ] dysphagia (very dyspraxic swallow) needing g

tube to thrive

Hi there.

Well, it's been a while since I've written. I'm in NH and have a 6 year

old son with many health issues... global dyspraxia, dysphagia, dysarthria,

epilepsy, adhd, hypotonia, irregular heartbeat, acid reflux, and hiatal hernia.

We have been having a horrible time getting my son to eat...not because he is

picky, per se, but that he has such a hard time chewing some things, gags on

some things, gets worn out from eating, can't sit still with the adhd, has to

have all liquids thickened, that even though we have struggled and struggled

making each and every meal and " user friendly " as possible, he has not gained

weight in two years. His bmi is about 1%. I am so sad over this.

We have been discussing the possibility of a g-tube for about a year and have

tried periactin to try to boost his appetite. We have given him pediasure twice

a day for two years ... and even with that, he hasn't gained weight. We just

met with his gastroenterologist and his nutritionist yesterday and decided that

the g-tube is the only way, at this point, to get our little one the nutrition

that he so desperately needs. It breaks my heart that it comes to this, but it

also makes me happy that there is some way to help him.

Has anyone out there gone through this? If so, can you share your experiences

with me ... good or bad. I really would like to hear about it, so that I have

some idea what to expect...from a parent's perspective.

Thanks so much...and Happy Holidays to all!

[Guest guest]

Thank you very much for all that information ...

Now, to chew on all of it!

Happy Holidays!

[ ] Re: dysphagia (very dyspraxic swallow) needing g

tube to thrive

I found this book link which may help you

http://books.google.com/books?hl=en & lr= & id=PqysNoP0c8cC & oi=fnd & pg=PT11 & dq=%22whe\

y+%22+child+gastroenterologist+malnutrition & ots=Zbbh0ALyPt & sig=ZSa2Q6fpxiFNtJJ1k\

1NtmTPvBh8#v=onepage & q= & f=false

I looked up the ingredients of the Pediasure and am not at all impressed with it

http://abbottnutrition.com/Products/pediasure

If you are using something like Pediasure which doesn't look particularly

healthy or natural to me..I just wanted to throw it out there to why not share

the nutriiveda which is natural, nutrient dense with your child's doctors to see

what they think of you trying it with him once a day to provide easily

digestable isolate protein and nutrition? You can find ingredients for the

nutriiveda at http://www.pursuitofresearch.org under nutriiveda. Here's a

direct link to the nutritional panel of the chocolate

http://www.up0.net/content/666799/Choco_NutritionFacts.pdf

and the vanilla

http://www.up0.net/content/666799/Vanilla_NutritionFacts.pdf

You can share my son Tanner and 's story and there may be a few others at

this point to mention. I'd be happy to have them speak to the professionals

that work with Tanner and I know that Mel's mom Robin feels the same.

I know the ayurvedic component is all new to most in the West- most of us in

this group -but some of the ingredients are good to point out to a child like

yours who is having trouble eating, and this may help.

I just posted earlier about isolate protein, and even though many will use the

nutriiveda to lose weight, my mother who was too thin and didn't eat right or

enough has gained weight on the exact same product and feels incredible " I don't

know where all this energy is coming from " She's also the one on a GFCF diet

which is part of her problem in that there's so little she enjoys or is able to

eat anymore -so this makes her happy.

Here are articles I just found on the whey isolate protein you may find of

interest.

http://www.innovatewithdairy.com/SiteCollectionDocuments/GutHealth.pdf

http://www.sbaf.org.br/_artigos/200508_WheyProtein.pdf

And an interesting article:

Supplement: The Use of Whey or Skimmed Milk Powder in Fortified Blended Foods

for Vulnerable Groups: A Literature Review

The Use of Whey or Skimmed Milk Powder in Fortified Blended Foods for Vulnerable

Groups1,2

Camilla Hoppe, Gregers S. Andersen, Stine sen, Christian Mølgaard, Henrik

Friis, Per T. Sangild and Kim F. sen*

Department of Human Nutrition, Faculty of Life Sciences, University of

Copenhagen, DK-1958 Frederiksberg, Denmark

* To whom correspondence should be addressed. E-mail: kfm@....

Fortified blended foods (FBF), especially corn soy blend, are used as food aid

for millions of people worldwide, especially malnourished individuals and

vulnerable groups. There are only a few studies evaluating the effect of FBF on

health outcomes, and the potential negative effect of antinutrients has not been

examined. Different lines of evidence suggest that dairy proteins have

beneficial effects on vulnerable groups. Here we review the evidence on the

effects of adding whey or skimmed milk powder to FBF used for malnourished

infants and young children or people living with HIV or AIDS. Adding whey or

skimmed milk powder to FBF improves the protein quality, allowing a reduction in

total amount of protein, which could have potential metabolic advantages. It

also allows for a reduced content of soy and cereal and thereby a reduction of

potential antinutrients. It is possible that adding milk could improve weight

gain, linear growth, and recovery from malnutrition, but this needs to be

confirmed. Bioactive factors in whey might have beneficial effects on the immune

system and muscle synthesis, but evidence from vulnerable groups is lacking.

Milk proteins will improve flavor, which is important for acceptability in

vulnerable groups. The most important disadvantage is a considerable increase in

price. Adding 10–15% milk powder would double the price, which means that such

a product should be used only in well-defined vulnerable groups with special

needs. The potential beneficial effects of adding milk protein and lack of

evidence in vulnerable groups call for randomized intervention studies.

I do hope other parents have personal advice to share with you to help.

Best to you and your family!

=====

[Guest guest]

Yes, he is working with a couple of people that are doing some oral motor

therapy with him. He has so many issues going in that it's hard to squeeze them

all in!

Fortunately, his drooling has almost been corrected. He used to soak the front

of his shirt too! It was so sad that a 4 year old seemed to need a bib just to

catch drool. Now, we're able to give him a cue or say " suck it up " and he will.

[ ] dysphagia (very dyspraxic swallow) needing g

tube to thrive

Hi there.

Well, it's been a while since I've written. I'm in NH and have a 6 year

old son with many health issues... global dyspraxia, dysphagia, dysarthria,

epilepsy, adhd, hypotonia, irregular heartbeat, acid reflux, and hiatal hernia.

We have been having a horrible time getting my son to eat...not because he is

picky, per se, but that he has such a hard time chewing some things, gags on

some things, gets worn out from eating, can't sit still with the adhd, has to

have all liquids thickened, that even though we have struggled and struggled

making each and every meal and " user friendly " as possible, he has not gained

weight in two years. His bmi is about 1%. I am so sad over this.

We have been discussing the possibility of a g-tube for about a year and have

tried periactin to try to boost his appetite. We have given him pediasure twice

a day for two years ... and even with that, he hasn't gained weight. We just

met with his gastroenterologist and his nutritionist yesterday and decided that

the g-tube is the only way, at this point, to get our little one the nutrition

that he so desperately needs. It breaks my heart that it comes to this, but it

also makes me happy that there is some way to help him.

Has anyone out there gone through this? If so, can you share your experiences

with me ... good or bad. I really would like to hear about it, so that I have

some idea what to expect...from a parent's perspective.

Thanks so much...and Happy Holidays to all!