Re: Finally Eating! Need Help!

February 18, 2006

Hi Everyone,

My son, , will be 9 on May 8, is finally eating, however, he is only

eating yogurts and puddings. The OT is now slowly introducing him to the

next texture (smooth but slightly lumpy, such as pureed foods in the blender

(the Magic Bullet is amazing for pureeing foods!). Anyway, after he began

taking in approximately 800 calories in yogurts and puddings, I can't

interrupt his momentum by saying he needs his tube because all he is eating

is yogurt and pudding, you know what I mean?

Anyway, introducing a new food he is not use to is frightening for him and

needs to be done in therapy and then once he is very comfortable, he will

eat that anywhere. My question is, do any of you adult CHARGERS or your

kids live on puddings and yogurts? He eats that creamy Yoplait which is 190

calories and puddings made with whole milk topped with whipped cream.

One good thing is he is about 10 lbs overweight, so this was a fantastic

time to cut the tube feeding. I feel fortunate we got him very chunky to be

able to do this. He still gets 500 cc at night of a very high calorie

formula (Peptamen 1.5), so it isn't like he isn't getting " nutrients " . Are

there any other foods you guys know of that have that smooth yogurt or

pudding consistency or foods that puree up to that by adding this and that?

He likes things very sweet, but I want him to get use to other things. I

tried carrots mixed with cream and added some brown sugar, and the

consistency seemed smooth, but it was such a different food that he became

apprehensive and that fear came back. We must go slowly not to set him

back.

Any input you guys have is greatly appreciated. I just never thought I'd

see this day come (9 years of never eating) and don't want to spoil it

because this is all he can eat right at the moment. We have to start

somewhere. I mean, he goes all day without having the tube now. This is

such a miracle.

Debbie Matasker

's walks

Hi again,

I also meant to share re. 's improved walking skills!

He is 28 months now and has been using a K walker outdoors since about

October. He is getting really good with it, lifting it up and down kerbs,

steering etc...

Then last week suddenly he got more confident walking around our house

independantly. He has started to stroll on his own between rooms downstairs.

It was so funny the first time I was in the kitchen and saw him walk around

the corner into the room on his own! It was like he was a " proper toddler "

all of a sudden!! So we are pretty pleased with him. Using the frame

outside seems to have helped with his balance too.

Of course, pride came before a fall. And yesterday, head met pavement in a

walking frame malfunction! Misjudged a kerb height. A bruise and first

cut/grazed forehead followed!!

Mum (ME!) felt very very bad for not catching him in time. But less than an

hour later he was pointing frantically to the front door to go out walking

again so it didn't put him off! He has also got a new favourite word,

prompted by his desire to go out walking ALL the time. He stands at the

front door and shouts Open!! Open !! Open!! But it comes out like

" OOOOOOOO-PEN " .......!!

What a star! Sorry to brag, you gotta sometimes!!

is (Mum to , 2, UK)

February 19, 2006

Debbie,

This is so encouraging. Jack is 9 in July and still tube fed He will

have little tastes of smooth soup, yoghurt etc but nothing like enough. He is

on

1500cal a day of Nurtini Energy multifibre (1.5cal per ml).

Does drink water etc during the day and if so how much? We currently

give him 1250ml of water daily (sometimes more) on top of his Nutrini.

Good luck with the oral feeds.

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

February 19, 2006

In a message dated 19/02/2006 13:15:04 GMT Standard Time,

matasker@... writes:

can't drink water, only sips. He is still aspirating thin liquids,

they just go down way too fast. We give him 500 cc of water a day by tube.

You may be giving Jack too much water if he is getting 1500 calories, that

is what gets. His GI cut the tube for his day and night feed but

replaced those fluids with water. Still he only needs 500 cc of water + 500

cc of formula at night + about 760 calories eaten during the day.

Debbie,

Jack's nephrologist & Paed want him on lots of fluids to help reduce the

occurance of kidney stones so that's why he is having so much water. He is also

on duiretics and low salt diet for the same thing I don't know how on

earth I would get all that fluid into him if it wasn't for the g-tube.

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

February 19, 2006

a godo a start as any

>

> Debbie,

> This is so encouraging. Jack is 9 in July and still tube fed He will

> have little tastes of smooth soup, yoghurt etc but nothing like

> enough. He is on

> 1500cal a day of Nurtini Energy multifibre (1.5cal per ml).

> Does drink water etc during the day and if so how much?

> We currently

> give him 1250ml of water daily (sometimes more) on top of his Nutrini.

>

> Good luck with the oral feeds.

>

> Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

> Scotland

>

February 19, 2006

Elaine,

can't drink water, only sips. He is still aspirating thin liquids,

they just go down way too fast. We give him 500 cc of water a day by tube.

You may be giving Jack too much water if he is getting 1500 calories, that

is what gets. His GI cut the tube for his day and night feed but

replaced those fluids with water. Still he only needs 500 cc of water + 500

cc of formula at night + about 760 calories eaten during the day.

Before the oral calories he got 500 cc formula during the day + 240 cc of

water + 750 cc of formula at night.

Debbie

Re: Finally Eating! Need Help!

Debbie,

This is so encouraging. Jack is 9 in July and still tube fed He will

have little tastes of smooth soup, yoghurt etc but nothing like enough. He

is on

1500cal a day of Nurtini Energy multifibre (1.5cal per ml).

Does drink water etc during the day and if so how much? We

currently

give him 1250ml of water daily (sometimes more) on top of his Nutrini.

Good luck with the oral feeds.

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

February 19, 2006

Debbie, My daughter has been on mostly pudding textures for a while

and gets about 800 cals a day on just those items. She does not have

a g-tube. There are 2 things that have been lifesavers for us.

First, there is a food supplement called " Benecalorie " which is in

liquid form, only 1.5 ounces and is 330 calories. You can add it to

mashed potatoes, yogurt, etc. Carmen gets one of those a day and

without it would for sure have a tube by now. Benecalorie can be

purchased through Walgreens.com and is $36 for a case of 24 1.5 ounce

cups. They have always had free shipping on this product, and I order

every 3 weeks and get the product in about 5 days from the order.

The other thing I would suggest is " smoothies " . You can make a

vanilla, banana, peanut butter smoothie loaded with cals and

nutrients. So long as there is no peanut allergy, peanut butter adds

lots of cals and protein. As far as adding other textures, the things

that Carmen tolerates the most other than pudding are: pastas--mac

and cheese, ravioli, etc. She only 20 months old so she eats #3 baby

food and other Gerber Graduate items, which you may or may not want to

try with a 9 year old. All I can say is she can eat pretty much any

Gerber Graduate food without an issue and they are " real " food, but

just softer and easier to swallow, even if I try the same food in the

adult version. I hope this info helps you.

, mom to Zachary 4.5 and Carmen 20 months (CHARGE)

>

> Hi Everyone,

>

> My son, , will be 9 on May 8, is finally eating, however, he

is only

> eating yogurts and puddings. The OT is now slowly introducing him

to the

> next texture (smooth but slightly lumpy, such as pureed foods in the

blender

> (the Magic Bullet is amazing for pureeing foods!). Anyway, after he

began

> taking in approximately 800 calories in yogurts and puddings, I can't

> interrupt his momentum by saying he needs his tube because all he is

eating

> is yogurt and pudding, you know what I mean?

>

> Anyway, introducing a new food he is not use to is frightening for

him and

> needs to be done in therapy and then once he is very comfortable, he

will

> eat that anywhere. My question is, do any of you adult CHARGERS or your

> kids live on puddings and yogurts? He eats that creamy Yoplait

which is 190

> calories and puddings made with whole milk topped with whipped cream.

>

> One good thing is he is about 10 lbs overweight, so this was a fantastic

> time to cut the tube feeding. I feel fortunate we got him very

chunky to be

> able to do this. He still gets 500 cc at night of a very high calorie

> formula (Peptamen 1.5), so it isn't like he isn't getting

" nutrients " . Are

> there any other foods you guys know of that have that smooth yogurt or

> pudding consistency or foods that puree up to that by adding this

and that?

> He likes things very sweet, but I want him to get use to other

things. I

> tried carrots mixed with cream and added some brown sugar, and the

> consistency seemed smooth, but it was such a different food that he

became

> apprehensive and that fear came back. We must go slowly not to set him

> back.

>

> Any input you guys have is greatly appreciated. I just never

thought I'd

> see this day come (9 years of never eating) and don't want to spoil it

> because this is all he can eat right at the moment. We have to start

> somewhere. I mean, he goes all day without having the tube now.

This is

> such a miracle.

>

> Debbie Matasker

>

> 's walks

>

> Hi again,

>

> I also meant to share re. 's improved walking skills!

> He is 28 months now and has been using a K walker outdoors since about

> October. He is getting really good with it, lifting it up and down

kerbs,

> steering etc...

> Then last week suddenly he got more confident walking around our house

> independantly. He has started to stroll on his own between rooms

downstairs.

> It was so funny the first time I was in the kitchen and saw him walk

around

> the corner into the room on his own! It was like he was a " proper

toddler "

> all of a sudden!! So we are pretty pleased with him. Using the frame

> outside seems to have helped with his balance too.

> Of course, pride came before a fall. And yesterday, head met

pavement in a

> walking frame malfunction! Misjudged a kerb height. A bruise and first

> cut/grazed forehead followed!!

> Mum (ME!) felt very very bad for not catching him in time. But less

than an

> hour later he was pointing frantically to the front door to go out

walking

> again so it didn't put him off! He has also got a new favourite word,

> prompted by his desire to go out walking ALL the time. He stands at the

> front door and shouts Open!! Open !! Open!! But it comes out like

> " OOOOOOOO-PEN " .......!!

>

> What a star! Sorry to brag, you gotta sometimes!!

>

> is (Mum to , 2, UK)

>

February 19, 2006

Debbie-

This is sooooooo wonderful! I have no useful advice though. was at

one point able to gullet as much of certain textures as he liked

(particularly Gerber's Banana and Gerber's Plum Tapioca - I think they are

in consistency the most like his own mucous...I mean he would take 12-16

ounces at a sitting.). This was when he was almost three - then a year

later he completely lost interest in it. When he was about nine he became

interested again, but really shunned the " Gerber's " - so we tried soy

puddings and applesauces and things like that - and he hated it. It just

didn't seem to him like " real food " . has a strong dislike for obvious

inequitable accommodations. What did do though is start sipping on

iced tea and soy milk and water - his insistence - which he managed at first

only with a straw, and now can do with a cup, a straw and a bottle (regular

16 oz sports bottle). He also loves shaved ice. He is now 16 and is more

focusing on buying his own Vita Mix and taking inventory of his many food

allergies and making his own food in a blender - rather than the food we

make which is soy/rice milk + soy formula powder + jarred baby meats and

veggies + olive oil. He really cannot stand textures in his mouth - and

becomes overwhelmed trying to organize a bolus with textures - this is with

years of OT and ST, oral motor exercises and systematic de-desensitization

protocols.....

So a giant heartfelt congratulations to you and !!!

Yippppeeeeeeeeee!!!!

best-

yuka

RE: Finally Eating! Need Help!

> Hi Everyone,

>

> My son, , will be 9 on May 8, is finally eating, however, he is

only

> eating yogurts and puddings. The OT is now slowly introducing him to the

> next texture (smooth but slightly lumpy, such as pureed foods in the

blender

> (the Magic Bullet is amazing for pureeing foods!). Anyway, after he began

> taking in approximately 800 calories in yogurts and puddings, I can't

> interrupt his momentum by saying he needs his tube because all he is

eating

> is yogurt and pudding, you know what I mean?

>

> Anyway, introducing a new food he is not use to is frightening for him and

> needs to be done in therapy and then once he is very comfortable, he will

> eat that anywhere. My question is, do any of you adult CHARGERS or your

> kids live on puddings and yogurts? He eats that creamy Yoplait which is

190

> calories and puddings made with whole milk topped with whipped cream.

>

> One good thing is he is about 10 lbs overweight, so this was a fantastic

> time to cut the tube feeding. I feel fortunate we got him very chunky to

be

> able to do this. He still gets 500 cc at night of a very high calorie

> formula (Peptamen 1.5), so it isn't like he isn't getting " nutrients " .

Are

> there any other foods you guys know of that have that smooth yogurt or

> pudding consistency or foods that puree up to that by adding this and

that?

> He likes things very sweet, but I want him to get use to other things. I

> tried carrots mixed with cream and added some brown sugar, and the

> consistency seemed smooth, but it was such a different food that he became

> apprehensive and that fear came back. We must go slowly not to set him

> back.

>

> Any input you guys have is greatly appreciated. I just never thought I'd

> see this day come (9 years of never eating) and don't want to spoil it

> because this is all he can eat right at the moment. We have to start

> somewhere. I mean, he goes all day without having the tube now. This is

> such a miracle.

>

> Debbie Matasker

February 19, 2006

Hi Debbie,]

I do not have any answers for you as far as the eating goes, but I just wanted

to say how happy I am for you and that he is starting to eat. This is

such a wonderful milestone. I guess it does not matter at what age our kids do

things, they eventaully do it. Kudos to .

's walks

Hi again,

I also meant to share re. 's improved walking skills!

He is 28 months now and has been using a K walker outdoors since about

October. He is getting really good with it, lifting it up and down kerbs,

steering etc...

Then last week suddenly he got more confident walking around our house

independantly. He has started to stroll on his own between rooms downstairs.

It was so funny the first time I was in the kitchen and saw him walk around

the corner into the room on his own! It was like he was a " proper toddler "

all of a sudden!! So we are pretty pleased with him. Using the frame

outside seems to have helped with his balance too.

Of course, pride came before a fall. And yesterday, head met pavement in a

walking frame malfunction! Misjudged a kerb height. A bruise and first

cut/grazed forehead followed!!

Mum (ME!) felt very very bad for not catching him in time. But less than an

hour later he was pointing frantically to the front door to go out walking

again so it didn't put him off! He has also got a new favourite word,

prompted by his desire to go out walking ALL the time. He stands at the

front door and shouts Open!! Open !! Open!! But it comes out like

" OOOOOOOO-PEN " .......!!

What a star! Sorry to brag, you gotta sometimes!!

is (Mum to , 2, UK)

February 19, 2006

Debbie-

Can you thicken the formula (or pediasure, which might taste better)

to a pudding consistency so can eat it? That way, his

nutritional needs will be met, and he will still be eating? I don't

know if its feasable, but ThickIt might help.

Kate (PT to a CHARGEr)

>

> Debbie-

>

> This is sooooooo wonderful! I have no useful advice though.

was at

> one point able to gullet as much of certain textures as he liked

> (particularly Gerber's Banana and Gerber's Plum Tapioca - I think

they are

> in consistency the most like his own mucous...I mean he would take

12-16

> ounces at a sitting.). This was when he was almost three - then a

year

> later he completely lost interest in it. When he was about nine he

became

> interested again, but really shunned the " Gerber's " - so we tried

soy

> puddings and applesauces and things like that - and he hated it.

It just

> didn't seem to him like " real food " . has a strong dislike

for obvious

> inequitable accommodations. What did do though is start

sipping on

> iced tea and soy milk and water - his insistence - which he

managed at first

> only with a straw, and now can do with a cup, a straw and a bottle

(regular

> 16 oz sports bottle). He also loves shaved ice. He is now 16 and

is more

> focusing on buying his own Vita Mix and taking inventory of his

many food

> allergies and making his own food in a blender - rather than the

food we

> make which is soy/rice milk + soy formula powder + jarred baby

meats and

> veggies + olive oil. He really cannot stand textures in his

mouth - and

> becomes overwhelmed trying to organize a bolus with textures -

this is with

> years of OT and ST, oral motor exercises and systematic de-

desensitization

> protocols.....

>

> So a giant heartfelt congratulations to you and !!!

>

> Yippppeeeeeeeeee!!!!

>

> best-

>

> yuka

> RE: Finally Eating! Need Help!

>

> > Hi Everyone,

> >

> > My son, , will be 9 on May 8, is finally eating, however,

he is

> only

> > eating yogurts and puddings. The OT is now slowly introducing

him to the

> > next texture (smooth but slightly lumpy, such as pureed foods in

the

> blender

> > (the Magic Bullet is amazing for pureeing foods!). Anyway,

after he began

> > taking in approximately 800 calories in yogurts and puddings, I

can't

> > interrupt his momentum by saying he needs his tube because all

he is

> eating

> > is yogurt and pudding, you know what I mean?

> >

> > Anyway, introducing a new food he is not use to is frightening

for him and

> > needs to be done in therapy and then once he is very

comfortable, he will

> > eat that anywhere. My question is, do any of you adult CHARGERS

or your

> > kids live on puddings and yogurts? He eats that creamy Yoplait

which is

> 190

> > calories and puddings made with whole milk topped with whipped

cream.

> >

> > One good thing is he is about 10 lbs overweight, so this was a

fantastic

> > time to cut the tube feeding. I feel fortunate we got him very

chunky to

> be

> > able to do this. He still gets 500 cc at night of a very high

calorie

> > formula (Peptamen 1.5), so it isn't like he isn't

getting " nutrients " .

> Are

> > there any other foods you guys know of that have that smooth

yogurt or

> > pudding consistency or foods that puree up to that by adding

this and

> that?

> > He likes things very sweet, but I want him to get use to other

things. I

> > tried carrots mixed with cream and added some brown sugar, and

the

> > consistency seemed smooth, but it was such a different food that

he became

> > apprehensive and that fear came back. We must go slowly not to

set him

> > back.

> >

> > Any input you guys have is greatly appreciated. I just never

thought I'd

> > see this day come (9 years of never eating) and don't want to

spoil it

> > because this is all he can eat right at the moment. We have to

start

> > somewhere. I mean, he goes all day without having the tube

now. This is

> > such a miracle.

> >

> > Debbie Matasker

>

February 19, 2006

Debbie,

Eating pudding, yougurt, mashed potatoes and applesauce is 's

life, though she eats a regular diet of blended foods. There can't be

any chunks. Her staff blend things on weekends and freeze them, she

takes a soup or something for lunch. She drinks thickened liquids,

because she chokes on anything thin. There is an Ensure pudding out

there, she loves it, but insurance stopped paying for it because they

say its supplemental, not necessary. It's $80 a case and she can't

afford it with just her SSI. hasn't been tube fed for a few

years now. She is drinking an Ensure drink twice a day. She has gained

5lbs. since she hasmoved into this new house, up to 68lbs!!

, friend to , 25

February 19, 2006

Debbie,

Eating pudding, yougurt, mashed potatoes and applesauce is 's

life, though she eats a regular diet of blended foods. There can't be

any chunks. Her staff blend things on weekends and freeze them, she

takes a soup or something for lunch. She drinks thickened liquids,

because she chokes on anything thin. There is an Ensure pudding out

there, she loves it, but insurance stopped paying for it because they

say its supplemental, not necessary. It's $80 a case and she can't

afford it with just her SSI. hasn't been tube fed for a few

years now. She is drinking an Ensure drink twice a day. She has gained

5lbs. since she hasmoved into this new house, up to 68lbs!!

, friend to , 25

February 19, 2006

Debbie,

My daugther Makenna is eatting foods and still gets two bolus feeds

through her tube during the day. She prefers yogurt and pudding

also. She is obsessed with it. I think she is a bit lazy when it

comes to chewing. We give her kid yogurt that has no chunks in it.

She eats yogurt three times per day. She also likes applesauce,

there are different flavors now that may help him get used to

different taste. We had to stop the pudding because it came to a

point when she would eat nothing else. Just recently I have gotten

her to eat baked potatoes, mashed potatoes (KFC makes really smooth

potatoes,boxed potatoes are also very smooth.), cheese, cream of

wheat or COCO wheats for breakfast, salad with ranch dressing, and

any kind of candy she loves chocolate. I know she can chew

because if it is candy or something sweet like fruit chews she will

chew it up. This week I bought a couple of those cottage cheese

cups that come with fruit topping, I thought she might like those.

We give her a tube feeding when she wakes up and she eats breakfast

about 1.5 hours later at school. She eats lunch and gets a bolus of

water after and then her last tube feeding before bed after dinner.

I find if I give the tube feedings after she eats she is still

willing to eat.

Makenna tends to like strong flavors. Try the mashed potatoes and

cream of wheat those are pretty smooth foods that may widen his food

experience. It is slow going, Makenna has been eatting for 2 years

now.

Goodluck,

, mom to Makenna 5

>

> Hi Everyone,

>

> My son, , will be 9 on May 8, is finally eating, however,

he is only

> eating yogurts and puddings. The OT is now slowly introducing him

to the

> next texture (smooth but slightly lumpy, such as pureed foods in

the blender

> (the Magic Bullet is amazing for pureeing foods!). Anyway, after

he began

> taking in approximately 800 calories in yogurts and puddings, I

can't

> interrupt his momentum by saying he needs his tube because all he

is eating

> is yogurt and pudding, you know what I mean?

>

> Anyway, introducing a new food he is not use to is frightening for

him and

> needs to be done in therapy and then once he is very comfortable,

he will

> eat that anywhere. My question is, do any of you adult CHARGERS

or your

> kids live on puddings and yogurts? He eats that creamy Yoplait

which is 190

> calories and puddings made with whole milk topped with whipped

cream.

>

> One good thing is he is about 10 lbs overweight, so this was a

fantastic

> time to cut the tube feeding. I feel fortunate we got him very

chunky to be

> able to do this. He still gets 500 cc at night of a very high

calorie

> formula (Peptamen 1.5), so it isn't like he isn't

getting " nutrients " . Are

> there any other foods you guys know of that have that smooth

yogurt or

> pudding consistency or foods that puree up to that by adding this

and that?

> He likes things very sweet, but I want him to get use to other

things. I

> tried carrots mixed with cream and added some brown sugar, and the

> consistency seemed smooth, but it was such a different food that

he became

> apprehensive and that fear came back. We must go slowly not to

set him

> back.

>

> Any input you guys have is greatly appreciated. I just never

thought I'd

> see this day come (9 years of never eating) and don't want to

spoil it

> because this is all he can eat right at the moment. We have to

start

> somewhere. I mean, he goes all day without having the tube now.

This is

> such a miracle.

>

> Debbie Matasker

>

> 's walks

>

> Hi again,

>

> I also meant to share re. 's improved walking skills!

> He is 28 months now and has been using a K walker outdoors since

about

> October. He is getting really good with it, lifting it up and down

kerbs,

> steering etc...

> Then last week suddenly he got more confident walking around our

house

> independantly. He has started to stroll on his own between rooms

downstairs.

> It was so funny the first time I was in the kitchen and saw him

walk around

> the corner into the room on his own! It was like he was a " proper

toddler "

> all of a sudden!! So we are pretty pleased with him. Using the

frame

> outside seems to have helped with his balance too.

> Of course, pride came before a fall. And yesterday, head met

pavement in a

> walking frame malfunction! Misjudged a kerb height. A bruise and

first

> cut/grazed forehead followed!!

> Mum (ME!) felt very very bad for not catching him in time. But

less than an

> hour later he was pointing frantically to the front door to go out

walking

> again so it didn't put him off! He has also got a new favourite

word,

> prompted by his desire to go out walking ALL the time. He stands

at the

> front door and shouts Open!! Open !! Open!! But it comes out like

> " OOOOOOOO-PEN " .......!!

>

> What a star! Sorry to brag, you gotta sometimes!!

>

> is (Mum to , 2, UK)

>

February 19, 2006