RE: Hello & Need some advice

[Guest guest]

-

My daughter, Aubrie, had a Gtube for her first year and a half. She had

it removed before her 2nd birthday. She also had failure to thrive,

swallowing difficulties, and GE reflux. I would have to look back at my

notes from the time for details. I remember thinking she'd never eat.

She'd vomit just at the sight of the spoon. She never did master the

suck-swallow-breath thing with the bottle but went directly to a sippy

cup. When she first ate foods, she would pocket the difficult textures

in between her lower lip and gum. I don't know how she could separate

the hull from the popcorn, the meat from the veggies, etc, but she did.

Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

less yuckies pocketed and finally was able to eat everything. There are

very few foods that she does not manage fine now. In fact, I can't

think of one off hand.

We were stumped as to how to go from the tube to oral feeding. The ped

didn't have any good suggestions except that she gave us her blessing to

do whatever during the spring when we expected no ear infections and

colds and could best afford any weight loss that might occur during the

transition. So the SLP and I figured out a plan together. We did

overnight tube feedings that ended early enough in the night so that

she'd hopefully wake up somewhat hungry. Then we did only oral feeding

during the day.

Some dr's had suggested oral feeding at meals followed by a tube feeding

to " top off " whatever the child didn't take orally. But that didn't

make sense to us cuz then she'd never really get that feeling of

hunger. I don't know how we did it, but we did make the transition. At

the time, we gave Aubrie Pediasure instead of milk to get as many

calories in as possible. Now I wish we'd never given up the Pediasure

cuz she's still very small but now won't take the taste of it.

So-- Perhaps I didn't give you much specific help, but I hope I gave you

some evidence that it is possible to wean from the tube to oral

feeding. It will take work and it will be frustrating. In my

experience, I needed a supportive SLP to work with me since the dr's

weren't so helpful. Our docs didn't care so much if she ever ate

orally. They didn't care how she got it, they just wanted her to get

the nutrition. From a mom's point of view, the way the nutrition is

taken in is a huge issue.

Best of luck to you and welcome to the list. I'm sure you'll find many

helpful posts here.

Michele W

Aubrie's mom (6 yrs) CHaRgE

[Guest guest]

-

My daughter, Aubrie, had a Gtube for her first year and a half. She had

it removed before her 2nd birthday. She also had failure to thrive,

swallowing difficulties, and GE reflux. I would have to look back at my

notes from the time for details. I remember thinking she'd never eat.

She'd vomit just at the sight of the spoon. She never did master the

suck-swallow-breath thing with the bottle but went directly to a sippy

cup. When she first ate foods, she would pocket the difficult textures

in between her lower lip and gum. I don't know how she could separate

the hull from the popcorn, the meat from the veggies, etc, but she did.

Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

less yuckies pocketed and finally was able to eat everything. There are

very few foods that she does not manage fine now. In fact, I can't

think of one off hand.

We were stumped as to how to go from the tube to oral feeding. The ped

didn't have any good suggestions except that she gave us her blessing to

do whatever during the spring when we expected no ear infections and

colds and could best afford any weight loss that might occur during the

transition. So the SLP and I figured out a plan together. We did

overnight tube feedings that ended early enough in the night so that

she'd hopefully wake up somewhat hungry. Then we did only oral feeding

during the day.

Some dr's had suggested oral feeding at meals followed by a tube feeding

to " top off " whatever the child didn't take orally. But that didn't

make sense to us cuz then she'd never really get that feeling of

hunger. I don't know how we did it, but we did make the transition. At

the time, we gave Aubrie Pediasure instead of milk to get as many

calories in as possible. Now I wish we'd never given up the Pediasure

cuz she's still very small but now won't take the taste of it.

So-- Perhaps I didn't give you much specific help, but I hope I gave you

some evidence that it is possible to wean from the tube to oral

feeding. It will take work and it will be frustrating. In my

experience, I needed a supportive SLP to work with me since the dr's

weren't so helpful. Our docs didn't care so much if she ever ate

orally. They didn't care how she got it, they just wanted her to get

the nutrition. From a mom's point of view, the way the nutrition is

taken in is a huge issue.

Best of luck to you and welcome to the list. I'm sure you'll find many

helpful posts here.

Michele W

Aubrie's mom (6 yrs) CHaRgE

[Guest guest]

-

My daughter, Aubrie, had a Gtube for her first year and a half. She had

it removed before her 2nd birthday. She also had failure to thrive,

swallowing difficulties, and GE reflux. I would have to look back at my

notes from the time for details. I remember thinking she'd never eat.

She'd vomit just at the sight of the spoon. She never did master the

suck-swallow-breath thing with the bottle but went directly to a sippy

cup. When she first ate foods, she would pocket the difficult textures

in between her lower lip and gum. I don't know how she could separate

the hull from the popcorn, the meat from the veggies, etc, but she did.

Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

less yuckies pocketed and finally was able to eat everything. There are

very few foods that she does not manage fine now. In fact, I can't

think of one off hand.

We were stumped as to how to go from the tube to oral feeding. The ped

didn't have any good suggestions except that she gave us her blessing to

do whatever during the spring when we expected no ear infections and

colds and could best afford any weight loss that might occur during the

transition. So the SLP and I figured out a plan together. We did

overnight tube feedings that ended early enough in the night so that

she'd hopefully wake up somewhat hungry. Then we did only oral feeding

during the day.

Some dr's had suggested oral feeding at meals followed by a tube feeding

to " top off " whatever the child didn't take orally. But that didn't

make sense to us cuz then she'd never really get that feeling of

hunger. I don't know how we did it, but we did make the transition. At

the time, we gave Aubrie Pediasure instead of milk to get as many

calories in as possible. Now I wish we'd never given up the Pediasure

cuz she's still very small but now won't take the taste of it.

So-- Perhaps I didn't give you much specific help, but I hope I gave you

some evidence that it is possible to wean from the tube to oral

feeding. It will take work and it will be frustrating. In my

experience, I needed a supportive SLP to work with me since the dr's

weren't so helpful. Our docs didn't care so much if she ever ate

orally. They didn't care how she got it, they just wanted her to get

the nutrition. From a mom's point of view, the way the nutrition is

taken in is a huge issue.

Best of luck to you and welcome to the list. I'm sure you'll find many

helpful posts here.

Michele W

Aubrie's mom (6 yrs) CHaRgE

[Guest guest]

I can't imagine if I was still paying for Dylan's formula. At $12 a day it

would add up, but not to that much.

Many families make homemade formula by using a VitaMix. We have not made it

that far, since Dylan seems so sensitive, but I remain hopeful.

Are there any community resources that would help fund the formula?

Kim

On 8/8/04 7:30 PM, " Holweger "

wrote:

> Hello!!! My name is Holweger and I have a 4-year old

> CHARGER named Cameron. I'm looking for someone who can help me with

> a feeding issue. My son is currently fed through a g-tube. He is

> able to swallow and is cleared medically for all textures of foods.

> He's just not interested in learning to eat by mouth. He's had the

> tube since birth b/c of failure to thrive and he was diagnosed with

> a mild case of cerebral palsy. He also has a high palate. I'm

> looking to see if there is anyone out there who has been able to

> successfully get their child off of the g-tube. I know every child

> is different and I'm looking for ideas. What did you do and where

> did you start and progress from there? Is there anyone with

> suggestions? He gets his formula through a medical store and it

> costs us $1500/month. I'm getting to a point where the bills are

> piling up quick. THANKS!!!!!!!!!!!!!!!!!!!!!

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

I can't imagine if I was still paying for Dylan's formula. At $12 a day it

would add up, but not to that much.

Many families make homemade formula by using a VitaMix. We have not made it

that far, since Dylan seems so sensitive, but I remain hopeful.

Are there any community resources that would help fund the formula?

Kim

On 8/8/04 7:30 PM, " Holweger "

wrote:

> Hello!!! My name is Holweger and I have a 4-year old

> CHARGER named Cameron. I'm looking for someone who can help me with

> a feeding issue. My son is currently fed through a g-tube. He is

> able to swallow and is cleared medically for all textures of foods.

> He's just not interested in learning to eat by mouth. He's had the

> tube since birth b/c of failure to thrive and he was diagnosed with

> a mild case of cerebral palsy. He also has a high palate. I'm

> looking to see if there is anyone out there who has been able to

> successfully get their child off of the g-tube. I know every child

> is different and I'm looking for ideas. What did you do and where

> did you start and progress from there? Is there anyone with

> suggestions? He gets his formula through a medical store and it

> costs us $1500/month. I'm getting to a point where the bills are

> piling up quick. THANKS!!!!!!!!!!!!!!!!!!!!!

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

I can't imagine if I was still paying for Dylan's formula. At $12 a day it

would add up, but not to that much.

Many families make homemade formula by using a VitaMix. We have not made it

that far, since Dylan seems so sensitive, but I remain hopeful.

Are there any community resources that would help fund the formula?

Kim

On 8/8/04 7:30 PM, " Holweger "

wrote:

> Hello!!! My name is Holweger and I have a 4-year old

> CHARGER named Cameron. I'm looking for someone who can help me with

> a feeding issue. My son is currently fed through a g-tube. He is

> able to swallow and is cleared medically for all textures of foods.

> He's just not interested in learning to eat by mouth. He's had the

> tube since birth b/c of failure to thrive and he was diagnosed with

> a mild case of cerebral palsy. He also has a high palate. I'm

> looking to see if there is anyone out there who has been able to

> successfully get their child off of the g-tube. I know every child

> is different and I'm looking for ideas. What did you do and where

> did you start and progress from there? Is there anyone with

> suggestions? He gets his formula through a medical store and it

> costs us $1500/month. I'm getting to a point where the bills are

> piling up quick. THANKS!!!!!!!!!!!!!!!!!!!!!

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

,

We also got our Pediasure paid for, some by insurance and some by a

state Medicaid program. But more importantly we were successful in weaning from

the tube after 4 years. Bryce couldn't swallow at all until we went for the

vital stim therapy and successfully treated his swallowing muscles. After that,

it took about 9 months of hard work to transition from no oral eating to

getting off the g-tube. The first step really is to create some sense of hunger.

Tube fed babies don't understand hunger and they certainly don't understand that

food alleviates that problem. So we had to cut back a lot on tube feedings

and then introduce foods. We would tube feed at night and not at all during the

day. At first, the swallowing therapist had suggested we cut drastically back

on feedings but he became very weak and lethargic. He was not able to consume

enough food to make up for that loss. So we cut back about 15- 20% at a time

then worked with him to learn to eat enough calories to replace the loss. I

remember that meals took a very long time (I think about 2 hours per meal at

first) because he was just learning to use his mouth to chew. We did work with a

feeding team at our DEC who helped him learn to use his cheeks, tongue, teeth

etc, None of that comes naturally to a child who has been tube fed. It must be

taught. And it takes work so I believe unless you create the hunger they will

generally choose the easier route of being tube fed. I also remember it being

a lot of trial and error figuring out how to navigate the waters.

Several months after we had been working on this process, we were

eating out at a Mexican restraunt and I grabbed by syringes to tube feed him and

he stopped me and pointed to his taco. He wanted to fill his hunger with food.

The light bulb had gone off! I remember being so thrilled!

Bryce now eats everything and has so for 3 years. You mentioned the

pallate too. Bryce had a severe bilateral cleft lip and pallate and continues to

have a high arch after it was repiared. That does not seem to affect his

eating at all. While he was learning to eat though, he did use to pocket food up

there in his palatte because he was not yet proficient at moving food around in

his mouth. Now it is not an issue.

I wish you well.

Deedee

[Guest guest]

,

We also got our Pediasure paid for, some by insurance and some by a

state Medicaid program. But more importantly we were successful in weaning from

the tube after 4 years. Bryce couldn't swallow at all until we went for the

vital stim therapy and successfully treated his swallowing muscles. After that,

it took about 9 months of hard work to transition from no oral eating to

getting off the g-tube. The first step really is to create some sense of hunger.

Tube fed babies don't understand hunger and they certainly don't understand that

food alleviates that problem. So we had to cut back a lot on tube feedings

and then introduce foods. We would tube feed at night and not at all during the

day. At first, the swallowing therapist had suggested we cut drastically back

on feedings but he became very weak and lethargic. He was not able to consume

enough food to make up for that loss. So we cut back about 15- 20% at a time

then worked with him to learn to eat enough calories to replace the loss. I

remember that meals took a very long time (I think about 2 hours per meal at

first) because he was just learning to use his mouth to chew. We did work with a

feeding team at our DEC who helped him learn to use his cheeks, tongue, teeth

etc, None of that comes naturally to a child who has been tube fed. It must be

taught. And it takes work so I believe unless you create the hunger they will

generally choose the easier route of being tube fed. I also remember it being

a lot of trial and error figuring out how to navigate the waters.

Several months after we had been working on this process, we were

eating out at a Mexican restraunt and I grabbed by syringes to tube feed him and

he stopped me and pointed to his taco. He wanted to fill his hunger with food.

The light bulb had gone off! I remember being so thrilled!

Bryce now eats everything and has so for 3 years. You mentioned the

pallate too. Bryce had a severe bilateral cleft lip and pallate and continues to

have a high arch after it was repiared. That does not seem to affect his

eating at all. While he was learning to eat though, he did use to pocket food up

there in his palatte because he was not yet proficient at moving food around in

his mouth. Now it is not an issue.

I wish you well.

Deedee

[Guest guest]

,

We also got our Pediasure paid for, some by insurance and some by a

state Medicaid program. But more importantly we were successful in weaning from

the tube after 4 years. Bryce couldn't swallow at all until we went for the

vital stim therapy and successfully treated his swallowing muscles. After that,

it took about 9 months of hard work to transition from no oral eating to

getting off the g-tube. The first step really is to create some sense of hunger.

Tube fed babies don't understand hunger and they certainly don't understand that

food alleviates that problem. So we had to cut back a lot on tube feedings

and then introduce foods. We would tube feed at night and not at all during the

day. At first, the swallowing therapist had suggested we cut drastically back

on feedings but he became very weak and lethargic. He was not able to consume

enough food to make up for that loss. So we cut back about 15- 20% at a time

then worked with him to learn to eat enough calories to replace the loss. I

remember that meals took a very long time (I think about 2 hours per meal at

first) because he was just learning to use his mouth to chew. We did work with a

feeding team at our DEC who helped him learn to use his cheeks, tongue, teeth

etc, None of that comes naturally to a child who has been tube fed. It must be

taught. And it takes work so I believe unless you create the hunger they will

generally choose the easier route of being tube fed. I also remember it being

a lot of trial and error figuring out how to navigate the waters.

Several months after we had been working on this process, we were

eating out at a Mexican restraunt and I grabbed by syringes to tube feed him and

he stopped me and pointed to his taco. He wanted to fill his hunger with food.

The light bulb had gone off! I remember being so thrilled!

Bryce now eats everything and has so for 3 years. You mentioned the

pallate too. Bryce had a severe bilateral cleft lip and pallate and continues to

have a high arch after it was repiared. That does not seem to affect his

eating at all. While he was learning to eat though, he did use to pocket food up

there in his palatte because he was not yet proficient at moving food around in

his mouth. Now it is not an issue.

I wish you well.

Deedee

[Guest guest]

,

I also remember that the Pediasure cost a lot more buying it from the

medical supply store than it did from a grocery store. I believe it was almost

double! We had to buy it from the medical supply store because insurance was

paying but if you are paying yourself, you may want to look into the grocery

stores.

Deedee

[Guest guest]

,

I also remember that the Pediasure cost a lot more buying it from the

medical supply store than it did from a grocery store. I believe it was almost

double! We had to buy it from the medical supply store because insurance was

paying but if you are paying yourself, you may want to look into the grocery

stores.

Deedee

[Guest guest]

,

I also remember that the Pediasure cost a lot more buying it from the

medical supply store than it did from a grocery store. I believe it was almost

double! We had to buy it from the medical supply store because insurance was

paying but if you are paying yourself, you may want to look into the grocery

stores.

Deedee

[Guest guest]

Hi

What kind of formula are you using for your son?

from IL (Karlee 16 years)

[Guest guest]

,

Welcome. My son is also named Cameron - he is 2 1/2 and tube fed

although we are slowly moving off it. He's about 80% oral - the 20%

is the whole milk he isn't able to take orally. He also eats a pretty

typical toddler diet of solids.

He got a g-tube because he was not able to protect his airway at

birth. He also had reflux and non-symptomatic pyloric stenosis, but

was never termed " failure to thrive " .

Last September he was cleared for thin liquids and we've been working

with him ever since to get him off the tube. Before he was cleared

for liquids he was safe to eat crackers and anything else he could

tolerate. He would gag and choke but kept on eating. I think I'd have

given up if I was in his place, but something inside him has kept him

moving forward. And I always gave him things to eat. If he signed it,

he could have it.

Every child is different - but I think in general it's important to

make eating fun and help your child understand that eating is part of

life. We even made up a " Cammy Dance " song when he would eat. My

older son and I would sing it - complete with hand movements

every time Cameron took a bit of anything. Every little step was a

big celebration.

And we always had our Cameron at the table for meals - even if it was

just to play with a toy. I can't tell you how much food I threw away

from his plate, but I kept putting it there for every meal. Unlike a

child who is oral from birth tube kids need to be taught/shown that

eating is part of life. It's social, it's interactive.

As soon as I could we moved him off of night feeds - I figured that

typical kids don't get fed when sleeping so why should Cameron? But

he still does not always eat much when he wakes up - but over the day

he does.

For me, eating has been the most challenging because it takes so much

patience to keep trying. I still remember the times I cried in the

kitchen when Cameron was younger because he would barely eat

anything. It was tough, but now that I see a light at the end of the

tunnel I know that it is paying off.

Another thing I realized is that no one but you and your family

really care if Cameron eats orally or by tube - just as long as he's

thriving. When I realized that I took charge of our son's eating by

starting to push him - faster pump rate, etc. (when it was safe to do

so). Now he is off the electric pump and is gravity fed the remainder

of his milk when necessary. He is also able to take a kid vitamin

orally every day which is another reason why we moved off Pediasure

and onto whole milk. It was so nice not to no longer get those 40

pound boxes of Pediasure every month.

We also go to a feeding therapist who is great. I realized that I

needed to be accountable to someone. Together we set little goals

which will help us with the big goal of getting Cameron off the tube.

At this point we only see her every other month as he is doing so

well - in our sessions we just sit and talk while Cameron eats. But

having her support has really helped me along this slow path of

progression.

I hope I've been helpful, it's a tough thing and many people will

give you lots of advice so it's up to you to know what will help your

child and to listen to your inner voice.

Take care,

Seattle, WA

Mom to Cameron, 2 1/2 CHaRGE & bilateral cleft lip/palate; , 4.

[Guest guest]

Pediasure will give you samples the first time you call. They used to send

coupons if you called every month. I think the company is Ross something or

other. If you look it up on the web, it should all be there.

Carolyn

mother of Tanis 2 VATERS and Denny 3 1/2 months and wife of Chris

[Guest guest]

Wow -- first of all let me thank everybody for all your replies. You all have

been real helpful and I'm going to use your ideas. I'm going to answer

questions all in one reply......

Cameron uses a formula called Compleat which is a special formula just for tube

feedings. We've tried Pediasure but Cam would always throw up with it. I've

looked into WIC and Medicaid, but my husband makes too much money. Sometimes I

just want to tell these people " If I made too much money, I wouldn't be asking

you for help! " Our insurance does help us with the formula but we have a high

deductible($4000 per person) and they pay very little on it. In fact we're

having problems with the insurance company paying the correct amount.

I've been looking into the vital-slim therapy lately. Alot of you mentioned

that your child doesn't feel hunger with a g-tube. Cameron does b/c if we are

late feeding him he gets very cranky and then he's fine after we feed him.

Thanks again!!!!!!!!!!!!!!!!!!!

Michele Westmaas wrote:

-

My daughter, Aubrie, had a Gtube for her first year and a half. She had

it removed before her 2nd birthday. She also had failure to thrive,

swallowing difficulties, and GE reflux. I would have to look back at my

notes from the time for details. I remember thinking she'd never eat.

She'd vomit just at the sight of the spoon. She never did master the

suck-swallow-breath thing with the bottle but went directly to a sippy

cup. When she first ate foods, she would pocket the difficult textures

in between her lower lip and gum. I don't know how she could separate

the hull from the popcorn, the meat from the veggies, etc, but she did.

Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

less yuckies pocketed and finally was able to eat everything. There are

very few foods that she does not manage fine now. In fact, I can't

think of one off hand.

We were stumped as to how to go from the tube to oral feeding. The ped

didn't have any good suggestions except that she gave us her blessing to

do whatever during the spring when we expected no ear infections and

colds and could best afford any weight loss that might occur during the

transition. So the SLP and I figured out a plan together. We did

overnight tube feedings that ended early enough in the night so that

she'd hopefully wake up somewhat hungry. Then we did only oral feeding

during the day.

Some dr's had suggested oral feeding at meals followed by a tube feeding

to " top off " whatever the child didn't take orally. But that didn't

make sense to us cuz then she'd never really get that feeling of

hunger. I don't know how we did it, but we did make the transition. At

the time, we gave Aubrie Pediasure instead of milk to get as many

calories in as possible. Now I wish we'd never given up the Pediasure

cuz she's still very small but now won't take the taste of it.

So-- Perhaps I didn't give you much specific help, but I hope I gave you

some evidence that it is possible to wean from the tube to oral

feeding. It will take work and it will be frustrating. In my

experience, I needed a supportive SLP to work with me since the dr's

weren't so helpful. Our docs didn't care so much if she ever ate

orally. They didn't care how she got it, they just wanted her to get

the nutrition. From a mom's point of view, the way the nutrition is

taken in is a huge issue.

Best of luck to you and welcome to the list. I'm sure you'll find many

helpful posts here.

Michele W

Aubrie's mom (6 yrs) CHaRgE

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may contact

CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

have you looked into getting Medicaid just for your charge child?

we get too much money from husbands income for family to be on

Medicaid but wesley qualifies for disabled income on his own income.

KayRena

Holweger wrote:

> Wow -- first of all let me thank everybody for all your replies. You

> all have been real helpful and I'm going to use your ideas. I'm going

> to answer questions all in one reply......

>

> Cameron uses a formula called Compleat which is a special formula just

> for tube feedings. We've tried Pediasure but Cam would always throw

> up with it. I've looked into WIC and Medicaid, but my husband makes

> too much money. Sometimes I just want to tell these people " If I made

> too much money, I wouldn't be asking you for help! " Our insurance

> does help us with the formula but we have a high deductible($4000 per

> person) and they pay very little on it. In fact we're having

> problems with the insurance company paying the correct amount.

>

> I've been looking into the vital-slim therapy lately. Alot of you

> mentioned that your child doesn't feel hunger with a g-tube. Cameron

> does b/c if we are late feeding him he gets very cranky and then he's

> fine after we feed him.

>

> Thanks again!!!!!!!!!!!!!!!!!!!

>

> Michele Westmaas wrote:

> -

> My daughter, Aubrie, had a Gtube for her first year and a half. She

> had

> it removed before her 2nd birthday. She also had failure to thrive,

> swallowing difficulties, and GE reflux. I would have to look back at

> my

> notes from the time for details. I remember thinking she'd never eat.

>

> She'd vomit just at the sight of the spoon. She never did master the

> suck-swallow-breath thing with the bottle but went directly to a sippy

>

> cup. When she first ate foods, she would pocket the difficult

> textures

> in between her lower lip and gum. I don't know how she could

> separate

> the hull from the popcorn, the meat from the veggies, etc, but she

> did.

> Then she'd spit the " yuckies " in a napkin. Eventually, she had less

> and

> less yuckies pocketed and finally was able to eat everything. There

> are

> very few foods that she does not manage fine now. In fact, I can't

> think of one off hand.

>

> We were stumped as to how to go from the tube to oral feeding. The

> ped

> didn't have any good suggestions except that she gave us her blessing

> to

> do whatever during the spring when we expected no ear infections and

> colds and could best afford any weight loss that might occur during

> the

> transition. So the SLP and I figured out a plan together. We did

> overnight tube feedings that ended early enough in the night so that

> she'd hopefully wake up somewhat hungry. Then we did only oral

> feeding

> during the day.

>

> Some dr's had suggested oral feeding at meals followed by a tube

> feeding

> to " top off " whatever the child didn't take orally. But that didn't

> make sense to us cuz then she'd never really get that feeling of

> hunger. I don't know how we did it, but we did make the transition.

> At

> the time, we gave Aubrie Pediasure instead of milk to get as many

> calories in as possible. Now I wish we'd never given up the Pediasure

>

> cuz she's still very small but now won't take the taste of it.

>

> So-- Perhaps I didn't give you much specific help, but I hope I gave

> you

> some evidence that it is possible to wean from the tube to oral

> feeding. It will take work and it will be frustrating. In my

> experience, I needed a supportive SLP to work with me since the dr's

> weren't so helpful. Our docs didn't care so much if she ever ate

> orally. They didn't care how she got it, they just wanted her to get

> the nutrition. From a mom's point of view, the way the nutrition is

> taken in is a huge issue.

>

> Best of luck to you and welcome to the list. I'm sure you'll find

> many

> helpful posts here.

>

> Michele W

> Aubrie's mom (6 yrs) CHaRgE

>

>

>

> Membership of this email support groups does not constitute membership

> in the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

have you looked into getting Medicaid just for your charge child?

we get too much money from husbands income for family to be on

Medicaid but wesley qualifies for disabled income on his own income.

KayRena

Holweger wrote:

> Wow -- first of all let me thank everybody for all your replies. You

> all have been real helpful and I'm going to use your ideas. I'm going

> to answer questions all in one reply......

>

> Cameron uses a formula called Compleat which is a special formula just

> for tube feedings. We've tried Pediasure but Cam would always throw

> up with it. I've looked into WIC and Medicaid, but my husband makes

> too much money. Sometimes I just want to tell these people " If I made

> too much money, I wouldn't be asking you for help! " Our insurance

> does help us with the formula but we have a high deductible($4000 per

> person) and they pay very little on it. In fact we're having

> problems with the insurance company paying the correct amount.

>

> I've been looking into the vital-slim therapy lately. Alot of you

> mentioned that your child doesn't feel hunger with a g-tube. Cameron

> does b/c if we are late feeding him he gets very cranky and then he's

> fine after we feed him.

>

> Thanks again!!!!!!!!!!!!!!!!!!!

>

> Michele Westmaas wrote:

> -

> My daughter, Aubrie, had a Gtube for her first year and a half. She

> had

> it removed before her 2nd birthday. She also had failure to thrive,

> swallowing difficulties, and GE reflux. I would have to look back at

> my

> notes from the time for details. I remember thinking she'd never eat.

>

> She'd vomit just at the sight of the spoon. She never did master the

> suck-swallow-breath thing with the bottle but went directly to a sippy

>

> cup. When she first ate foods, she would pocket the difficult

> textures

> in between her lower lip and gum. I don't know how she could

> separate

> the hull from the popcorn, the meat from the veggies, etc, but she

> did.

> Then she'd spit the " yuckies " in a napkin. Eventually, she had less

> and

> less yuckies pocketed and finally was able to eat everything. There

> are

> very few foods that she does not manage fine now. In fact, I can't

> think of one off hand.

>

> We were stumped as to how to go from the tube to oral feeding. The

> ped

> didn't have any good suggestions except that she gave us her blessing

> to

> do whatever during the spring when we expected no ear infections and

> colds and could best afford any weight loss that might occur during

> the

> transition. So the SLP and I figured out a plan together. We did

> overnight tube feedings that ended early enough in the night so that

> she'd hopefully wake up somewhat hungry. Then we did only oral

> feeding

> during the day.

>

> Some dr's had suggested oral feeding at meals followed by a tube

> feeding

> to " top off " whatever the child didn't take orally. But that didn't

> make sense to us cuz then she'd never really get that feeling of

> hunger. I don't know how we did it, but we did make the transition.

> At

> the time, we gave Aubrie Pediasure instead of milk to get as many

> calories in as possible. Now I wish we'd never given up the Pediasure

>

> cuz she's still very small but now won't take the taste of it.

>

> So-- Perhaps I didn't give you much specific help, but I hope I gave

> you

> some evidence that it is possible to wean from the tube to oral

> feeding. It will take work and it will be frustrating. In my

> experience, I needed a supportive SLP to work with me since the dr's

> weren't so helpful. Our docs didn't care so much if she ever ate

> orally. They didn't care how she got it, they just wanted her to get

> the nutrition. From a mom's point of view, the way the nutrition is

> taken in is a huge issue.

>

> Best of luck to you and welcome to the list. I'm sure you'll find

> many

> helpful posts here.

>

> Michele W

> Aubrie's mom (6 yrs) CHaRgE

>

>

>

> Membership of this email support groups does not constitute membership

> in the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

have you looked into getting Medicaid just for your charge child?

we get too much money from husbands income for family to be on

Medicaid but wesley qualifies for disabled income on his own income.

KayRena

Holweger wrote:

> Wow -- first of all let me thank everybody for all your replies. You

> all have been real helpful and I'm going to use your ideas. I'm going

> to answer questions all in one reply......

>

> Cameron uses a formula called Compleat which is a special formula just

> for tube feedings. We've tried Pediasure but Cam would always throw

> up with it. I've looked into WIC and Medicaid, but my husband makes

> too much money. Sometimes I just want to tell these people " If I made

> too much money, I wouldn't be asking you for help! " Our insurance

> does help us with the formula but we have a high deductible($4000 per

> person) and they pay very little on it. In fact we're having

> problems with the insurance company paying the correct amount.

>

> I've been looking into the vital-slim therapy lately. Alot of you

> mentioned that your child doesn't feel hunger with a g-tube. Cameron

> does b/c if we are late feeding him he gets very cranky and then he's

> fine after we feed him.

>

> Thanks again!!!!!!!!!!!!!!!!!!!

>

> Michele Westmaas wrote:

> -

> My daughter, Aubrie, had a Gtube for her first year and a half. She

> had

> it removed before her 2nd birthday. She also had failure to thrive,

> swallowing difficulties, and GE reflux. I would have to look back at

> my

> notes from the time for details. I remember thinking she'd never eat.

>

> She'd vomit just at the sight of the spoon. She never did master the

> suck-swallow-breath thing with the bottle but went directly to a sippy

>

> cup. When she first ate foods, she would pocket the difficult

> textures

> in between her lower lip and gum. I don't know how she could

> separate

> the hull from the popcorn, the meat from the veggies, etc, but she

> did.

> Then she'd spit the " yuckies " in a napkin. Eventually, she had less

> and

> less yuckies pocketed and finally was able to eat everything. There

> are

> very few foods that she does not manage fine now. In fact, I can't

> think of one off hand.

>

> We were stumped as to how to go from the tube to oral feeding. The

> ped

> didn't have any good suggestions except that she gave us her blessing

> to

> do whatever during the spring when we expected no ear infections and

> colds and could best afford any weight loss that might occur during

> the

> transition. So the SLP and I figured out a plan together. We did

> overnight tube feedings that ended early enough in the night so that

> she'd hopefully wake up somewhat hungry. Then we did only oral

> feeding

> during the day.

>

> Some dr's had suggested oral feeding at meals followed by a tube

> feeding

> to " top off " whatever the child didn't take orally. But that didn't

> make sense to us cuz then she'd never really get that feeling of

> hunger. I don't know how we did it, but we did make the transition.

> At

> the time, we gave Aubrie Pediasure instead of milk to get as many

> calories in as possible. Now I wish we'd never given up the Pediasure

>

> cuz she's still very small but now won't take the taste of it.

>

> So-- Perhaps I didn't give you much specific help, but I hope I gave

> you

> some evidence that it is possible to wean from the tube to oral

> feeding. It will take work and it will be frustrating. In my

> experience, I needed a supportive SLP to work with me since the dr's

> weren't so helpful. Our docs didn't care so much if she ever ate

> orally. They didn't care how she got it, they just wanted her to get

> the nutrition. From a mom's point of view, the way the nutrition is

> taken in is a huge issue.

>

> Best of luck to you and welcome to the list. I'm sure you'll find

> many

> helpful posts here.

>

> Michele W

> Aubrie's mom (6 yrs) CHaRgE

>

>

>

> Membership of this email support groups does not constitute membership

> in the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

,

Have you ever thought of making Cameron's formula yourself? It's a bit of

work, but we've been doing it so long now, it's just like making supper for

everyone else....if you want any adivce on it, let me know...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://ca.geocities.com/weirfamilyrogers

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: Hello & Need some advice

Wow -- first of all let me thank everybody for all your replies. You all

have been real helpful and I'm going to use your ideas. I'm going to answer

questions all in one reply......

Cameron uses a formula called Compleat which is a special formula just for

tube feedings. We've tried Pediasure but Cam would always throw up with it.

I've looked into WIC and Medicaid, but my husband makes too much money.

Sometimes I just want to tell these people " If I made too much money, I

wouldn't be asking you for help! " Our insurance does help us with the

formula but we have a high deductible($4000 per person) and they pay very

little on it. In fact we're having problems with the insurance company

paying the correct amount.

I've been looking into the vital-slim therapy lately. Alot of you

mentioned that your child doesn't feel hunger with a g-tube. Cameron does

b/c if we are late feeding him he gets very cranky and then he's fine after

we feed him.

Thanks again!!!!!!!!!!!!!!!!!!!

Michele Westmaas wrote:

-

My daughter, Aubrie, had a Gtube for her first year and a half. She had

it removed before her 2nd birthday. She also had failure to thrive,

swallowing difficulties, and GE reflux. I would have to look back at my

notes from the time for details. I remember thinking she'd never eat.

She'd vomit just at the sight of the spoon. She never did master the

suck-swallow-breath thing with the bottle but went directly to a sippy

cup. When she first ate foods, she would pocket the difficult textures

in between her lower lip and gum. I don't know how she could separate

the hull from the popcorn, the meat from the veggies, etc, but she did.

Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

less yuckies pocketed and finally was able to eat everything. There are

very few foods that she does not manage fine now. In fact, I can't

think of one off hand.

We were stumped as to how to go from the tube to oral feeding. The ped

didn't have any good suggestions except that she gave us her blessing to

do whatever during the spring when we expected no ear infections and

colds and could best afford any weight loss that might occur during the

transition. So the SLP and I figured out a plan together. We did

overnight tube feedings that ended early enough in the night so that

she'd hopefully wake up somewhat hungry. Then we did only oral feeding

during the day.

Some dr's had suggested oral feeding at meals followed by a tube feeding

to " top off " whatever the child didn't take orally. But that didn't

make sense to us cuz then she'd never really get that feeling of

hunger. I don't know how we did it, but we did make the transition. At

the time, we gave Aubrie Pediasure instead of milk to get as many

calories in as possible. Now I wish we'd never given up the Pediasure

cuz she's still very small but now won't take the taste of it.

So-- Perhaps I didn't give you much specific help, but I hope I gave you

some evidence that it is possible to wean from the tube to oral

feeding. It will take work and it will be frustrating. In my

experience, I needed a supportive SLP to work with me since the dr's

weren't so helpful. Our docs didn't care so much if she ever ate

orally. They didn't care how she got it, they just wanted her to get

the nutrition. From a mom's point of view, the way the nutrition is

taken in is a huge issue.

Best of luck to you and welcome to the list. I'm sure you'll find many

helpful posts here.

Michele W

Aubrie's mom (6 yrs) CHaRgE

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

,

Have you ever thought of making Cameron's formula yourself? It's a bit of

work, but we've been doing it so long now, it's just like making supper for

everyone else....if you want any adivce on it, let me know...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://ca.geocities.com/weirfamilyrogers

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: Hello & Need some advice

Wow -- first of all let me thank everybody for all your replies. You all

have been real helpful and I'm going to use your ideas. I'm going to answer

questions all in one reply......

Cameron uses a formula called Compleat which is a special formula just for

tube feedings. We've tried Pediasure but Cam would always throw up with it.

I've looked into WIC and Medicaid, but my husband makes too much money.

Sometimes I just want to tell these people " If I made too much money, I

wouldn't be asking you for help! " Our insurance does help us with the

formula but we have a high deductible($4000 per person) and they pay very

little on it. In fact we're having problems with the insurance company

paying the correct amount.

I've been looking into the vital-slim therapy lately. Alot of you

mentioned that your child doesn't feel hunger with a g-tube. Cameron does

b/c if we are late feeding him he gets very cranky and then he's fine after

we feed him.

Thanks again!!!!!!!!!!!!!!!!!!!

Michele Westmaas wrote:

-

My daughter, Aubrie, had a Gtube for her first year and a half. She had

it removed before her 2nd birthday. She also had failure to thrive,

swallowing difficulties, and GE reflux. I would have to look back at my

notes from the time for details. I remember thinking she'd never eat.

She'd vomit just at the sight of the spoon. She never did master the

suck-swallow-breath thing with the bottle but went directly to a sippy

cup. When she first ate foods, she would pocket the difficult textures

in between her lower lip and gum. I don't know how she could separate

the hull from the popcorn, the meat from the veggies, etc, but she did.

Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

less yuckies pocketed and finally was able to eat everything. There are

very few foods that she does not manage fine now. In fact, I can't

think of one off hand.

We were stumped as to how to go from the tube to oral feeding. The ped

didn't have any good suggestions except that she gave us her blessing to

do whatever during the spring when we expected no ear infections and

colds and could best afford any weight loss that might occur during the

transition. So the SLP and I figured out a plan together. We did

overnight tube feedings that ended early enough in the night so that

she'd hopefully wake up somewhat hungry. Then we did only oral feeding

during the day.

Some dr's had suggested oral feeding at meals followed by a tube feeding

to " top off " whatever the child didn't take orally. But that didn't

make sense to us cuz then she'd never really get that feeling of

hunger. I don't know how we did it, but we did make the transition. At

the time, we gave Aubrie Pediasure instead of milk to get as many

calories in as possible. Now I wish we'd never given up the Pediasure

cuz she's still very small but now won't take the taste of it.

So-- Perhaps I didn't give you much specific help, but I hope I gave you

some evidence that it is possible to wean from the tube to oral

feeding. It will take work and it will be frustrating. In my

experience, I needed a supportive SLP to work with me since the dr's

weren't so helpful. Our docs didn't care so much if she ever ate

orally. They didn't care how she got it, they just wanted her to get

the nutrition. From a mom's point of view, the way the nutrition is

taken in is a huge issue.

Best of luck to you and welcome to the list. I'm sure you'll find many

helpful posts here.

Michele W

Aubrie's mom (6 yrs) CHaRgE

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

,

Have you ever thought of making Cameron's formula yourself? It's a bit of

work, but we've been doing it so long now, it's just like making supper for

everyone else....if you want any adivce on it, let me know...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://ca.geocities.com/weirfamilyrogers

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: Hello & Need some advice

Wow -- first of all let me thank everybody for all your replies. You all

have been real helpful and I'm going to use your ideas. I'm going to answer

questions all in one reply......

Cameron uses a formula called Compleat which is a special formula just for

tube feedings. We've tried Pediasure but Cam would always throw up with it.

I've looked into WIC and Medicaid, but my husband makes too much money.

Sometimes I just want to tell these people " If I made too much money, I

wouldn't be asking you for help! " Our insurance does help us with the

formula but we have a high deductible($4000 per person) and they pay very

little on it. In fact we're having problems with the insurance company

paying the correct amount.

I've been looking into the vital-slim therapy lately. Alot of you

mentioned that your child doesn't feel hunger with a g-tube. Cameron does

b/c if we are late feeding him he gets very cranky and then he's fine after

we feed him.

Thanks again!!!!!!!!!!!!!!!!!!!

Michele Westmaas wrote:

-

My daughter, Aubrie, had a Gtube for her first year and a half. She had

it removed before her 2nd birthday. She also had failure to thrive,

swallowing difficulties, and GE reflux. I would have to look back at my

notes from the time for details. I remember thinking she'd never eat.

She'd vomit just at the sight of the spoon. She never did master the

suck-swallow-breath thing with the bottle but went directly to a sippy

cup. When she first ate foods, she would pocket the difficult textures

in between her lower lip and gum. I don't know how she could separate

the hull from the popcorn, the meat from the veggies, etc, but she did.

Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

less yuckies pocketed and finally was able to eat everything. There are

very few foods that she does not manage fine now. In fact, I can't

think of one off hand.

We were stumped as to how to go from the tube to oral feeding. The ped

didn't have any good suggestions except that she gave us her blessing to

do whatever during the spring when we expected no ear infections and

colds and could best afford any weight loss that might occur during the

transition. So the SLP and I figured out a plan together. We did

overnight tube feedings that ended early enough in the night so that

she'd hopefully wake up somewhat hungry. Then we did only oral feeding

during the day.

Some dr's had suggested oral feeding at meals followed by a tube feeding

to " top off " whatever the child didn't take orally. But that didn't

make sense to us cuz then she'd never really get that feeling of

hunger. I don't know how we did it, but we did make the transition. At

the time, we gave Aubrie Pediasure instead of milk to get as many

calories in as possible. Now I wish we'd never given up the Pediasure

cuz she's still very small but now won't take the taste of it.

So-- Perhaps I didn't give you much specific help, but I hope I gave you

some evidence that it is possible to wean from the tube to oral

feeding. It will take work and it will be frustrating. In my

experience, I needed a supportive SLP to work with me since the dr's

weren't so helpful. Our docs didn't care so much if she ever ate

orally. They didn't care how she got it, they just wanted her to get

the nutrition. From a mom's point of view, the way the nutrition is

taken in is a huge issue.

Best of luck to you and welcome to the list. I'm sure you'll find many

helpful posts here.

Michele W

Aubrie's mom (6 yrs) CHaRgE

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

,

This is where we want to go with Dylan, every time we have started with any

change he has not done well medically so we maintain the status quo, but I

KNOW he needs to get off this infant formula.

Any tips on how you transitioned would be great.

Kim L

> ,

> Have you ever thought of making Cameron's formula yourself? It's a bit of

> work, but we've been doing it so long now, it's just like making supper for

> everyone else....if you want any adivce on it, let me know...

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

> New Brunswick, Canada

> Weir homepage: http://ca.geocities.com/weirfamilyrogers

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

>

> Re: Hello & Need some advice

>

>

> Wow -- first of all let me thank everybody for all your replies. You all

> have been real helpful and I'm going to use your ideas. I'm going to answer

> questions all in one reply......

>

> Cameron uses a formula called Compleat which is a special formula just for

> tube feedings. We've tried Pediasure but Cam would always throw up with it.

> I've looked into WIC and Medicaid, but my husband makes too much money.

> Sometimes I just want to tell these people " If I made too much money, I

> wouldn't be asking you for help! " Our insurance does help us with the

> formula but we have a high deductible($4000 per person) and they pay very

> little on it. In fact we're having problems with the insurance company

> paying the correct amount.

>

> I've been looking into the vital-slim therapy lately. Alot of you

> mentioned that your child doesn't feel hunger with a g-tube. Cameron does

> b/c if we are late feeding him he gets very cranky and then he's fine after

> we feed him.

>

> Thanks again!!!!!!!!!!!!!!!!!!!

>

> Michele Westmaas wrote:

> -

> My daughter, Aubrie, had a Gtube for her first year and a half. She had

> it removed before her 2nd birthday. She also had failure to thrive,

> swallowing difficulties, and GE reflux. I would have to look back at my

> notes from the time for details. I remember thinking she'd never eat.

> She'd vomit just at the sight of the spoon. She never did master the

> suck-swallow-breath thing with the bottle but went directly to a sippy

> cup. When she first ate foods, she would pocket the difficult textures

> in between her lower lip and gum. I don't know how she could separate

> the hull from the popcorn, the meat from the veggies, etc, but she did.

> Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

> less yuckies pocketed and finally was able to eat everything. There are

> very few foods that she does not manage fine now. In fact, I can't

> think of one off hand.

>

> We were stumped as to how to go from the tube to oral feeding. The ped

> didn't have any good suggestions except that she gave us her blessing to

> do whatever during the spring when we expected no ear infections and

> colds and could best afford any weight loss that might occur during the

> transition. So the SLP and I figured out a plan together. We did

> overnight tube feedings that ended early enough in the night so that

> she'd hopefully wake up somewhat hungry. Then we did only oral feeding

> during the day.

>

> Some dr's had suggested oral feeding at meals followed by a tube feeding

> to " top off " whatever the child didn't take orally. But that didn't

> make sense to us cuz then she'd never really get that feeling of

> hunger. I don't know how we did it, but we did make the transition. At

> the time, we gave Aubrie Pediasure instead of milk to get as many

> calories in as possible. Now I wish we'd never given up the Pediasure

> cuz she's still very small but now won't take the taste of it.

>

> So-- Perhaps I didn't give you much specific help, but I hope I gave you

> some evidence that it is possible to wean from the tube to oral

> feeding. It will take work and it will be frustrating. In my

> experience, I needed a supportive SLP to work with me since the dr's

> weren't so helpful. Our docs didn't care so much if she ever ate

> orally. They didn't care how she got it, they just wanted her to get

> the nutrition. From a mom's point of view, the way the nutrition is

> taken in is a huge issue.

>

> Best of luck to you and welcome to the list. I'm sure you'll find many

> helpful posts here.

>

> Michele W

> Aubrie's mom (6 yrs) CHaRgE

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

,

A friend of mine always tells me I need to make our own formula, but I never

thought it could be done. What is your process? How do you know if your child

is getting enough in calories? We've been afraid for Cameron losing weight if

we were to cut back on formula and " starve him " so he eats. At four years old

he only weighs 30 pounds. I would still like to know how you make your own

formula.

Kim Lauger wrote:

,

This is where we want to go with Dylan, every time we have started with any

change he has not done well medically so we maintain the status quo, but I

KNOW he needs to get off this infant formula.

Any tips on how you transitioned would be great.

Kim L

> ,

> Have you ever thought of making Cameron's formula yourself? It's a bit of

> work, but we've been doing it so long now, it's just like making supper for

> everyone else....if you want any adivce on it, let me know...

> Weir

> Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

> New Brunswick, Canada

> Weir homepage: http://ca.geocities.com/weirfamilyrogers

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

>

> Re: Hello & Need some advice

>

>

> Wow -- first of all let me thank everybody for all your replies. You all

> have been real helpful and I'm going to use your ideas. I'm going to answer

> questions all in one reply......

>

> Cameron uses a formula called Compleat which is a special formula just for

> tube feedings. We've tried Pediasure but Cam would always throw up with it.

> I've looked into WIC and Medicaid, but my husband makes too much money.

> Sometimes I just want to tell these people " If I made too much money, I

> wouldn't be asking you for help! " Our insurance does help us with the

> formula but we have a high deductible($4000 per person) and they pay very

> little on it. In fact we're having problems with the insurance company

> paying the correct amount.

>

> I've been looking into the vital-slim therapy lately. Alot of you

> mentioned that your child doesn't feel hunger with a g-tube. Cameron does

> b/c if we are late feeding him he gets very cranky and then he's fine after

> we feed him.

>

> Thanks again!!!!!!!!!!!!!!!!!!!

>

> Michele Westmaas wrote:

> -

> My daughter, Aubrie, had a Gtube for her first year and a half. She had

> it removed before her 2nd birthday. She also had failure to thrive,

> swallowing difficulties, and GE reflux. I would have to look back at my

> notes from the time for details. I remember thinking she'd never eat.

> She'd vomit just at the sight of the spoon. She never did master the

> suck-swallow-breath thing with the bottle but went directly to a sippy

> cup. When she first ate foods, she would pocket the difficult textures

> in between her lower lip and gum. I don't know how she could separate

> the hull from the popcorn, the meat from the veggies, etc, but she did.

> Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

> less yuckies pocketed and finally was able to eat everything. There are

> very few foods that she does not manage fine now. In fact, I can't

> think of one off hand.

>

> We were stumped as to how to go from the tube to oral feeding. The ped

> didn't have any good suggestions except that she gave us her blessing to

> do whatever during the spring when we expected no ear infections and

> colds and could best afford any weight loss that might occur during the

> transition. So the SLP and I figured out a plan together. We did

> overnight tube feedings that ended early enough in the night so that

> she'd hopefully wake up somewhat hungry. Then we did only oral feeding

> during the day.

>

> Some dr's had suggested oral feeding at meals followed by a tube feeding

> to " top off " whatever the child didn't take orally. But that didn't

> make sense to us cuz then she'd never really get that feeling of

> hunger. I don't know how we did it, but we did make the transition. At

> the time, we gave Aubrie Pediasure instead of milk to get as many

> calories in as possible. Now I wish we'd never given up the Pediasure

> cuz she's still very small but now won't take the taste of it.

>

> So-- Perhaps I didn't give you much specific help, but I hope I gave you

> some evidence that it is possible to wean from the tube to oral

> feeding. It will take work and it will be frustrating. In my

> experience, I needed a supportive SLP to work with me since the dr's

> weren't so helpful. Our docs didn't care so much if she ever ate

> orally. They didn't care how she got it, they just wanted her to get

> the nutrition. From a mom's point of view, the way the nutrition is

> taken in is a huge issue.

>

> Best of luck to you and welcome to the list. I'm sure you'll find many

> helpful posts here.

>

> Michele W

> Aubrie's mom (6 yrs) CHaRgE

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

How does Wesley qualify on his own income? Cameron is only four years old????

kayrenanew wrote:have you looked into getting

Medicaid just for your charge child?

we get too much money from husbands income for family to be on

Medicaid but wesley qualifies for disabled income on his own income.

KayRena

Holweger wrote:

> Wow -- first of all let me thank everybody for all your replies. You

> all have been real helpful and I'm going to use your ideas. I'm going

> to answer questions all in one reply......

>

> Cameron uses a formula called Compleat which is a special formula just

> for tube feedings. We've tried Pediasure but Cam would always throw

> up with it. I've looked into WIC and Medicaid, but my husband makes

> too much money. Sometimes I just want to tell these people " If I made

> too much money, I wouldn't be asking you for help! " Our insurance

> does help us with the formula but we have a high deductible($4000 per

> person) and they pay very little on it. In fact we're having

> problems with the insurance company paying the correct amount.

>

> I've been looking into the vital-slim therapy lately. Alot of you

> mentioned that your child doesn't feel hunger with a g-tube. Cameron

> does b/c if we are late feeding him he gets very cranky and then he's

> fine after we feed him.

>

> Thanks again!!!!!!!!!!!!!!!!!!!

>

> Michele Westmaas wrote:

> -

> My daughter, Aubrie, had a Gtube for her first year and a half. She

> had

> it removed before her 2nd birthday. She also had failure to thrive,

> swallowing difficulties, and GE reflux. I would have to look back at

> my

> notes from the time for details. I remember thinking she'd never eat.

>

> She'd vomit just at the sight of the spoon. She never did master the

> suck-swallow-breath thing with the bottle but went directly to a sippy

>

> cup. When she first ate foods, she would pocket the difficult

> textures

> in between her lower lip and gum. I don't know how she could

> separate

> the hull from the popcorn, the meat from the veggies, etc, but she

> did.

> Then she'd spit the " yuckies " in a napkin. Eventually, she had less

> and

> less yuckies pocketed and finally was able to eat everything. There

> are

> very few foods that she does not manage fine now. In fact, I can't

> think of one off hand.

>

> We were stumped as to how to go from the tube to oral feeding. The

> ped

> didn't have any good suggestions except that she gave us her blessing

> to

> do whatever during the spring when we expected no ear infections and

> colds and could best afford any weight loss that might occur during

> the

> transition. So the SLP and I figured out a plan together. We did

> overnight tube feedings that ended early enough in the night so that

> she'd hopefully wake up somewhat hungry. Then we did only oral

> feeding

> during the day.

>

> Some dr's had suggested oral feeding at meals followed by a tube

> feeding

> to " top off " whatever the child didn't take orally. But that didn't

> make sense to us cuz then she'd never really get that feeling of

> hunger. I don't know how we did it, but we did make the transition.

> At

> the time, we gave Aubrie Pediasure instead of milk to get as many

> calories in as possible. Now I wish we'd never given up the Pediasure

>

> cuz she's still very small but now won't take the taste of it.

>

> So-- Perhaps I didn't give you much specific help, but I hope I gave

> you

> some evidence that it is possible to wean from the tube to oral

> feeding. It will take work and it will be frustrating. In my

> experience, I needed a supportive SLP to work with me since the dr's

> weren't so helpful. Our docs didn't care so much if she ever ate

> orally. They didn't care how she got it, they just wanted her to get

> the nutrition. From a mom's point of view, the way the nutrition is

> taken in is a huge issue.

>

> Best of luck to you and welcome to the list. I'm sure you'll find

> many

> helpful posts here.

>

> Michele W

> Aubrie's mom (6 yrs) CHaRgE

>

>

>

> Membership of this email support groups does not constitute membership

> in the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>