Re: Hello & Need some advice

August 11, 2004

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

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

please contact marion@... or visit

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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!

August 11, 2004

Hello and welcome

Kay

Hello & Need some advice

> 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!

>

August 11, 2004