Re: Intensive Feeding Therapy

[Guest guest]

Thank you , and Merry Christmas!

Deborah

JULIE HASSELBERGER wrote:

Feeding therapy was successful for too, when he was younger and

able to eat pureed and semi solids. I think it may have bought us some time with

feeding orally, but now at age 10 his risk of aspiration FAR outweighs the

ability to feed orally at all.

We had specialists at school, clinics, and a very aggressive oral motor

stimulation regimen from age 2 until about age 6. We made the decision to STOP

the feeds, before the life threatening pneumonia... because in our eyes it wasnt

a risk worth taking.

Have you had Barrium swallow tests to make sure he does not aspirate? Just be

careful, did well too..and suddenly he started thrusting and choking and

just stopped showing interest in food.

Thankfully... the G tube was always there to support him, when he got too tired

or too upset to eat.

had his g tube (mick ey button) put in when he was two years old... it is

a blessing, a tremendous help an relief, and when you have child who has a risk

of pneumonia, or who struggles sometimes to eat... it provides the child with

much needed nutrition.

As a matter of fact, our GI group had advised us that having the G tube would

actually HELP his feedings...because he would be stronger, have more energy etc.

And they were right. The minute we put the g tube in, when he was 2... he was

more alert, had more energy, and gained weight (especially because we could run

a slow drip all night long)

I just hear in so many people's voices a hesitancy to have a g tube put in...and

then I hear that it is a " last ditch effort " and that confuses the heck out of

me.

Sometimes they grow out of needing a G tube... but in our case, 's ability

to protect his airway slowly diminished from age 6 until today... I dont know

why, especially with all the medications....people wouldnt want a g tube.

It has only improved, and helped his life. Just be careful...don't take the risk

of having the child aspriate first, and risk death... just to be able to eat.

is 100% g tube fed...and from this point on...so they tell me... probably

always will. But it is not a bad thing....

Deborah is wrote:

Thank you .

We are considering, but it will take a lot of effort from the entire family,

that is why I would like to hear anything from people that tried it.

Deborah

ich wrote:

I do not know if I would consider ours intensive feeding therapy. But my son

Evan who has BPP has had feeding therapy since March of 2006. He is seen once a

week in our home. I would say that while I have not seen huge improvements there

have been some changes for the better.

Evan has to have all of his liquids thickened due to his high aspiration risk.

He has learned to cough well when he has food or liquids stuck in his throat. He

has learned to take bites of food and when he is prompted can make an effort to

chew a little. He used to push most of the food put in his mouth out with his

toungue, and that has gotten much better and if we use a mirror and show him

when something is falling out then sometimes he can use his lip or fingers to

get it back in his mouth.

So I would say that his biggest improvements are - keeping his food in his mouth

better and being able to have a productive cough.

Around March- April of 2006 there was definite consideration of a G-tube for

Evan due to him getting aspiration pneumonia 3 times in a row, but the

thickening of liquids definitley has helped in that. Now the only way he will

get a tube is if he has a life threatening pneumonia.

I would say that feeding therapy has been successful and since Evan has turned 3

the school district is paying for it to continue which is so great. I think that

Evan will always have feeding issues and I hope that someday we can communicate

enough with him to help him learn to chew and keep things in his mouth better.

deborah_baccan wrote:

Has anyone tried an Intensive Feeding Therapy Program? What was the

outcome?

Some hospitals offer them, I know of St. phs in NJ, All Children's

in ST. sburg, FL, and the Kluge Children's Rehabilitation Center

at the University of Virginia.

They target children that are tube fed or have feeding problems.

Thanks,

Deborah

Mom 2 Evan Left Spastic Hemiplegia 3yrs old, 6.5yrs nda and SM to

15.5yrs

www.justinichfamily.blogspot.com

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[Guest guest]

We went to Our Children's House at Baylor. It was a six week, in patient

program. They got our son from eating nothing to getting 100% of his nutrition

by mouth. Great people and a great program.

-Glenn

Intensive Feeding Therapy

Has anyone tried an Intensive Feeding Therapy Program? What was the

outcome?

Some hospitals offer them, I know of St. phs in NJ, All Children's

in ST. sburg, FL, and the Kluge Children's Rehabilitation Center

at the University of Virginia.

They target children that are tube fed or have feeding problems.

Thanks,

Deborah

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[Guest guest]

Hi Glenn,

can you tell me a little more about the in patient program. My son is 5 months

old born with vocal cord paralysis and unilateral non-genetic polymicrogyria. We

opted for a trach about a week after he was born because of the vocal cord

paralysis. He has been home from the NICU since the middle of October. We have

been taking him to a speech therapist (swallowing and feeding specialist) at

CHildren's Hospital in St.Louis once a week. We've had a lot of improvement, but

would love to have him off the g-tube completely. Any input would gratelt be

appreciated!

(mother of unilateral PMG 5months old)

Glenn Moses wrote:

We went to Our Children's House at Baylor. It was a six week, in

patient program. They got our son from eating nothing to getting 100% of his

nutrition by mouth. Great people and a great program.

-Glenn

Intensive Feeding Therapy

Has anyone tried an Intensive Feeding Therapy Program? What was the

outcome?

Some hospitals offer them, I know of St. phs in NJ, All Children's

in ST. sburg, FL, and the Kluge Children's Rehabilitation Center

at the University of Virginia.

They target children that are tube fed or have feeding problems.

Thanks,

Deborah

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[Guest guest]

,

Our Owen has the same unilateral non-genetic polymicrogyria. He has a g-tube

but no trach. Our Children's House has a program specifically for feeding. You

can check out their web site, here: http://www.baylorhealth.com/locations/och/

They first saw Owen at about two years for an initial evaluation and then came

back when he was three-and-a-half for the in-patient program. It's an amazing

program. Unlike some of the programs we looked it, it is very individual and

they worked hard to find what would work for Owen. Once they got it working

they worked hard to train mom and I so that we can do it at home. Along with

the feeding program Owen received PT/OT/Speech each day (except Sunday, only

the feeding program on that day). His growth during this six weeks was

tremendous, not just in his feeding.

Owen is still on baby foods (he'll be five this Friday) but he gets all of his

nutrition by mouth. We still have the g-tube because he won't drink fluids.

Owen got his g-tube at six months and for most of that time mom and I really

wanted to see him off of it. As time has gone on it's become secondary to many

of the other issues we face. I wish you the best of luck.

Glenn

Intensive Feeding Therapy

Has anyone tried an Intensive Feeding Therapy Program? What was the

outcome?

Some hospitals offer them, I know of St. phs in NJ, All Children's

in ST. sburg, FL, and the Kluge Children's Rehabilitation Center

at the University of Virginia.

They target children that are tube fed or have feeding problems.

Thanks,

Deborah

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[Guest guest]

Glen,

Wow! got accepted at the All Children's Program. We will start Feb

4th. I can't wait.

Deborah

Glenn Moses wrote:

We went to Our Children's House at Baylor. It was a six week, in

patient program. They got our son from eating nothing to getting 100% of his

nutrition by mouth. Great people and a great program.

-Glenn

Intensive Feeding Therapy

Has anyone tried an Intensive Feeding Therapy Program? What was the

outcome?

Some hospitals offer them, I know of St. phs in NJ, All Children's

in ST. sburg, FL, and the Kluge Children's Rehabilitation Center

at the University of Virginia.

They target children that are tube fed or have feeding problems.

Thanks,

Deborah

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[Guest guest]

In Arizona we have feeding specialists who come to the

house or treat in office, check with your insurance or

DDD worker.

--- Deborah is

wrote:

> Glen,

> Wow! got accepted at the All Children's

> Program. We will start Feb 4th. I can't wait.

>

> Deborah

>

> Glenn Moses wrote:

> We went to Our Children's House at Baylor.

> It was a six week, in patient program. They got our

> son from eating nothing to getting 100% of his

> nutrition by mouth. Great people and a great

> program.

>

> -Glenn

>

> Intensive Feeding Therapy

>

> Has anyone tried an Intensive Feeding Therapy

> Program? What was the

>

> outcome?

>

> Some hospitals offer them, I know of St. phs in

> NJ, All Children's

>

> in ST. sburg, FL, and the Kluge Children's

> Rehabilitation Center

>

> at the University of Virginia.

>

> They target children that are tube fed or have

> feeding problems.

>

> Thanks,

>

> Deborah

>

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[Guest guest]

can you send me more on this speech therapyplease erica from me

> We went to Our Children's House at Baylor.

> It was a six week, in patient program. They got our

> son from eating nothing to getting 100% of his

> nutrition by mouth. Great people and a great

> program.

>

> -Glenn

>

> Intensive Feeding Therapy

>

> Has anyone tried an Intensive Feeding Therapy

> Program? What was the

>

> outcome?

>

> Some hospitals offer them, I know of St. phs in

> NJ, All Children's

>

> in ST. sburg, FL, and the Kluge Children's

> Rehabilitation Center

>

> at the University of Virginia.

>

> They target children that are tube fed or have

> feeding problems.

>

> Thanks,

>

> Deborah

>

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