RE: hope for those with eating difficulties

August 28, 2002

,

Wow! June 7th...a day of wonderful excitement! Congratulations! What a

great story to never give up!

Deedee, Bryce's Mom

August 28, 2002

,

Wow! June 7th...a day of wonderful excitement! Congratulations! What a

great story to never give up!

Deedee, Bryce's Mom

August 28, 2002

,

I am so pleased to hear of Karlee's progress. What is she eating for meals?

Wow, that gives me the chills that you were right all this time. I think

Doctors in general should fine tune their ability to be respectful of

patients' opinions and perceptions.

At 11:00 PM 8/27/02 -0500, you wrote:

>My daugther Karlee is 14. She had a TEF repair, tube placement,and

>fundoplication all within the first 3 weeks of life. She also had a

>choanal atresia,with that surgical repair stopping any desire to suck.

>

>By the time we fought through oral sensitivity problems we found that food

>just didn't go down due to very reduced peristalsis and a tight wrap.

>

>Five years ago she developed pain around the button site. We suspected

>that the button may be rubbing on a rib. We visited 4 different medical

>facilities over that period of time, before finding someone who wanted to

>address the problem. The first 3 facilities said the pain around the

>button was caused by a variety of things, none being the button rubbing on

>a rub.

>

>To shorten this long story we found a surgeon who said a 14 year old

>cognitive child should be eating. He dilated the esophagus 3

>times. Karlee's eating improved. June 7, 2002 was the last time she

>connected to a feeding pump.

>

>We hope to have the button removed next month as this surgeon says it is

>rubbing on a rib - causing the pains she has had over the past 5 years.

>

>There were times we wondered if her eating would ever improve enough to

>get rid of the button. She has to eat many small meals in a day but she

>had maintained her weight.

>

>It took 14 years but we have finally gotten rid of one more medical

>issue... never give up hope!

>

> from IL

August 28, 2002

,

Isn't it amazing how the medical profession can ignore the

parents info? My Mark had a g tube for 11 years. He also had a TEF repair,

and a nissen. He still will have trouble at times with his ground diet. But

he eats now it was a long road. He loves steak (ground up). I am an RN and

wasn't when he was born but I don't tell Dr's or their nurses that right

away.

August 28, 2002

,

Isn't it amazing how the medical profession can ignore the

parents info? My Mark had a g tube for 11 years. He also had a TEF repair,

and a nissen. He still will have trouble at times with his ground diet. But

he eats now it was a long road. He loves steak (ground up). I am an RN and

wasn't when he was born but I don't tell Dr's or their nurses that right

away.

August 28, 2002

My daughter Hillary is 11. She had a TEF repair and tube placement also

within the first 3 days of life. She also had choanal atresia/stenosis

repair (x's 3). She would not eat foods orally until we had 6 esophagus

dilitations done. Once those were done, she ate everything. The only foods

she does have some problems with are ketchup (which she absolutely loves),

chocolate (will take it or leave it) and vanilla ice cream. After eating

those foods, the saliva in her throat seems to thicken and she has somewhat

of an annoying cough or clearing of the throat.

hope for those with eating difficulties

My daugther Karlee is 14. She had a TEF repair, tube placement,and

fundoplication all within the first 3 weeks of life. She also had a choanal

atresia,with that surgical repair stopping any desire to suck.

By the time we fought through oral sensitivity problems we found that food

just didn't go down due to very reduced peristalsis and a tight wrap.

Five years ago she developed pain around the button site. We suspected that

the button may be rubbing on a rib. We visited 4 different medical

facilities over that period of time, before finding someone who wanted to

address the problem. The first 3 facilities said the pain around the button

was caused by a variety of things, none being the button rubbing on a rub.

To shorten this long story we found a surgeon who said a 14 year old

cognitive child should be eating. He dilated the esophagus 3 times.

Karlee's eating improved. June 7, 2002 was the last time she connected to a

feeding pump.

We hope to have the button removed next month as this surgeon says it is

rubbing on a rib - causing the pains she has had over the past 5 years.

There were times we wondered if her eating would ever improve enough to get

rid of the button. She has to eat many small meals in a day but she had

maintained her weight.

It took 14 years but we have finally gotten rid of one more medical issue...

never give up hope!

from IL

August 28, 2002

Thank you for sharing this accomplishment. Your story

is amazing, and should give hope to many of us.

--- Ludwig wrote:

> My daugther Karlee is 14. She had a TEF repair,

> tube placement,and fundoplication all within the

> first 3 weeks of life. She also had a choanal

> atresia,with that surgical repair stopping any

> desire to suck.

>

> By the time we fought through oral sensitivity

> problems we found that food just didn't go down due

> to very reduced peristalsis and a tight wrap.

>

> Five years ago she developed pain around the button

> site. We suspected that the button may be rubbing

> on a rib. We visited 4 different medical facilities

> over that period of time, before finding someone who

> wanted to address the problem. The first 3

> facilities said the pain around the button was

> caused by a variety of things, none being the button

> rubbing on a rub.

>

> To shorten this long story we found a surgeon who

> said a 14 year old cognitive child should be eating.

> He dilated the esophagus 3 times. Karlee's eating

> improved. June 7, 2002 was the last time she

> connected to a feeding pump.

>

> We hope to have the button removed next month as

> this surgeon says it is rubbing on a rib - causing

> the pains she has had over the past 5 years.

>

> There were times we wondered if her eating would

> ever improve enough to get rid of the button. She

> has to eat many small meals in a day but she had

> maintained her weight.

>

> It took 14 years but we have finally gotten rid of

> one more medical issue... never give up hope!

>

> from IL

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

August 28, 2002

Thank you for sharing this accomplishment. Your story

is amazing, and should give hope to many of us.

--- Ludwig wrote:

> My daugther Karlee is 14. She had a TEF repair,

> tube placement,and fundoplication all within the

> first 3 weeks of life. She also had a choanal

> atresia,with that surgical repair stopping any

> desire to suck.

>

> By the time we fought through oral sensitivity

> problems we found that food just didn't go down due

> to very reduced peristalsis and a tight wrap.

>

> Five years ago she developed pain around the button

> site. We suspected that the button may be rubbing

> on a rib. We visited 4 different medical facilities

> over that period of time, before finding someone who

> wanted to address the problem. The first 3

> facilities said the pain around the button was

> caused by a variety of things, none being the button

> rubbing on a rub.

>

> To shorten this long story we found a surgeon who

> said a 14 year old cognitive child should be eating.

> He dilated the esophagus 3 times. Karlee's eating

> improved. June 7, 2002 was the last time she

> connected to a feeding pump.

>

> We hope to have the button removed next month as

> this surgeon says it is rubbing on a rib - causing

> the pains she has had over the past 5 years.

>

> There were times we wondered if her eating would

> ever improve enough to get rid of the button. She

> has to eat many small meals in a day but she had

> maintained her weight.

>

> It took 14 years but we have finally gotten rid of

> one more medical issue... never give up hope!

>

> from IL

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

August 28, 2002

,

This is so wonderful to read...it just helps further my belief that at some

point, to some degree, Kennedy WILL eat orally!

That's FANTASTIC that she is getting her button out so soon. Are you nervous

about it?

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

hope for those with eating difficulties

My daugther Karlee is 14. She had a TEF repair, tube placement,and

fundoplication all within the first 3 weeks of life. She also had a choanal

atresia,with that surgical repair stopping any desire to suck.

By the time we fought through oral sensitivity problems we found that food

just didn't go down due to very reduced peristalsis and a tight wrap.

Five years ago she developed pain around the button site. We suspected that

the button may be rubbing on a rib. We visited 4 different medical facilities

over that period of time, before finding someone who wanted to address the

problem. The first 3 facilities said the pain around the button was caused by a

variety of things, none being the button rubbing on a rub.

To shorten this long story we found a surgeon who said a 14 year old cognitive

child should be eating. He dilated the esophagus 3 times. Karlee's eating

improved. June 7, 2002 was the last time she connected to a feeding pump.

We hope to have the button removed next month as this surgeon says it is

rubbing on a rib - causing the pains she has had over the past 5 years.

There were times we wondered if her eating would ever improve enough to get

rid of the button. She has to eat many small meals in a day but she had

maintained her weight.

It took 14 years but we have finally gotten rid of one more medical issue...

never give up hope!

from IL

August 28, 2002