Re: feeding tubes....Anyone with experience?

[Guest guest]

My husband's neurologist has recommended a feeding tube to be able to get liquids into him. The neuro suggested that by using the tube to get the liquid in and then he could chose to eat what he was able to get to go down. We have had a big hassle (between the two of us) over the past few months of me trying to get him to drink liquid and him just letting it sit on table knowing the trouble that the liquid would cause.

He has much trouble swallowing liquids, but does ok with food. As we watch the film of his swallow study, we can see that the epiglotist (sp) allows foods (heavier items) to pass the wind pipe and move into stomach. The water or liquids do not put enough pressure on the epiglotist (sp), thus the liquid often drips slowly down the windpipe and into lungs. We have many periods of stangling/chocking both on his own saliva and with drinking liquids even with using thicket.

The testing also indicates that the back of his tongue which would normally help the food and liquid to move out of the mouth and down the throat actually is moving in an unusual way which actually forces the liquid to the front of the mouth where it pools. He has to really think " swallow " to make the correct process work. Speech therapy is working to help with that.

We went to our local physcian who thought the stomach tube was a good idea and that it might help a chronic UTI that he has had for months. There is always some infection and blood there, but some times it is off of the chart. This doctor thinks that if we could get more fluid in that we might could help the UTI as well as the problem with stragling/choking on liquid.

Our local physcian sent us to a local surgeon who practically laughed us out of the room. He said that he would never put in a stomach tube for some one who weighs as much as Speedy does. He says that stomach tubes are only for the patients who are wasting away from malnutrition. Speedy is not malnurished. Some of his weight though is from the heavy swelling that you have heard me describe that causes his hands and feet to swell/gigantic. The neuro said one time that they looked as if the were the size of cantelopes. He has gone from a 9and 1/2 D shoe to a 11 and 1/2 EEEE.

Anyway, the surgeon sorta implied that the neuro did not know what he was proposing.

Currently, we are at a wait and see, but I would like to know it there is anyone out there who has a tube primarily for fluids. I am sure that somewhere down the road, we will have to move to foods, if he should live so long, but currently, it would be for fluids and maybe medications.

Marilyn in TN

for Speedy who has been at this since at least 1997 and maybe many years before we got an actual diagnosis.

[Guest guest]

My husband's neurologist has recommended a feeding tube to be able to get liquids into him. The neuro suggested that by using the tube to get the liquid in and then he could chose to eat what he was able to get to go down. We have had a big hassle (between the two of us) over the past few months of me trying to get him to drink liquid and him just letting it sit on table knowing the trouble that the liquid would cause.

He has much trouble swallowing liquids, but does ok with food. As we watch the film of his swallow study, we can see that the epiglotist (sp) allows foods (heavier items) to pass the wind pipe and move into stomach. The water or liquids do not put enough pressure on the epiglotist (sp), thus the liquid often drips slowly down the windpipe and into lungs. We have many periods of stangling/chocking both on his own saliva and with drinking liquids even with using thicket.

The testing also indicates that the back of his tongue which would normally help the food and liquid to move out of the mouth and down the throat actually is moving in an unusual way which actually forces the liquid to the front of the mouth where it pools. He has to really think " swallow " to make the correct process work. Speech therapy is working to help with that.

We went to our local physcian who thought the stomach tube was a good idea and that it might help a chronic UTI that he has had for months. There is always some infection and blood there, but some times it is off of the chart. This doctor thinks that if we could get more fluid in that we might could help the UTI as well as the problem with stragling/choking on liquid.

Our local physcian sent us to a local surgeon who practically laughed us out of the room. He said that he would never put in a stomach tube for some one who weighs as much as Speedy does. He says that stomach tubes are only for the patients who are wasting away from malnutrition. Speedy is not malnurished. Some of his weight though is from the heavy swelling that you have heard me describe that causes his hands and feet to swell/gigantic. The neuro said one time that they looked as if the were the size of cantelopes. He has gone from a 9and 1/2 D shoe to a 11 and 1/2 EEEE.

Anyway, the surgeon sorta implied that the neuro did not know what he was proposing.

Currently, we are at a wait and see, but I would like to know it there is anyone out there who has a tube primarily for fluids. I am sure that somewhere down the road, we will have to move to foods, if he should live so long, but currently, it would be for fluids and maybe medications.

Marilyn in TN

for Speedy who has been at this since at least 1997 and maybe many years before we got an actual diagnosis.

[Guest guest]

My husband's neurologist has recommended a feeding tube to be able to get liquids into him. The neuro suggested that by using the tube to get the liquid in and then he could chose to eat what he was able to get to go down. We have had a big hassle (between the two of us) over the past few months of me trying to get him to drink liquid and him just letting it sit on table knowing the trouble that the liquid would cause.

He has much trouble swallowing liquids, but does ok with food. As we watch the film of his swallow study, we can see that the epiglotist (sp) allows foods (heavier items) to pass the wind pipe and move into stomach. The water or liquids do not put enough pressure on the epiglotist (sp), thus the liquid often drips slowly down the windpipe and into lungs. We have many periods of stangling/chocking both on his own saliva and with drinking liquids even with using thicket.

The testing also indicates that the back of his tongue which would normally help the food and liquid to move out of the mouth and down the throat actually is moving in an unusual way which actually forces the liquid to the front of the mouth where it pools. He has to really think " swallow " to make the correct process work. Speech therapy is working to help with that.

We went to our local physcian who thought the stomach tube was a good idea and that it might help a chronic UTI that he has had for months. There is always some infection and blood there, but some times it is off of the chart. This doctor thinks that if we could get more fluid in that we might could help the UTI as well as the problem with stragling/choking on liquid.

Our local physcian sent us to a local surgeon who practically laughed us out of the room. He said that he would never put in a stomach tube for some one who weighs as much as Speedy does. He says that stomach tubes are only for the patients who are wasting away from malnutrition. Speedy is not malnurished. Some of his weight though is from the heavy swelling that you have heard me describe that causes his hands and feet to swell/gigantic. The neuro said one time that they looked as if the were the size of cantelopes. He has gone from a 9and 1/2 D shoe to a 11 and 1/2 EEEE.

Anyway, the surgeon sorta implied that the neuro did not know what he was proposing.

Currently, we are at a wait and see, but I would like to know it there is anyone out there who has a tube primarily for fluids. I am sure that somewhere down the road, we will have to move to foods, if he should live so long, but currently, it would be for fluids and maybe medications.

Marilyn in TN

for Speedy who has been at this since at least 1997 and maybe many years before we got an actual diagnosis.

[Guest guest]

Marilyn

Smack that surgeon upside the head and find someone who knows what MSA

is. It sounds like he doesn't have a clue why MSA patients need to have

PEG tubes.

I'm sure Bill will give you all the details

Sally

[Guest guest]

Marilyn,

Yes, Charlotte had the PEG primarily for liquids for more than three

years and had only one bout of pneumonia during that time.

Take care, Bill Werre

[Guest guest]

Sally,

If Speedy is very fat, gastro people do not like to put in PEG tubes, so that

may be the problem. However, it does need to be explained to the gastro

doctor by the PCP or neuro as to why they want it. This is a case where the

PCP needs to coordinate the medical care and explain that the primary care

concern is aspiration pneumonia.

Take care, Bill Werre

=====================================================

Sally Lesline wrote:

> Marilyn

> Smack that surgeon upside the head and find someone who knows what MSA

> is. It sounds like he doesn't have a clue why MSA patients need to have

> PEG tubes.

>

> I'm sure Bill will give you all the details

> Sally

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Sally,

If Speedy is very fat, gastro people do not like to put in PEG tubes, so that

may be the problem. However, it does need to be explained to the gastro

doctor by the PCP or neuro as to why they want it. This is a case where the

PCP needs to coordinate the medical care and explain that the primary care

concern is aspiration pneumonia.

Take care, Bill Werre

=====================================================

Sally Lesline wrote:

> Marilyn

> Smack that surgeon upside the head and find someone who knows what MSA

> is. It sounds like he doesn't have a clue why MSA patients need to have

> PEG tubes.

>

> I'm sure Bill will give you all the details

> Sally

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Bill

I assumed that was probably the situation and yes I do agree it's time

for Speedy's doc to step in and lay the ground work. It's unfortunate

that it wasn't done before they had the appointment.

I do think sometimes that doctors do forget they need to explain why

they are sending a patient on to see the specialist. Since we know

Marilyn isn't going to just take that response and let it drop (after

all she has all of us here to rely on) many patients would just walk off

and assume they didn't stand a chance of having the surgery.

I knew someone would know what to tell Marilyn.

Thanks Bill

Sally

[Guest guest]

Bill

I assumed that was probably the situation and yes I do agree it's time

for Speedy's doc to step in and lay the ground work. It's unfortunate

that it wasn't done before they had the appointment.

I do think sometimes that doctors do forget they need to explain why

they are sending a patient on to see the specialist. Since we know

Marilyn isn't going to just take that response and let it drop (after

all she has all of us here to rely on) many patients would just walk off

and assume they didn't stand a chance of having the surgery.

I knew someone would know what to tell Marilyn.

Thanks Bill

Sally