Feeding Tube Advice

[Guest guest]

Hi there,

I hope everyone is hanging in there. I know some of you are off to Ann

Arbor, but I'm hoping there might be some others still around that

could give me some advice.

My Dad has been having difficulty swallowing lately, so much so that it

is affecting his eating and drinking habits. He's still able to eat and

drink, but he is consuming less. Dad is only in the beginning stages of

LBD and is fairly active- he goes to the gym 3 x week and has even

rebuilt some biscep muscle, etc. For now, we give Dad Ensures, fruit

smoothies, soft food (mashed potatoes, veggie soup, etc). Sometimes he

even has a few pieces of chicken/meat and he loves shrimp.

Well, his new GP ordered a swallow test to be done and unfortunately,

Dad couldn't do it. The radiology doctor was amazed to see he had no

gag reflexes and was shocked that he couldn't even consume any of the

test liquid at all. The doctor thought that possibly the swallowing

problem was a result from his brain tumor rather than the LBD.

So, now his GP wants him to see a gastroentrologist to have a permanent

feeding tube placed inside of him. My entire family thinks this is

absolutely ridiculous and will not agree to do so. We have agreed to a

consult with said doctor but Dad is no way impaired enough to consider

such a drastic measure especially since Dad can still eat and drink,

he's just having difficulty. Perhaps it's because he's over-medicated

and is experiencing effects from that (we're slowly weening him off of

some of his meds); or the Parkinsonism and him losing his muscle

control with his tongue; or has he just forgotten how to swallow or

could it be as simple as a dental issue? Perhaps there is the

possibility there is something else going on with his brain?

I just think it's such a hasty decision to insert a feeding tube

instead of looking in to the source of the problem and exhausting all

other options first. How about meeting with a speech pathologist to

help him with swallowing techniques, trying a special diet,

rescheduling the swallowing test again, for example.

I'd appreciate any feedback or if anyone has been in a similar

position, what your experience was.

From the research I've done, feeding tubes in dementia patients are not

a good idea and it is usually reserved for the final stages. Even

feeding tubes don't stop malnutrition.

Thanks for reading,

Holly

[Guest guest]

Holly,

What are your father's advance directives with regard to a feeding

tube? Hopefully your family had this conversation as soon as he was

diagnosed. If he said he didn't want a feeding tube, then report

that to the MD and keep doing as you're doing.

If your father said he'd want a feeding tube, then I'd suggest

getting the swallow study (a good one is the modified barium swallow

study) in several weeks at a different facility, orchestrated by a

speech/language pathologist with experience in dysphagia and

neurodegenerative disorders. Try to plan the MBSS in the morning, or

whenever your dad is often rested. And try to deal with med changes

by then. My guess is that if you have an experienced SLP doing the

test that you'll get a different result.

Good luck,

Robin

>

> Hi there,

> I hope everyone is hanging in there. I know some of you are off to

Ann

> Arbor, but I'm hoping there might be some others still around that

> could give me some advice.

>

> My Dad has been having difficulty swallowing lately, so much so

that it

> is affecting his eating and drinking habits. He's still able to eat

and

> drink, but he is consuming less. Dad is only in the beginning

stages of

> LBD and is fairly active- he goes to the gym 3 x week and has even

> rebuilt some biscep muscle, etc. For now, we give Dad Ensures,

fruit

> smoothies, soft food (mashed potatoes, veggie soup, etc). Sometimes

he

> even has a few pieces of chicken/meat and he loves shrimp.

>

> Well, his new GP ordered a swallow test to be done and

unfortunately,

> Dad couldn't do it. The radiology doctor was amazed to see he had

no

> gag reflexes and was shocked that he couldn't even consume any of

the

> test liquid at all. The doctor thought that possibly the swallowing

> problem was a result from his brain tumor rather than the LBD.

>

> So, now his GP wants him to see a gastroentrologist to have a

permanent

> feeding tube placed inside of him. My entire family thinks this is

> absolutely ridiculous and will not agree to do so. We have agreed

to a

> consult with said doctor but Dad is no way impaired enough to

consider

> such a drastic measure especially since Dad can still eat and

drink,

> he's just having difficulty. Perhaps it's because he's over-

medicated

> and is experiencing effects from that (we're slowly weening him off

of

> some of his meds); or the Parkinsonism and him losing his muscle

> control with his tongue; or has he just forgotten how to swallow or

> could it be as simple as a dental issue? Perhaps there is the

> possibility there is something else going on with his brain?

>

> I just think it's such a hasty decision to insert a feeding tube

> instead of looking in to the source of the problem and exhausting

all

> other options first. How about meeting with a speech pathologist to

> help him with swallowing techniques, trying a special diet,

> rescheduling the swallowing test again, for example.

>

> I'd appreciate any feedback or if anyone has been in a similar

> position, what your experience was.

>

> From the research I've done, feeding tubes in dementia patients are

not

> a good idea and it is usually reserved for the final stages. Even

> feeding tubes don't stop malnutrition.

>

> Thanks for reading,

> Holly

>