Re: salivary gland - Bradley

[Guest guest]

Bradley,

I am so glad to hear from you regarding this. And congrats on the

decann.!!!!!!!! I am really toying with this procedure. has salivary

glands - sublingual - under his tongue that are oversized and protrude from

out underneath his tongue. we assume they are continually stimulated by his

tongue movement. He aslo has very poor oral motor skills and transitioning

and swallows based on volume. He did pass a swallow study last month (yea!)

but once the robinul has worn off he is flooded and gurgles and tries

desperately to manage it all. He can't stand it. His mouth also hangs open -

almost like a lock jaw - because of what I feel is a direct result of 2 jaw

distractions (which were successful in opening his airway). so if they do

this shaving the jaw bone surgery to get more range of motion in the jaw will

he handle saliva better b/c he can now swallow better do to mouth closure? so

many questions. I see the ent thursday and will fire them off to him. do you

feel the salivary surgery was a key component in decannulation. Did Aubrey

get constant pneumonias prior?

thanks for your input!!

Betsy

[Guest guest]

Hi Betsy. We had the " drool procedure " saliva gland removal done after

Aubrey did so poorly on a FEAS (sp?) study. They felt that it may help her

if we could reduce her secretions. Aubrey would pool her secretions in the

back of her nasal passageways and the back of her mouth. Then, eventually,

they would slide down her airway, or at least that was the theory. They

felt that the reason she was not swallowing effectively was that since

secretions always pooled back there she didn't have the sensation to

swallow. If we could get rid of them maybe she would start swallowing

better. However, all it really seemed to do was stop her drooling out of

her mouth. It did not seem to help at all with secretions in her airway or

with her swallowing. I'm not sure if I had to do it all over again if I

would have it done on Aubrey. Our belief all along was that the trach

itself was causing most of her swallowing problems and secretions, even

though some doctors disagreed with us. And now, after getting the trach

out, she has had virtually no secretions and is already swallowing much

better, so I think we were right. I don't know that other kids would be

like Aubrey because each has different problems, but I do still strongly

believe that the trach definitely can cause the kids to not want to swallow

because of the way it feels and also definitely generates a lot of

secretions.

Good luck with . It is always so difficult to figure out which things

to do and which to not do.

Bradley

Re: salivary gland - Bradley

> Bradley,

> I am so glad to hear from you regarding this. And congrats on the

> decann.!!!!!!!! I am really toying with this procedure. has salivary

> glands - sublingual - under his tongue that are oversized and protrude

from

> out underneath his tongue. we assume they are continually stimulated by

his

> tongue movement. He aslo has very poor oral motor skills and transitioning

> and swallows based on volume. He did pass a swallow study last month

(yea!)

> but once the robinul has worn off he is flooded and gurgles and tries

> desperately to manage it all. He can't stand it. His mouth also hangs

open -

> almost like a lock jaw - because of what I feel is a direct result of 2

jaw

> distractions (which were successful in opening his airway). so if they do

> this shaving the jaw bone surgery to get more range of motion in the jaw

will

> he handle saliva better b/c he can now swallow better do to mouth closure?

so

> many questions. I see the ent thursday and will fire them off to him. do

you

> feel the salivary surgery was a key component in decannulation. Did Aubrey

> get constant pneumonias prior?

> thanks for your input!!

> Betsy

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

Hi Betsy. We had the " drool procedure " saliva gland removal done after

Aubrey did so poorly on a FEAS (sp?) study. They felt that it may help her

if we could reduce her secretions. Aubrey would pool her secretions in the

back of her nasal passageways and the back of her mouth. Then, eventually,

they would slide down her airway, or at least that was the theory. They

felt that the reason she was not swallowing effectively was that since

secretions always pooled back there she didn't have the sensation to

swallow. If we could get rid of them maybe she would start swallowing

better. However, all it really seemed to do was stop her drooling out of

her mouth. It did not seem to help at all with secretions in her airway or

with her swallowing. I'm not sure if I had to do it all over again if I

would have it done on Aubrey. Our belief all along was that the trach

itself was causing most of her swallowing problems and secretions, even

though some doctors disagreed with us. And now, after getting the trach

out, she has had virtually no secretions and is already swallowing much

better, so I think we were right. I don't know that other kids would be

like Aubrey because each has different problems, but I do still strongly

believe that the trach definitely can cause the kids to not want to swallow

because of the way it feels and also definitely generates a lot of

secretions.

Good luck with . It is always so difficult to figure out which things

to do and which to not do.

Bradley

Re: salivary gland - Bradley

> Bradley,

> I am so glad to hear from you regarding this. And congrats on the

> decann.!!!!!!!! I am really toying with this procedure. has salivary

> glands - sublingual - under his tongue that are oversized and protrude

from

> out underneath his tongue. we assume they are continually stimulated by

his

> tongue movement. He aslo has very poor oral motor skills and transitioning

> and swallows based on volume. He did pass a swallow study last month

(yea!)

> but once the robinul has worn off he is flooded and gurgles and tries

> desperately to manage it all. He can't stand it. His mouth also hangs

open -

> almost like a lock jaw - because of what I feel is a direct result of 2

jaw

> distractions (which were successful in opening his airway). so if they do

> this shaving the jaw bone surgery to get more range of motion in the jaw

will

> he handle saliva better b/c he can now swallow better do to mouth closure?

so

> many questions. I see the ent thursday and will fire them off to him. do

you

> feel the salivary surgery was a key component in decannulation. Did Aubrey

> get constant pneumonias prior?

> thanks for your input!!

> Betsy

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

Hi Betsy. We had the " drool procedure " saliva gland removal done after

Aubrey did so poorly on a FEAS (sp?) study. They felt that it may help her

if we could reduce her secretions. Aubrey would pool her secretions in the

back of her nasal passageways and the back of her mouth. Then, eventually,

they would slide down her airway, or at least that was the theory. They

felt that the reason she was not swallowing effectively was that since

secretions always pooled back there she didn't have the sensation to

swallow. If we could get rid of them maybe she would start swallowing

better. However, all it really seemed to do was stop her drooling out of

her mouth. It did not seem to help at all with secretions in her airway or

with her swallowing. I'm not sure if I had to do it all over again if I

would have it done on Aubrey. Our belief all along was that the trach

itself was causing most of her swallowing problems and secretions, even

though some doctors disagreed with us. And now, after getting the trach

out, she has had virtually no secretions and is already swallowing much

better, so I think we were right. I don't know that other kids would be

like Aubrey because each has different problems, but I do still strongly

believe that the trach definitely can cause the kids to not want to swallow

because of the way it feels and also definitely generates a lot of

secretions.

Good luck with . It is always so difficult to figure out which things

to do and which to not do.

Bradley

Re: salivary gland - Bradley

> Bradley,

> I am so glad to hear from you regarding this. And congrats on the

> decann.!!!!!!!! I am really toying with this procedure. has salivary

> glands - sublingual - under his tongue that are oversized and protrude

from

> out underneath his tongue. we assume they are continually stimulated by

his

> tongue movement. He aslo has very poor oral motor skills and transitioning

> and swallows based on volume. He did pass a swallow study last month

(yea!)

> but once the robinul has worn off he is flooded and gurgles and tries

> desperately to manage it all. He can't stand it. His mouth also hangs

open -

> almost like a lock jaw - because of what I feel is a direct result of 2

jaw

> distractions (which were successful in opening his airway). so if they do

> this shaving the jaw bone surgery to get more range of motion in the jaw

will

> he handle saliva better b/c he can now swallow better do to mouth closure?

so

> many questions. I see the ent thursday and will fire them off to him. do

you

> feel the salivary surgery was a key component in decannulation. Did Aubrey

> get constant pneumonias prior?

> thanks for your input!!

> Betsy

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

At 08:03 AM 5/29/02 -0500, Bradley wrote:

> Our belief all along was that the trach

>itself was causing most of her swallowing problems and secretions, even

>though some doctors disagreed with us. And now, after getting the trach

>out, she has had virtually no secretions and is already swallowing much

>better, so I think we were right. I don't know that other kids would be

>like Aubrey because each has different problems, but I do still strongly

>believe that the trach definitely can cause the kids to not want to swallow

>because of the way it feels and also definitely generates a lot of

>secretions.

Bradley,

I agree with you one MILLION percent that the trach itself causes

swallowing problems and can cause extra secretions. And I also agree

strongly that all our kids can have differing issues. On this issue,

Kendra was exactly the same as Aubrey, though. She had the trach from two

weeks of age until 3 years of age and when the trach came out she stopped

having all the secretions and started to develop her swallow for

foods. For Kendra it took a couple of years to develop a safe swallow

after the trach came out, but for one of the years the therapists did not

want to work on it. So, essentially it took about a year.

Kendra never had a problem with drooling kinds of secretions. She had

difficulties with secretions in the throat. And she had problems with

significant infections in her throat until the trach came out.

We also know that the trach caused many of these difficulties. If any of us

put a plastic tube in our throat I'm sure we would have varying degrees of

difficulties as well. I don't know why doctors would disagree with that.

The positive thing is that many of these difficulties can be overcome upon

decannulation.

Mom to , Camille and Kendra

[Guest guest]

At 08:03 AM 5/29/02 -0500, Bradley wrote:

> Our belief all along was that the trach

>itself was causing most of her swallowing problems and secretions, even

>though some doctors disagreed with us. And now, after getting the trach

>out, she has had virtually no secretions and is already swallowing much

>better, so I think we were right. I don't know that other kids would be

>like Aubrey because each has different problems, but I do still strongly

>believe that the trach definitely can cause the kids to not want to swallow

>because of the way it feels and also definitely generates a lot of

>secretions.

Bradley,

I agree with you one MILLION percent that the trach itself causes

swallowing problems and can cause extra secretions. And I also agree

strongly that all our kids can have differing issues. On this issue,

Kendra was exactly the same as Aubrey, though. She had the trach from two

weeks of age until 3 years of age and when the trach came out she stopped

having all the secretions and started to develop her swallow for

foods. For Kendra it took a couple of years to develop a safe swallow

after the trach came out, but for one of the years the therapists did not

want to work on it. So, essentially it took about a year.

Kendra never had a problem with drooling kinds of secretions. She had

difficulties with secretions in the throat. And she had problems with

significant infections in her throat until the trach came out.

We also know that the trach caused many of these difficulties. If any of us

put a plastic tube in our throat I'm sure we would have varying degrees of

difficulties as well. I don't know why doctors would disagree with that.

The positive thing is that many of these difficulties can be overcome upon

decannulation.

Mom to , Camille and Kendra

[Guest guest]

At 08:03 AM 5/29/02 -0500, Bradley wrote:

> Our belief all along was that the trach

>itself was causing most of her swallowing problems and secretions, even

>though some doctors disagreed with us. And now, after getting the trach

>out, she has had virtually no secretions and is already swallowing much

>better, so I think we were right. I don't know that other kids would be

>like Aubrey because each has different problems, but I do still strongly

>believe that the trach definitely can cause the kids to not want to swallow

>because of the way it feels and also definitely generates a lot of

>secretions.

Bradley,

I agree with you one MILLION percent that the trach itself causes

swallowing problems and can cause extra secretions. And I also agree

strongly that all our kids can have differing issues. On this issue,

Kendra was exactly the same as Aubrey, though. She had the trach from two

weeks of age until 3 years of age and when the trach came out she stopped

having all the secretions and started to develop her swallow for

foods. For Kendra it took a couple of years to develop a safe swallow

after the trach came out, but for one of the years the therapists did not

want to work on it. So, essentially it took about a year.

Kendra never had a problem with drooling kinds of secretions. She had

difficulties with secretions in the throat. And she had problems with

significant infections in her throat until the trach came out.

We also know that the trach caused many of these difficulties. If any of us

put a plastic tube in our throat I'm sure we would have varying degrees of

difficulties as well. I don't know why doctors would disagree with that.

The positive thing is that many of these difficulties can be overcome upon

decannulation.

Mom to , Camille and Kendra

[Guest guest]

,

That's great to hear about Kendra and the swallowing improvement after

the trach came out. I would be very happy if Aubrey could follow that

same kind of timeframe. Aubrey also has had so many throat infections.

We are hoping that those infections will decrease now without the trach.

Bradley

Re: salivary gland - Bradley

At 08:03 AM 5/29/02 -0500, Bradley wrote:

> Our belief all along was that the trach

>itself was causing most of her swallowing problems and secretions, even

>though some doctors disagreed with us. And now, after getting the

>trach out, she has had virtually no secretions and is already

>swallowing much better, so I think we were right. I don't know that

>other kids would be like Aubrey because each has different problems,

>but I do still strongly believe that the trach definitely can cause the

>kids to not want to swallow because of the way it feels and also

>definitely generates a lot of secretions.

Bradley,

I agree with you one MILLION percent that the trach itself causes

swallowing problems and can cause extra secretions. And I also agree

strongly that all our kids can have differing issues. On this issue,

Kendra was exactly the same as Aubrey, though. She had the trach from

two

weeks of age until 3 years of age and when the trach came out she

stopped

having all the secretions and started to develop her swallow for

foods. For Kendra it took a couple of years to develop a safe swallow

after the trach came out, but for one of the years the therapists did

not

want to work on it. So, essentially it took about a year.

Kendra never had a problem with drooling kinds of secretions. She had

difficulties with secretions in the throat. And she had problems with

significant infections in her throat until the trach came out.

We also know that the trach caused many of these difficulties. If any of

us

put a plastic tube in our throat I'm sure we would have varying degrees

of

difficulties as well. I don't know why doctors would disagree with that.

The positive thing is that many of these difficulties can be overcome

upon

decannulation.

Mom to , Camille and Kendra

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

6th International CHARGE Syndrome Conference, Cleveland, Ohio, July

25-27, 2003. Information will be available at our website

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

That's great to hear about Kendra and the swallowing improvement after

the trach came out. I would be very happy if Aubrey could follow that

same kind of timeframe. Aubrey also has had so many throat infections.

We are hoping that those infections will decrease now without the trach.

Bradley

Re: salivary gland - Bradley

At 08:03 AM 5/29/02 -0500, Bradley wrote:

> Our belief all along was that the trach

>itself was causing most of her swallowing problems and secretions, even

>though some doctors disagreed with us. And now, after getting the

>trach out, she has had virtually no secretions and is already

>swallowing much better, so I think we were right. I don't know that

>other kids would be like Aubrey because each has different problems,

>but I do still strongly believe that the trach definitely can cause the

>kids to not want to swallow because of the way it feels and also

>definitely generates a lot of secretions.

Bradley,

I agree with you one MILLION percent that the trach itself causes

swallowing problems and can cause extra secretions. And I also agree

strongly that all our kids can have differing issues. On this issue,

Kendra was exactly the same as Aubrey, though. She had the trach from

two

weeks of age until 3 years of age and when the trach came out she

stopped

having all the secretions and started to develop her swallow for

foods. For Kendra it took a couple of years to develop a safe swallow

after the trach came out, but for one of the years the therapists did

not

want to work on it. So, essentially it took about a year.

Kendra never had a problem with drooling kinds of secretions. She had

difficulties with secretions in the throat. And she had problems with

significant infections in her throat until the trach came out.

We also know that the trach caused many of these difficulties. If any of

us

put a plastic tube in our throat I'm sure we would have varying degrees

of

difficulties as well. I don't know why doctors would disagree with that.

The positive thing is that many of these difficulties can be overcome

upon

decannulation.

Mom to , Camille and Kendra

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

6th International CHARGE Syndrome Conference, Cleveland, Ohio, July

25-27, 2003. Information will be available at our website

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

That's great to hear about Kendra and the swallowing improvement after

the trach came out. I would be very happy if Aubrey could follow that

same kind of timeframe. Aubrey also has had so many throat infections.

We are hoping that those infections will decrease now without the trach.

Bradley

Re: salivary gland - Bradley

At 08:03 AM 5/29/02 -0500, Bradley wrote:

> Our belief all along was that the trach

>itself was causing most of her swallowing problems and secretions, even

>though some doctors disagreed with us. And now, after getting the

>trach out, she has had virtually no secretions and is already

>swallowing much better, so I think we were right. I don't know that

>other kids would be like Aubrey because each has different problems,

>but I do still strongly believe that the trach definitely can cause the

>kids to not want to swallow because of the way it feels and also

>definitely generates a lot of secretions.

Bradley,

I agree with you one MILLION percent that the trach itself causes

swallowing problems and can cause extra secretions. And I also agree

strongly that all our kids can have differing issues. On this issue,

Kendra was exactly the same as Aubrey, though. She had the trach from

two

weeks of age until 3 years of age and when the trach came out she

stopped

having all the secretions and started to develop her swallow for

foods. For Kendra it took a couple of years to develop a safe swallow

after the trach came out, but for one of the years the therapists did

not

want to work on it. So, essentially it took about a year.

Kendra never had a problem with drooling kinds of secretions. She had

difficulties with secretions in the throat. And she had problems with

significant infections in her throat until the trach came out.

We also know that the trach caused many of these difficulties. If any of

us

put a plastic tube in our throat I'm sure we would have varying degrees

of

difficulties as well. I don't know why doctors would disagree with that.

The positive thing is that many of these difficulties can be overcome

upon

decannulation.

Mom to , Camille and Kendra

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

6th International CHARGE Syndrome Conference, Cleveland, Ohio, July

25-27, 2003. Information will be available at our website

www.chargesyndrome.org or by calling 1-.