Re: To Michele W : G Tube with Fundo question

[Guest guest]

It was a battle for us too. It was the first time we questioned and

challenged the dr's recommendations. They did Gtube and fundo together as a

matter of course-- without really considering the need for both for the

individual child. I can see the benefit of doing both under one anesthesia

-- but that only applies if both are really necessary. If Carmen does not

appear to have reflux, then why would she need a fundo? And if she does

have reflux, a fundo still isn't necessary unless she is at risk of

aspiration.

For Aubrie, there was no aspiration. The reflux was a problem nutritionally

and developmentally, but it wasn't life-threatening. We felt it was worth

the wait to see if it would resolve on it's own before making a permanent

anatomical change for what may be a short-term problem. In our case, she

did outgrow the reflux and never needed the fundo. If you choose not to do

the fundo now for Carmen, that doesn't mean you can't do it later if it

becomes apparent that it is necessary. If Carmen does have reflux and it

doesn't resolve, even without aspiration, you wouldn't want that continued

potential damage to her esophagus etc. But you have time to see if that is

happening. I'd ask the dr's if there is real evidence of medical need for

a fundo. In our case, we did not choose to be proactive on this one.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

It was a battle for us too. It was the first time we questioned and

challenged the dr's recommendations. They did Gtube and fundo together as a

matter of course-- without really considering the need for both for the

individual child. I can see the benefit of doing both under one anesthesia

-- but that only applies if both are really necessary. If Carmen does not

appear to have reflux, then why would she need a fundo? And if she does

have reflux, a fundo still isn't necessary unless she is at risk of

aspiration.

For Aubrie, there was no aspiration. The reflux was a problem nutritionally

and developmentally, but it wasn't life-threatening. We felt it was worth

the wait to see if it would resolve on it's own before making a permanent

anatomical change for what may be a short-term problem. In our case, she

did outgrow the reflux and never needed the fundo. If you choose not to do

the fundo now for Carmen, that doesn't mean you can't do it later if it

becomes apparent that it is necessary. If Carmen does have reflux and it

doesn't resolve, even without aspiration, you wouldn't want that continued

potential damage to her esophagus etc. But you have time to see if that is

happening. I'd ask the dr's if there is real evidence of medical need for

a fundo. In our case, we did not choose to be proactive on this one.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

It was a battle for us too. It was the first time we questioned and

challenged the dr's recommendations. They did Gtube and fundo together as a

matter of course-- without really considering the need for both for the

individual child. I can see the benefit of doing both under one anesthesia

-- but that only applies if both are really necessary. If Carmen does not

appear to have reflux, then why would she need a fundo? And if she does

have reflux, a fundo still isn't necessary unless she is at risk of

aspiration.

For Aubrie, there was no aspiration. The reflux was a problem nutritionally

and developmentally, but it wasn't life-threatening. We felt it was worth

the wait to see if it would resolve on it's own before making a permanent

anatomical change for what may be a short-term problem. In our case, she

did outgrow the reflux and never needed the fundo. If you choose not to do

the fundo now for Carmen, that doesn't mean you can't do it later if it

becomes apparent that it is necessary. If Carmen does have reflux and it

doesn't resolve, even without aspiration, you wouldn't want that continued

potential damage to her esophagus etc. But you have time to see if that is

happening. I'd ask the dr's if there is real evidence of medical need for

a fundo. In our case, we did not choose to be proactive on this one.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Michele, It sounds like Aubrie's swallowing difficulties really

resolved early on--which is so great. Carmen has always eaten by

mouth and is 20 months. She is pretty healthy--and is on prilosec and

zantac for reflux. I believe she aspirates thin liquids on the way

down--not due to reflux--so she is on pudding textures only. I do

worry about hydration for her and so wouldn't mind having a g-tube for

this alone, but feel it's all or nothing with these docs. Did Aubrie

ever have a PH probe done to see how bad her reflux was? And, when

did she outgrow the reflux? Thanks so much, B

>

> It was a battle for us too. It was the first time we questioned and

> challenged the dr's recommendations. They did Gtube and fundo

together as a

> matter of course-- without really considering the need for both for the

> individual child. I can see the benefit of doing both under one

anesthesia

> -- but that only applies if both are really necessary. If Carmen

does not

> appear to have reflux, then why would she need a fundo? And if she does

> have reflux, a fundo still isn't necessary unless she is at risk of

> aspiration.

>

> For Aubrie, there was no aspiration. The reflux was a problem

nutritionally

> and developmentally, but it wasn't life-threatening. We felt it was

worth

> the wait to see if it would resolve on it's own before making a

permanent

> anatomical change for what may be a short-term problem. In our

case, she

> did outgrow the reflux and never needed the fundo. If you choose

not to do

> the fundo now for Carmen, that doesn't mean you can't do it later if it

> becomes apparent that it is necessary. If Carmen does have reflux

and it

> doesn't resolve, even without aspiration, you wouldn't want that

continued

> potential damage to her esophagus etc. But you have time to see if

that is

> happening. I'd ask the dr's if there is real evidence of medical

need for

> a fundo. In our case, we did not choose to be proactive on this one.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

Michele, It sounds like Aubrie's swallowing difficulties really

resolved early on--which is so great. Carmen has always eaten by

mouth and is 20 months. She is pretty healthy--and is on prilosec and

zantac for reflux. I believe she aspirates thin liquids on the way

down--not due to reflux--so she is on pudding textures only. I do

worry about hydration for her and so wouldn't mind having a g-tube for

this alone, but feel it's all or nothing with these docs. Did Aubrie

ever have a PH probe done to see how bad her reflux was? And, when

did she outgrow the reflux? Thanks so much, B

>

> It was a battle for us too. It was the first time we questioned and

> challenged the dr's recommendations. They did Gtube and fundo

together as a

> matter of course-- without really considering the need for both for the

> individual child. I can see the benefit of doing both under one

anesthesia

> -- but that only applies if both are really necessary. If Carmen

does not

> appear to have reflux, then why would she need a fundo? And if she does

> have reflux, a fundo still isn't necessary unless she is at risk of

> aspiration.

>

> For Aubrie, there was no aspiration. The reflux was a problem

nutritionally

> and developmentally, but it wasn't life-threatening. We felt it was

worth

> the wait to see if it would resolve on it's own before making a

permanent

> anatomical change for what may be a short-term problem. In our

case, she

> did outgrow the reflux and never needed the fundo. If you choose

not to do

> the fundo now for Carmen, that doesn't mean you can't do it later if it

> becomes apparent that it is necessary. If Carmen does have reflux

and it

> doesn't resolve, even without aspiration, you wouldn't want that

continued

> potential damage to her esophagus etc. But you have time to see if

that is

> happening. I'd ask the dr's if there is real evidence of medical

need for

> a fundo. In our case, we did not choose to be proactive on this one.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

Aubrie did not have a ph probe. We used both meds you are using. If I

recall, Prilosec was the one that changed her dramatically for the better.

And Nutramigen formula made a world of difference also. Her reflux had to

have been greatly improved by age 1 - 1.5 yrs or she wouldn't have been able

to eat and gain well enough to remove the tube.

Has Carmen had a swallow study that shows she's aspirating thin liquids?

Aubrie's first swallow study showed that she was " at risk " due to

uncoordinated slow swallow, but didn't show actual aspiration. She never

had a pneumonia either. The Gtube is great for getting in nutrition and

meds -- and would be wonderful for liquids for Carmen. But you can ask them

why it's given as a package deal.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: To Michele W : G Tube with Fundo question

Michele, It sounds like Aubrie's swallowing difficulties really

resolved early on--which is so great. Carmen has always eaten by

mouth and is 20 months. She is pretty healthy--and is on prilosec and

zantac for reflux. I believe she aspirates thin liquids on the way

down--not due to reflux--so she is on pudding textures only. I do

worry about hydration for her and so wouldn't mind having a g-tube for

this alone, but feel it's all or nothing with these docs. Did Aubrie

ever have a PH probe done to see how bad her reflux was? And, when

did she outgrow the reflux? Thanks so much, B

>

> It was a battle for us too. It was the first time we questioned and

> challenged the dr's recommendations. They did Gtube and fundo

together as a

> matter of course-- without really considering the need for both for the

> individual child. I can see the benefit of doing both under one

anesthesia

> -- but that only applies if both are really necessary. If Carmen

does not

> appear to have reflux, then why would she need a fundo? And if she does

> have reflux, a fundo still isn't necessary unless she is at risk of

> aspiration.

>

> For Aubrie, there was no aspiration. The reflux was a problem

nutritionally

> and developmentally, but it wasn't life-threatening. We felt it was

worth

> the wait to see if it would resolve on it's own before making a

permanent

> anatomical change for what may be a short-term problem. In our

case, she

> did outgrow the reflux and never needed the fundo. If you choose

not to do

> the fundo now for Carmen, that doesn't mean you can't do it later if it

> becomes apparent that it is necessary. If Carmen does have reflux

and it

> doesn't resolve, even without aspiration, you wouldn't want that

continued

> potential damage to her esophagus etc. But you have time to see if

that is

> happening. I'd ask the dr's if there is real evidence of medical

need for

> a fundo. In our case, we did not choose to be proactive on this one.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Aubrie did not have a ph probe. We used both meds you are using. If I

recall, Prilosec was the one that changed her dramatically for the better.

And Nutramigen formula made a world of difference also. Her reflux had to

have been greatly improved by age 1 - 1.5 yrs or she wouldn't have been able

to eat and gain well enough to remove the tube.

Has Carmen had a swallow study that shows she's aspirating thin liquids?

Aubrie's first swallow study showed that she was " at risk " due to

uncoordinated slow swallow, but didn't show actual aspiration. She never

had a pneumonia either. The Gtube is great for getting in nutrition and

meds -- and would be wonderful for liquids for Carmen. But you can ask them

why it's given as a package deal.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: To Michele W : G Tube with Fundo question

Michele, It sounds like Aubrie's swallowing difficulties really

resolved early on--which is so great. Carmen has always eaten by

mouth and is 20 months. She is pretty healthy--and is on prilosec and

zantac for reflux. I believe she aspirates thin liquids on the way

down--not due to reflux--so she is on pudding textures only. I do

worry about hydration for her and so wouldn't mind having a g-tube for

this alone, but feel it's all or nothing with these docs. Did Aubrie

ever have a PH probe done to see how bad her reflux was? And, when

did she outgrow the reflux? Thanks so much, B

>

> It was a battle for us too. It was the first time we questioned and

> challenged the dr's recommendations. They did Gtube and fundo

together as a

> matter of course-- without really considering the need for both for the

> individual child. I can see the benefit of doing both under one

anesthesia

> -- but that only applies if both are really necessary. If Carmen

does not

> appear to have reflux, then why would she need a fundo? And if she does

> have reflux, a fundo still isn't necessary unless she is at risk of

> aspiration.

>

> For Aubrie, there was no aspiration. The reflux was a problem

nutritionally

> and developmentally, but it wasn't life-threatening. We felt it was

worth

> the wait to see if it would resolve on it's own before making a

permanent

> anatomical change for what may be a short-term problem. In our

case, she

> did outgrow the reflux and never needed the fundo. If you choose

not to do

> the fundo now for Carmen, that doesn't mean you can't do it later if it

> becomes apparent that it is necessary. If Carmen does have reflux

and it

> doesn't resolve, even without aspiration, you wouldn't want that

continued

> potential damage to her esophagus etc. But you have time to see if

that is

> happening. I'd ask the dr's if there is real evidence of medical

need for

> a fundo. In our case, we did not choose to be proactive on this one.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Aubrie did not have a ph probe. We used both meds you are using. If I

recall, Prilosec was the one that changed her dramatically for the better.

And Nutramigen formula made a world of difference also. Her reflux had to

have been greatly improved by age 1 - 1.5 yrs or she wouldn't have been able

to eat and gain well enough to remove the tube.

Has Carmen had a swallow study that shows she's aspirating thin liquids?

Aubrie's first swallow study showed that she was " at risk " due to

uncoordinated slow swallow, but didn't show actual aspiration. She never

had a pneumonia either. The Gtube is great for getting in nutrition and

meds -- and would be wonderful for liquids for Carmen. But you can ask them

why it's given as a package deal.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: To Michele W : G Tube with Fundo question

Michele, It sounds like Aubrie's swallowing difficulties really

resolved early on--which is so great. Carmen has always eaten by

mouth and is 20 months. She is pretty healthy--and is on prilosec and

zantac for reflux. I believe she aspirates thin liquids on the way

down--not due to reflux--so she is on pudding textures only. I do

worry about hydration for her and so wouldn't mind having a g-tube for

this alone, but feel it's all or nothing with these docs. Did Aubrie

ever have a PH probe done to see how bad her reflux was? And, when

did she outgrow the reflux? Thanks so much, B

>

> It was a battle for us too. It was the first time we questioned and

> challenged the dr's recommendations. They did Gtube and fundo

together as a

> matter of course-- without really considering the need for both for the

> individual child. I can see the benefit of doing both under one

anesthesia

> -- but that only applies if both are really necessary. If Carmen

does not

> appear to have reflux, then why would she need a fundo? And if she does

> have reflux, a fundo still isn't necessary unless she is at risk of

> aspiration.

>

> For Aubrie, there was no aspiration. The reflux was a problem

nutritionally

> and developmentally, but it wasn't life-threatening. We felt it was

worth

> the wait to see if it would resolve on it's own before making a

permanent

> anatomical change for what may be a short-term problem. In our

case, she

> did outgrow the reflux and never needed the fundo. If you choose

not to do

> the fundo now for Carmen, that doesn't mean you can't do it later if it

> becomes apparent that it is necessary. If Carmen does have reflux

and it

> doesn't resolve, even without aspiration, you wouldn't want that

continued

> potential damage to her esophagus etc. But you have time to see if

that is

> happening. I'd ask the dr's if there is real evidence of medical

need for

> a fundo. In our case, we did not choose to be proactive on this one.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Michele,

I feel like you are a encyclopedia for CHARGE. Thanks for letting me

peer into your knowledge base! I'm sorry, but this is a bit of a long

response.

Carmen did have a swallow study at about 4 months old which showed a

trace of aspiration of thin liquids. She is 20 months now--so it's

been a while. She has never had a formal diagnosis of aspiration

pnemonia but has had 2 hosptializations for respiratory issues (about

6 months apart) and one had a diagnosis of tracheitis. This was a

month after her first choanal atresia surgery and I believe may have

been caused by the blood and other yucky stuff from the surgery going

into her trachea. She just had choanal atresia surgery round #2 and

I've suctioned a lot of blood from her trach again, so I'm a little

worried that she will get sick again from this. I don't believe she's

ever gotten sick from aspiration--but is on agressive steriod

inhalation to keep her lungs strong.

There is a possibility that Carmen wil get her trach out this summer.

I know that aspiration can be due to a trach because of the force of

the pressure in the direction of the trach when she is swallowing. I

was hoping to hold off on the g-tube until her trach came out to see

if this improved swallowing coordination. She is gaining about a 1/4

pound per month and is very active (just took her first 3 steps by

herself this weekend!). I am very cautious about what she eats, but

am able to get about 700 to 800 cals in per day with vitamin and

calcium supplements to ensure nutrition. She has never been

dehydrated and has plenty of wet diapers with her current regimen.

So, I feel like we are on this fine line of needing it/not needing it.

I don't want to under react, but certainly don't want to over react

either. No one is telling me this is what has to happen, so I feel

it's in my court. I know if she gets sick again from her surgery, it

will be recommended that she get the g-tube/fundo. I think I will

okay the g-tube and hold off on the fundo and fight the battle if I

need to. Thanks for listening and for providing your thoughtful

response, even when you have enough of your plate. You are a gem. I

wish I could give as much as you do.

B.

> >

> > It was a battle for us too. It was the first time we questioned and

> > challenged the dr's recommendations. They did Gtube and fundo

> together as a

> > matter of course-- without really considering the need for both

for the

> > individual child. I can see the benefit of doing both under one

> anesthesia

> > -- but that only applies if both are really necessary. If Carmen

> does not

> > appear to have reflux, then why would she need a fundo? And if

she does

> > have reflux, a fundo still isn't necessary unless she is at risk of

> > aspiration.

> >

> > For Aubrie, there was no aspiration. The reflux was a problem

> nutritionally

> > and developmentally, but it wasn't life-threatening. We felt it was

> worth

> > the wait to see if it would resolve on it's own before making a

> permanent

> > anatomical change for what may be a short-term problem. In our

> case, she

> > did outgrow the reflux and never needed the fundo. If you choose

> not to do

> > the fundo now for Carmen, that doesn't mean you can't do it later

if it

> > becomes apparent that it is necessary. If Carmen does have reflux

> and it

> > doesn't resolve, even without aspiration, you wouldn't want that

> continued

> > potential damage to her esophagus etc. But you have time to see if

> that is

> > happening. I'd ask the dr's if there is real evidence of medical

> need for

> > a fundo. In our case, we did not choose to be proactive on this one.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute

membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

Michele,

I feel like you are a encyclopedia for CHARGE. Thanks for letting me

peer into your knowledge base! I'm sorry, but this is a bit of a long

response.

Carmen did have a swallow study at about 4 months old which showed a

trace of aspiration of thin liquids. She is 20 months now--so it's

been a while. She has never had a formal diagnosis of aspiration

pnemonia but has had 2 hosptializations for respiratory issues (about

6 months apart) and one had a diagnosis of tracheitis. This was a

month after her first choanal atresia surgery and I believe may have

been caused by the blood and other yucky stuff from the surgery going

into her trachea. She just had choanal atresia surgery round #2 and

I've suctioned a lot of blood from her trach again, so I'm a little

worried that she will get sick again from this. I don't believe she's

ever gotten sick from aspiration--but is on agressive steriod

inhalation to keep her lungs strong.

There is a possibility that Carmen wil get her trach out this summer.

I know that aspiration can be due to a trach because of the force of

the pressure in the direction of the trach when she is swallowing. I

was hoping to hold off on the g-tube until her trach came out to see

if this improved swallowing coordination. She is gaining about a 1/4

pound per month and is very active (just took her first 3 steps by

herself this weekend!). I am very cautious about what she eats, but

am able to get about 700 to 800 cals in per day with vitamin and

calcium supplements to ensure nutrition. She has never been

dehydrated and has plenty of wet diapers with her current regimen.

So, I feel like we are on this fine line of needing it/not needing it.

I don't want to under react, but certainly don't want to over react

either. No one is telling me this is what has to happen, so I feel

it's in my court. I know if she gets sick again from her surgery, it

will be recommended that she get the g-tube/fundo. I think I will

okay the g-tube and hold off on the fundo and fight the battle if I

need to. Thanks for listening and for providing your thoughtful

response, even when you have enough of your plate. You are a gem. I

wish I could give as much as you do.

B.

> >

> > It was a battle for us too. It was the first time we questioned and

> > challenged the dr's recommendations. They did Gtube and fundo

> together as a

> > matter of course-- without really considering the need for both

for the

> > individual child. I can see the benefit of doing both under one

> anesthesia

> > -- but that only applies if both are really necessary. If Carmen

> does not

> > appear to have reflux, then why would she need a fundo? And if

she does

> > have reflux, a fundo still isn't necessary unless she is at risk of

> > aspiration.

> >

> > For Aubrie, there was no aspiration. The reflux was a problem

> nutritionally

> > and developmentally, but it wasn't life-threatening. We felt it was

> worth

> > the wait to see if it would resolve on it's own before making a

> permanent

> > anatomical change for what may be a short-term problem. In our

> case, she

> > did outgrow the reflux and never needed the fundo. If you choose

> not to do

> > the fundo now for Carmen, that doesn't mean you can't do it later

if it

> > becomes apparent that it is necessary. If Carmen does have reflux

> and it

> > doesn't resolve, even without aspiration, you wouldn't want that

> continued

> > potential damage to her esophagus etc. But you have time to see if

> that is

> > happening. I'd ask the dr's if there is real evidence of medical

> need for

> > a fundo. In our case, we did not choose to be proactive on this one.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute

membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

We are all different volumes of the total CHARGE encyclopedia! And we all

give when we can and take when we need to. It's all a cycle.

I'm glad our story helped you gather your own thoughts on Carmen. Remember,

Aubrie didn't have a trach or any respiratory issues so that was in her

favor. I certainly don't see how your caution to jump into a fundo will

hurt her. If it was medical necessity, that would be apparent and the drs

would let you know.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

,

Dylan has the fundo so I can't answer that part but I can reassure you that

physicians are advisors not decision makers unless it is a life or death

situation in my view. Carmen is your child; you get information from lots

of resources and advisors, then you make the decision based on what you feel

is the best plan for your daughter. The advisors give info from their

viewpoint and their experience, but you are the only one who is able to see

Carmen as a whole and must think how all these opinions apply to her. And

truth be known, none of us knows a for sure right answer, we simply make the

best decisions we can based on the info (and our intuition) at the time then

go forward with it.

Kim

> Michele,

>

> I know that Aubrie had a g-tube and you were able to do that without a

> fundoplication and treat reflux with meds. I have a feeling that

> Carmen will be getting a g-tube at some point--but every doctor that

> writes a report, etc. always indicates that if things start a downward

> turn, they will recommend both a g-tube and a fundo. I really don't

> want Carmen to have the fundoplication. I can handle the g-tube for

> her but the fundo seems so complicated, and perhaps unnecessary. She

> hasn't even been tested for reflux yet. I'm afraid this is going to be

> a huge battle between me and her surgeon. Any suggestions?

>

> B, mom to Zach 4.5 yrs and Carmen 20 months (charge)

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

,

Dylan has the fundo so I can't answer that part but I can reassure you that

physicians are advisors not decision makers unless it is a life or death

situation in my view. Carmen is your child; you get information from lots

of resources and advisors, then you make the decision based on what you feel

is the best plan for your daughter. The advisors give info from their

viewpoint and their experience, but you are the only one who is able to see

Carmen as a whole and must think how all these opinions apply to her. And

truth be known, none of us knows a for sure right answer, we simply make the

best decisions we can based on the info (and our intuition) at the time then

go forward with it.

Kim

> Michele,

>

> I know that Aubrie had a g-tube and you were able to do that without a

> fundoplication and treat reflux with meds. I have a feeling that

> Carmen will be getting a g-tube at some point--but every doctor that

> writes a report, etc. always indicates that if things start a downward

> turn, they will recommend both a g-tube and a fundo. I really don't

> want Carmen to have the fundoplication. I can handle the g-tube for

> her but the fundo seems so complicated, and perhaps unnecessary. She

> hasn't even been tested for reflux yet. I'm afraid this is going to be

> a huge battle between me and her surgeon. Any suggestions?

>

> B, mom to Zach 4.5 yrs and Carmen 20 months (charge)

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

,

Dylan has the fundo so I can't answer that part but I can reassure you that

physicians are advisors not decision makers unless it is a life or death

situation in my view. Carmen is your child; you get information from lots

of resources and advisors, then you make the decision based on what you feel

is the best plan for your daughter. The advisors give info from their

viewpoint and their experience, but you are the only one who is able to see

Carmen as a whole and must think how all these opinions apply to her. And

truth be known, none of us knows a for sure right answer, we simply make the

best decisions we can based on the info (and our intuition) at the time then

go forward with it.

Kim

> Michele,

>

> I know that Aubrie had a g-tube and you were able to do that without a

> fundoplication and treat reflux with meds. I have a feeling that

> Carmen will be getting a g-tube at some point--but every doctor that

> writes a report, etc. always indicates that if things start a downward

> turn, they will recommend both a g-tube and a fundo. I really don't

> want Carmen to have the fundoplication. I can handle the g-tube for

> her but the fundo seems so complicated, and perhaps unnecessary. She

> hasn't even been tested for reflux yet. I'm afraid this is going to be

> a huge battle between me and her surgeon. Any suggestions?

>

> B, mom to Zach 4.5 yrs and Carmen 20 months (charge)

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

- if you have a Ph probe done - make sure you are able to stay the

entire time - I cannot tell you how many tests are blown, because a nurse in

in starting an emergency IV in one room, so the apple juice is not given at

the right time and so on. The test is just very persnickety to get valid

info and not all nurses are experienced in administering them. Of course I

have not worked in a children's hospital for eons, so perhaps things have

improved. Kim

> Michele, It sounds like Aubrie's swallowing difficulties really

> resolved early on--which is so great. Carmen has always eaten by

> mouth and is 20 months. She is pretty healthy--and is on prilosec and

> zantac for reflux. I believe she aspirates thin liquids on the way

> down--not due to reflux--so she is on pudding textures only. I do

> worry about hydration for her and so wouldn't mind having a g-tube for

> this alone, but feel it's all or nothing with these docs. Did Aubrie

> ever have a PH probe done to see how bad her reflux was? And, when

> did she outgrow the reflux? Thanks so much, B

>

>

>>

>> It was a battle for us too. It was the first time we questioned and

>> challenged the dr's recommendations. They did Gtube and fundo

> together as a

>> matter of course-- without really considering the need for both for the

>> individual child. I can see the benefit of doing both under one

> anesthesia

>> -- but that only applies if both are really necessary. If Carmen

> does not

>> appear to have reflux, then why would she need a fundo? And if she does

>> have reflux, a fundo still isn't necessary unless she is at risk of

>> aspiration.

>>

>> For Aubrie, there was no aspiration. The reflux was a problem

> nutritionally

>> and developmentally, but it wasn't life-threatening. We felt it was

> worth

>> the wait to see if it would resolve on it's own before making a

> permanent

>> anatomical change for what may be a short-term problem. In our

> case, she

>> did outgrow the reflux and never needed the fundo. If you choose

> not to do

>> the fundo now for Carmen, that doesn't mean you can't do it later if it

>> becomes apparent that it is necessary. If Carmen does have reflux

> and it

>> doesn't resolve, even without aspiration, you wouldn't want that

> continued

>> potential damage to her esophagus etc. But you have time to see if

> that is

>> happening. I'd ask the dr's if there is real evidence of medical

> need for

>> a fundo. In our case, we did not choose to be proactive on this one.

>>

>> Michele W

>> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

I have a difficult time not giving my opinion on this.....sorry.....

It seems that surgeons/doctors like to do the fundo automatically with the

g-tube - whether it is necessary or not. If had had a fundo with her

g-tube life would have been awful! She has cyclical vomiting and migraines and

I can only imagine how awful she would feel if her body would not let her vomit

but her brain is telling her she needs to. Another child I know got the fundo

automatically and is trying desperately to find a surgeon to reverse it - and it

can't be reversed because when they did the fundo they cut a major muscle that

holds the stomach in place. In my mom opinion the fundo is only needed when

there is severe reflux and aspiration - or other issues that warrant it - not

just because the child needs a g-tube.

Lori Myers

Spouse - Trent, Children - (8), (5, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button (completed 8-week inpatient feeding

program and ate for 1 week - now back to 100% tube fed!), partial hearing loss,

walking as of 12/22/04!, and Emma (3)

Dallas, Texas

Re: To Michele W : G Tube with Fundo question

,

Dylan has the fundo so I can't answer that part but I can reassure you that

physicians are advisors not decision makers unless it is a life or death

situation in my view. Carmen is your child; you get information from lots

of resources and advisors, then you make the decision based on what you feel

is the best plan for your daughter. The advisors give info from their

viewpoint and their experience, but you are the only one who is able to see

Carmen as a whole and must think how all these opinions apply to her. And

truth be known, none of us knows a for sure right answer, we simply make the

best decisions we can based on the info (and our intuition) at the time then

go forward with it.

Kim

> Michele,

>

> I know that Aubrie had a g-tube and you were able to do that without a

> fundoplication and treat reflux with meds. I have a feeling that

> Carmen will be getting a g-tube at some point--but every doctor that

> writes a report, etc. always indicates that if things start a downward

> turn, they will recommend both a g-tube and a fundo. I really don't

> want Carmen to have the fundoplication. I can handle the g-tube for

> her but the fundo seems so complicated, and perhaps unnecessary. She

> hasn't even been tested for reflux yet. I'm afraid this is going to be

> a huge battle between me and her surgeon. Any suggestions?

>

> B, mom to Zach 4.5 yrs and Carmen 20 months (charge)

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

I have a difficult time not giving my opinion on this.....sorry.....

It seems that surgeons/doctors like to do the fundo automatically with the

g-tube - whether it is necessary or not. If had had a fundo with her

g-tube life would have been awful! She has cyclical vomiting and migraines and

I can only imagine how awful she would feel if her body would not let her vomit

but her brain is telling her she needs to. Another child I know got the fundo

automatically and is trying desperately to find a surgeon to reverse it - and it

can't be reversed because when they did the fundo they cut a major muscle that

holds the stomach in place. In my mom opinion the fundo is only needed when

there is severe reflux and aspiration - or other issues that warrant it - not

just because the child needs a g-tube.

Lori Myers

Spouse - Trent, Children - (8), (5, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button (completed 8-week inpatient feeding

program and ate for 1 week - now back to 100% tube fed!), partial hearing loss,

walking as of 12/22/04!, and Emma (3)

Dallas, Texas

Re: To Michele W : G Tube with Fundo question

,

Dylan has the fundo so I can't answer that part but I can reassure you that

physicians are advisors not decision makers unless it is a life or death

situation in my view. Carmen is your child; you get information from lots

of resources and advisors, then you make the decision based on what you feel

is the best plan for your daughter. The advisors give info from their

viewpoint and their experience, but you are the only one who is able to see

Carmen as a whole and must think how all these opinions apply to her. And

truth be known, none of us knows a for sure right answer, we simply make the

best decisions we can based on the info (and our intuition) at the time then

go forward with it.

Kim

> Michele,

>

> I know that Aubrie had a g-tube and you were able to do that without a

> fundoplication and treat reflux with meds. I have a feeling that

> Carmen will be getting a g-tube at some point--but every doctor that

> writes a report, etc. always indicates that if things start a downward

> turn, they will recommend both a g-tube and a fundo. I really don't

> want Carmen to have the fundoplication. I can handle the g-tube for

> her but the fundo seems so complicated, and perhaps unnecessary. She

> hasn't even been tested for reflux yet. I'm afraid this is going to be

> a huge battle between me and her surgeon. Any suggestions?

>

> B, mom to Zach 4.5 yrs and Carmen 20 months (charge)

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

I have a difficult time not giving my opinion on this.....sorry.....

It seems that surgeons/doctors like to do the fundo automatically with the

g-tube - whether it is necessary or not. If had had a fundo with her

g-tube life would have been awful! She has cyclical vomiting and migraines and

I can only imagine how awful she would feel if her body would not let her vomit

but her brain is telling her she needs to. Another child I know got the fundo

automatically and is trying desperately to find a surgeon to reverse it - and it

can't be reversed because when they did the fundo they cut a major muscle that

holds the stomach in place. In my mom opinion the fundo is only needed when

there is severe reflux and aspiration - or other issues that warrant it - not

just because the child needs a g-tube.

Lori Myers

Spouse - Trent, Children - (8), (5, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button (completed 8-week inpatient feeding

program and ate for 1 week - now back to 100% tube fed!), partial hearing loss,

walking as of 12/22/04!, and Emma (3)

Dallas, Texas

Re: To Michele W : G Tube with Fundo question

,

Dylan has the fundo so I can't answer that part but I can reassure you that

physicians are advisors not decision makers unless it is a life or death

situation in my view. Carmen is your child; you get information from lots

of resources and advisors, then you make the decision based on what you feel

is the best plan for your daughter. The advisors give info from their

viewpoint and their experience, but you are the only one who is able to see

Carmen as a whole and must think how all these opinions apply to her. And

truth be known, none of us knows a for sure right answer, we simply make the

best decisions we can based on the info (and our intuition) at the time then

go forward with it.

Kim

> Michele,

>

> I know that Aubrie had a g-tube and you were able to do that without a

> fundoplication and treat reflux with meds. I have a feeling that

> Carmen will be getting a g-tube at some point--but every doctor that

> writes a report, etc. always indicates that if things start a downward

> turn, they will recommend both a g-tube and a fundo. I really don't

> want Carmen to have the fundoplication. I can handle the g-tube for

> her but the fundo seems so complicated, and perhaps unnecessary. She

> hasn't even been tested for reflux yet. I'm afraid this is going to be

> a huge battle between me and her surgeon. Any suggestions?

>

> B, mom to Zach 4.5 yrs and Carmen 20 months (charge)

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

Lori-

I agree wholeheartedly. It's not always a " must-do " procedure -- as the

doctors often make it seem.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Lori-

I agree wholeheartedly. It's not always a " must-do " procedure -- as the

doctors often make it seem.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Lori-

I agree wholeheartedly. It's not always a " must-do " procedure -- as the

doctors often make it seem.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Cedie had the fundo done with her g-tube surgery. They didn't really

seem like it was an option. However, she was only 2 months old and we

were overwhelmed and looking for any way to get her better and get her

home. She did had a swallow study done before hand though which showed

she had reflux. Sometimes, you can tell she feels the need to burp or

maybe spit up but it won't come up. It looks like she is gagging. I've

watched her face when this happens and it seems rather painful for

her. It is over quick though and it doesn't happen with every feeding.

If the only alternative is her aspirating into her lungs, then its not

such a bad trade off.

>

> Lori-

> I agree wholeheartedly. It's not always a " must-do " procedure -- as

the

> doctors often make it seem.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

Exactly -- if there is real aspiration, then it is necessary. The issue is

when dr's don't check that thoroughly and don't give families options. As

Kim said -- we never really know if a decision is " right " or not. We look

back and feel that our decision was right but that's because we know that

she outgrew her reflux. If she hadn't, we would probably be thinking we

made a mistake and ended up doing it later.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: To Michele W : G Tube with Fundo question

Cedie had the fundo done with her g-tube surgery. They didn't really

seem like it was an option. However, she was only 2 months old and we

were overwhelmed and looking for any way to get her better and get her

home. She did had a swallow study done before hand though which showed

she had reflux. Sometimes, you can tell she feels the need to burp or

maybe spit up but it won't come up. It looks like she is gagging. I've

watched her face when this happens and it seems rather painful for

her. It is over quick though and it doesn't happen with every feeding.

If the only alternative is her aspirating into her lungs, then its not

such a bad trade off.

>

> Lori-

> I agree wholeheartedly. It's not always a " must-do " procedure -- as

the

> doctors often make it seem.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Exactly -- if there is real aspiration, then it is necessary. The issue is

when dr's don't check that thoroughly and don't give families options. As

Kim said -- we never really know if a decision is " right " or not. We look

back and feel that our decision was right but that's because we know that

she outgrew her reflux. If she hadn't, we would probably be thinking we

made a mistake and ended up doing it later.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: To Michele W : G Tube with Fundo question

Cedie had the fundo done with her g-tube surgery. They didn't really

seem like it was an option. However, she was only 2 months old and we

were overwhelmed and looking for any way to get her better and get her

home. She did had a swallow study done before hand though which showed

she had reflux. Sometimes, you can tell she feels the need to burp or

maybe spit up but it won't come up. It looks like she is gagging. I've

watched her face when this happens and it seems rather painful for

her. It is over quick though and it doesn't happen with every feeding.

If the only alternative is her aspirating into her lungs, then its not

such a bad trade off.

>

> Lori-

> I agree wholeheartedly. It's not always a " must-do " procedure -- as

the

> doctors often make it seem.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Exactly -- if there is real aspiration, then it is necessary. The issue is

when dr's don't check that thoroughly and don't give families options. As

Kim said -- we never really know if a decision is " right " or not. We look

back and feel that our decision was right but that's because we know that

she outgrew her reflux. If she hadn't, we would probably be thinking we

made a mistake and ended up doing it later.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: To Michele W : G Tube with Fundo question

Cedie had the fundo done with her g-tube surgery. They didn't really

seem like it was an option. However, she was only 2 months old and we

were overwhelmed and looking for any way to get her better and get her

home. She did had a swallow study done before hand though which showed

she had reflux. Sometimes, you can tell she feels the need to burp or

maybe spit up but it won't come up. It looks like she is gagging. I've

watched her face when this happens and it seems rather painful for

her. It is over quick though and it doesn't happen with every feeding.

If the only alternative is her aspirating into her lungs, then its not

such a bad trade off.

>

> Lori-

> I agree wholeheartedly. It's not always a " must-do " procedure -- as

the

> doctors often make it seem.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.