Re: To Michele W : G Tube with Fundo question

March 7, 2006

Lori - I find it interesting that has the cyclical vomiting without

the fundo when some say the fundo causes the cyclical vomiting.

If the fundo were done without the g-tube, cyclical vomiting could be a huge

concern. Since Dylan has both he vomits through his g-tube. (just a

reassurance if any one's child already has a fundo)

I agree that they should not be done just because it is easier for the

doctor. Kim

> 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-.

>>

March 7, 2006

Bless you for responding! I welcome anyone's feedback anytime. I

only directed the question to Michele because I knew she avoided the

fundo specifically with Aubrie even though Aubrie had severe reflux.

I have a strong gut feeling on Carmen NOT getting the fundo. When I

told the surgeon that I had no problem with her getting the g-tube but

was very concerned about the fundo, he said " oh, that's no big deal,

really " . Now, we waited over 2 hours to see this guy to tell us that

about something that I know IS a big deal, thanks to you and the other

CHARGE mom's on this list. I would be lost without the guidance that

I get here. Thank you thank you thank you!!!

, mom to Zach 4.5 years and Carmen 20 months (CHARGE)

P.S, I noticed that your 5 year old was decannulated--when did

this get accomplished for her? Also, do you re type all that stuff

after your name every time you post or is there a place you can save a

" signature " . I can't seem to figure that out! Thanks again!

>

> > 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-.

> >

March 7, 2006

Good to know, thanks much.

> >>

> >> 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-.

> >

March 7, 2006

I never knew there was a link between the cyclical vomiting and the

fundo........interesting.....

Lori Myers

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