Re: Questions for the doctor

[Guest guest]

,

I think " some " kids may have problems but others don't, and I don't think it's

just " these kids " (I agree - yuk). The docs told me before surgery there is a

30% failure rate for fundoplications - CHARGE or No CHARGE... so I don't think

it's got to do with the fact that they have CHARGE. I cannot BELIEVE what you

have been through, I shuddered reading about all the gastrostomies Rebekah has

had done, that is unreal! We've just had the one, done at 6 months of age, and

the Nissen was done at the same time. We are now at 4 years of age and all is

still well (knock wood).

This is just my opinion, but I think if the Nissen didn't work, what makes them

think the Thal would????

Weir

Mom to Kennedy 4yr old CHARGEr, 12, 10, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://personal.nbnet.nb.ca/gweir

ICQ #1426476

" In three words I can sum up everything I've learned about life: it goes on. "

- Frost

Re: Questions for the

> doctor

>

>

> Hi all,

>

> I just recently joined the group and I think

> I am

> coming in on this midway through the thread.

>

> I was curious if repeat fundoplications are

> typical for kids with CHARGE? What about

> repeat

> gastrostomies?

>

> GI-wise, Rebekah (my 4 year old with CHARGE)

> has

> had 2 Nissens, 4 gastrostomies, and finally a

> jejunostomy when the doctor could not get

> through

> the scar tissue to redo the last Nissen.

> Presently she has a dual intake manifold

> (G-Button and J-tube), but the surgeon thinks

> she

> may have prolasped her stomach again.

>

> We recently relocated to Houston from Dallas.

> Of

> course, we have to see all new doctors and

> they

> are driving me crazy with wanting to do

> everything different.

>

> The GI wants to try a different type of Fundo

> (anyone heard of a Tahl?)and get her to use

> her

> stomach again. The surgeon want to do a

> Rue-N-Y

> (sounds like " ruin-why? to me!). which is a

> different kind of jejunostomy than what she

> has,

> so she can get rid of the g-button.

>

> The ENT wants to decanullate (sp?) her, but

> the

> doc is Dallas was quite happy with the

> situation

> (breathing is a good thing -right?) I am

> scared

> to go see any of the other 12 specialist. I

> thought we had just got her stable and here

> everyone wants to overhaul her.

>

> Paz,

>

>

>

>

>

>

>

> --- TKRENCICK1@... wrote:

> > What were Aubrie's symtoms that led the

> docs to

> > do the fundo again? My son

> > had the Nissen type at a young age and now

> at

> > 11 they are looking into the

> > need to redo it. His bronch showed no

> > aspiration in the lungs but did show

> > an inflamed area in the esophagus which may

> > suggest some reflux. I dont want

> > to have him go through another surgery. He

> > will go for an upper GI in March

> > to check the wrap area. Krencicki re:

> > BRadley

> >

> >

> > [Non-text portions of this message have

> been

> > removed]

> >

> >

>

>

>

>

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>