Re: Operation to Seal of Reflux Question, another thought

[Guest guest]

Hi ,

I just assumed that they've tried medications... pepcid, etc. My son is

on pepcid and it helps quite a bit.

Anne

Re: Operation to Seal of Reflux Question

Thanks Anne

Appreciate the response. Yes, I think the Nissen is what I am referring

to.

It's just in the last month that he has started reflux. We tried

thickening

agents but it is just getting worse. Admittedly often when he has worked

himself up into a state. Unfortunately he requires constant rocking from

side to side or else he arches himself backwards and starts niggling.

When

this (rocking) happens after meals i'm sure it contributes but he has

started to reflux even when calm which is the worry.

Operation to Seal of Reflux Question

>

> Hi All

>

> My 18 month son Connor has Mito - suspected Leigh Disease. Despite

> having extremely low muscle tone, hearing loss, eye sight loss, G-tube

> (all feeds) etc, etc he has never had reflux which has always stunned

> our doctors.

>

> Unfortunately very recently his reflux started. It has been

> recommended that he has an operation to seal of the reflux -

presumably

> by tieing off the stomach.

>

> From a practicle point of view Connor does not eat anything via the

> mouth - all feeds are done via the tube. We also don't expect this

> situation to change in the future.

>

> My question is, is this operation safe and is it the standard thing

to

> do in this situation. We live in South Africa and have no Mito

> specialists here. I am not overly concerned from an anaesthetic point

> of view as he has had many (2 x MRI, Biopsy, tonselectomy and others)

> and has as far as we could tell no negative side effects.

>

> We have been told that this must be done to prevent pneumonia. It

just

> feels so permanent.

>

> Any guidance in this regard i'd appreciate it.

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

> --------

>

[Guest guest]

Our son who is 13 had the half nissen fundoplication just a while ago...to let you know it has made his reflux WORSE. He has a G tube and also a pylorectomy. We were told it would be good to have the fundo as it would help with the reflux a lot, but our mito Dr said some kids it actually increases the reflux and also it makes the stomach smaller when they manipulate it for the surgery so they actually take less in via tube....we have not found the stomach to have shrunk any but the reflux has definitely gotten worse, and he is still on protonix and pepcid....

I don't want to confuse you, but I think each kid is different and each kid responds so differently. SO you need to ask how severe the reflux is and see if it is worth it. ours had erosive esophogitis and ulcers too...this surgery was to prevent further damage and also protect him some from esophageal cancer which can occur in people who continue to erode the natural lining.

hope I have helped some

Donna

mito mom to 5 mito kids

Operation to Seal of Reflux Question>> Hi All>> My 18 month son Connor has Mito - suspected Leigh Disease. Despite> having extremely low muscle tone, hearing loss, eye sight loss, G-tube> (all feeds) etc, etc he has never had reflux which has always stunned> our doctors.>> Unfortunately very recently his reflux started. It has been> recommended that he has an operation to seal of the reflux - presumably> by tieing off the stomach.>> From a practicle point of view Connor does not eat anything via the> mouth - all feeds are done via the tube. We also don't expect this> situation to change in the future.>> My question is, is this operation safe and is it the standard thing to> do in this situation. We live in South Africa and have no Mito> specialists here. I am not overly concerned from an anaesthetic point> of view as he has had many (2 x MRI, Biopsy, tonselectomy and others)> and has as far as we could tell no negative side effects.>> We have been told that this must be done to prevent pneumonia. It just> feels so permanent.>> Any guidance in this regard i'd appreciate it.>> >>> Please contact mito-owner with any problems or> questions.>>> -------->

[Guest guest]

> I just assumed that they've tried medications... pepcid, etc. My son is

> on pepcid and it helps quite a bit.

>

Anne,

You know that there's no med that will stop reflux? Pepsid, etc will increase

the pH

and decrease the damage done but won't stop the refluxing. Even gastric contents

with increased pH will damage the lungs. Reglan can help somewhat by moving

stomach contents along so they're in the stomach for a shorter time but nothing

really stops GERD as far a medicine goes.

[Guest guest]

Have they checked the stomach to see if the operation was successful and still

in

place? I'd not want a half Nissen. Our daughter had a full Nissen. She eats but

the

surgery had a difficult recovery. It didn't fix everythign. She still is on

Nexium. But

she's much better than she was before. She can no longer hit a moving target

with

her vomit---which is much better for her lungs.

[Guest guest]

Wow - I didn't know that at all!

Anne R

Re: Operation to Seal of Reflux Question, another

thought

> I just assumed that they've tried medications... pepcid, etc. My son

is

> on pepcid and it helps quite a bit.

>

Anne,

You know that there's no med that will stop reflux? Pepsid, etc will

increase

the pH

and decrease the damage done but won't stop the refluxing. Even gastric

contents

with increased pH will damage the lungs. Reglan can help somewhat by

moving

stomach contents along so they're in the stomach for a shorter time but

nothing

really stops GERD as far a medicine goes.

Please contact mito-owner with any problems or

questions.