Re: Operation to Seal of Reflux Question

[Guest guest]

like was said before, every child is different. Have they tried medication first or do they want to do the surgery right away....because they have been expecting to have reflux for so long....

Also, I am sure you have tried this, but since it was not mentioned I thought I just do. Something that helps somewhat with reflux is to have Connor sit and lay always at an angle. Never ever flat. Specially after meals and whenever he goes to sleep. There some great websites available by doing a search on GERD. Sorry I do not have them handy anymore. I specially remember one for kids.

A different question. Is there any way for your medical team is willing to connect with some of the specialists in the world to get second opinions or simply brainstorm and get input from a mito specialist. I realize not all doctors are open to that.

Keep us posted.

rosy, mom to max, nearly 6

caringbridge.org/ca/mandc

[Guest guest]

Hi ,

My son is almost completely g tube fed and now he has a cecostomy tube

because his intestines cannot move stool out his bottom, but he has not

had a nissen (that's the operation I think you are referring to).

Asher, my son, does have a small amount of reflux but nothing so

serious that we had to worry about pneumonia. But, aspiration (inhaling

refluxed material into the lungs) is a serious issue with reflux and

can cause pneumonia. Asher does not do this on a regular occasion, but,

once when he had a tummy bug and was vomiting, he aspirated some stuff

into his lung and ended up in the hospital on 02 for a week. I think

the nissen is fairly standard for kids who reflux enough that

pneumonias can be an issue. I'm sure others on this line can add info

about a major surgery and Leigh's disease - that one I don't have

personal experience with.

Anne R - mom to Asher (Complex III defect, and partial Complex I defect)

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]

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]

Hello ,

We have four children and three of them have had

this surgery. First, are they speaking of doing a

Nissen fundoplication? If so.. it surely is not a

permanent thing... they are still able to eat by mouth

as well. At first they need to eat liquids or pureed

foods but they are able to eat still.

Like I said three of our children have had this

done.. there are good and bad things to the surgery.

We however have not experienced many of the bad with

all three of our children. Our older daughter had it

done when she was three years old.. she ate orally as

well as G tube fed... we had to learn the hard way

that they can no longer burp so you need to burp them

out the G tube. That is the real key to success after

a nissen is done in our opinion. If you keep burping

out the G tube often they have less gagging and dry

heaving and pain. If you do not do this they are

distended and have alot of pain.

Our other two children had this done as infants

due to multiple birth defects and have had no problems

since we are used to needing to burp thru the tubes

for our older daughter.

We have never had any kind of aspiration with any

of our children since they had this done. Our daughter

now four years later CAN vomit thru the nissen and if

she is extremely distended she will burp a tiny bit

now... then we vent the rest out the G tube. She eats

pizza, burgers, chicken, chips, all the things any

other child eats as well as being continuously tube

fed. So dont think the surgery would mean she would

never be able to eat again. Since you are already tube

feeding her the biggest issue you will see is that the

stomach will essentially be cut in half. Half the size

that it is now so you can not feed alot at once and

might have to go to continuous feeds for a while if

you are bolus feeding now. That is hard to get used to

but it is much better than the reflux/pain/vomiting/

apirating that she could do with the reflux.

Good luck and hope you get alot of response to

this. I know alot of people have this done and it is

the common practice in the US to do a nissen at the

time of G tube placement.

Kimberley

--- Rich

wrote:

> 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.

>

>

__________________________________________________

[Guest guest]

,

A Nissen fundoplication does not make it impossible to eat. It doesn't seal off

anything. I'd ask the docs the name of the operation they're considering. My

daughter

used to be totally g-tube fed but is now a total oral eater. I've known adults

who had

the Nissen fundoplication and they've never had g-tubes in their lives. The

surgery

doesn't seal anything off. If it did, a person would be unable to swallow their

own

spit. Surgery or not, you'll have spit to swallow. If you can't swallow spit,

you've got a

whole bunch of new problems.

[Guest guest]

Thanks to everyone that has responded...I have found it most informative.

Re: Operation to Seal of Reflux Question

>

> Hello ,

> We have four children and three of them have had

> this surgery. First, are they speaking of doing a

> Nissen fundoplication? If so.. it surely is not a

> permanent thing... they are still able to eat by mouth

> as well. At first they need to eat liquids or pureed

> foods but they are able to eat still.

> Like I said three of our children have had this

> done.. there are good and bad things to the surgery.

> We however have not experienced many of the bad with

> all three of our children. Our older daughter had it

> done when she was three years old.. she ate orally as

> well as G tube fed... we had to learn the hard way

> that they can no longer burp so you need to burp them

> out the G tube. That is the real key to success after

> a nissen is done in our opinion. If you keep burping

> out the G tube often they have less gagging and dry

> heaving and pain. If you do not do this they are

> distended and have alot of pain.

> Our other two children had this done as infants

> due to multiple birth defects and have had no problems

> since we are used to needing to burp thru the tubes

> for our older daughter.

> We have never had any kind of aspiration with any

> of our children since they had this done. Our daughter

> now four years later CAN vomit thru the nissen and if

> she is extremely distended she will burp a tiny bit

> now... then we vent the rest out the G tube. She eats

> pizza, burgers, chicken, chips, all the things any

> other child eats as well as being continuously tube

> fed. So dont think the surgery would mean she would

> never be able to eat again. Since you are already tube

> feeding her the biggest issue you will see is that the

> stomach will essentially be cut in half. Half the size

> that it is now so you can not feed alot at once and

> might have to go to continuous feeds for a while if

> you are bolus feeding now. That is hard to get used to

> but it is much better than the reflux/pain/vomiting/

> apirating that she could do with the reflux.

> Good luck and hope you get alot of response to

> this. I know alot of people have this done and it is

> the common practice in the US to do a nissen at the

> time of G tube placement.

>

> Kimberley

> --- Rich

> wrote:

> > 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.

> >

> >

>

> __________________________________________________

>

[Guest guest]

,

I am late in replying to this but I did want to put in

my 2 cents worth. My son Lucas has a J-tube to

prevent the reflux and he receives all his feedings

via that. This prevented him from going through a

major surgery that is not always successful and that

can help with decreasing the contents in the stomach.

There are many side effects with that however since it

is a drip feeding versus bolus feedings etc. My son

actually has two stomas one in his stomach and one in

his jejuneum. We vent out his stomach most of the day

into a bag to also decrease the amounts in his

stomach. Feel free to ask me any further questions.

Loriann -mom to and 12.5 yr old twins and

Lucas 9 years old with mito, FOD (LCHAD), cortical

visual impairment, GERD, impaired motility, ataxia,

seizures, J-J tube fed etc.

--- Rich

wrote:

> 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.

>

>