Re: Does this sound familiar?LAURA

[Guest guest]

What is a nissen? Leighann has been having apneas because of GERD

since at least 7 1/2 months old. The reflux med helps the apnea alot, but

it would be nice to fix the problem instead of medicating forever.

We have never even heard of this.

Thanks,

Lois

> [Original Message]

>

> To: <Mito >

> Date: 4/18/2005 10:49:30 AM

> Subject: Re: Does this sound familiar?

>

>

>

> If one is having apnea caused by GERD, has a Nissen been considered?

That's

> standard here. It is life-threatening to go home without assistance if

one has apnea

> associated with GERD.

>

>

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

>

> What is a nissen? Leighann has been having apneas because of GERD

> since at least 7 1/2 months old. The reflux med helps the apnea alot, but

> it would be nice to fix the problem instead of medicating forever.

> We have never even heard of this.

Your GI should have told you about a Nissen. It is a surgical procedure which

makes it

physically impossible to reflux. Meds don't stop reflux. They're not meant to.

They

only raise the pH of gastric contents which limit damage caused by GERD. I'd be

really

surprised if they affect reflux apnea.

A Nissen fundoplication is often done laproscopically for an older child or an

adult.

Our daughter had one at two. It was done open. It is a difficult surgery and

recovery

was prolonged. But it saved her lungs. It has loosened up over time and I expect

her

to need the surgery again at some point.

http://www.geocities.com/fundofamilies/description.html

http://www.lapsurgery.com/nissen.htm

http://heartburn.about.com/od/fundoplication/

http://www.umm.edu/surgeryhome/nissen.html

http://www.aurorahealthcare.org/yourhealth/healthgate/

getcontent.asp?URLhealthgate=%2214813.html%22

I describe the surgery kind of like this. They pull the esophagus down a bit

below the

level of the diaphragm. Then they wrap the top of the stomach (the fundus)

around

the esophagus. It looks a bit like a hot dog (esophagus) in a bun (stomach).

This

makes the stomach too large to go past the level of the diaphragm and makes it

impossible for stomach contents to reflux up. it kind of creates a valve there

at the

top of the stomach.

GERD Word is a great place for support when you have kids with GERD.

http://www.network54.com/Forum/109925

[Guest guest]

,

Thanks for the info. Actually we have NEVER even been referred to a GI.

Our pulmonologist treats the reflux and apnea. There were other GI issues

when she was younger I think she outgrew, but I really think seeing one

would benefit her. Again, thanks for the info. She is on an apnea monitor,

before he put her on the zantac, she would have a lot of apneas throughout

the night, every night. After the zantac it went down to one or two per

night,

then maybe once a week, then occasionally, when the reflux is worse, her

apneas

get more frequent. These are just the apneas that the monitor catches, after

20 seconds, I still catch apneas often for 5 to 10 seconds when I put her

to

sleep and still holding her, those haven't gotten better, just shorter

versions.

Again thanks so much for the info, I never fully understood why a

pulmonologist treated

reflux anyway.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 4/19/2005 11:23:14 AM

> Subject: Re: Does this sound familiar?LAURA

>

>

>

>

> >

> > What is a nissen? Leighann has been having apneas because of GERD

> > since at least 7 1/2 months old. The reflux med helps the apnea alot,

but

> > it would be nice to fix the problem instead of medicating forever.

> > We have never even heard of this.

>

> Your GI should have told you about a Nissen. It is a surgical procedure

which makes it

> physically impossible to reflux. Meds don't stop reflux. They're not

meant to. They

> only raise the pH of gastric contents which limit damage caused by GERD.

I'd be really

> surprised if they affect reflux apnea.

>

> A Nissen fundoplication is often done laproscopically for an older child

or an adult.

> Our daughter had one at two. It was done open. It is a difficult surgery

and recovery

> was prolonged. But it saved her lungs. It has loosened up over time and I

expect her

> to need the surgery again at some point.

>

> http://www.geocities.com/fundofamilies/description.html

> http://www.lapsurgery.com/nissen.htm

> http://heartburn.about.com/od/fundoplication/

> http://www.umm.edu/surgeryhome/nissen.html

> http://www.aurorahealthcare.org/yourhealth/healthgate/

> getcontent.asp?URLhealthgate=%2214813.html%22

>

> I describe the surgery kind of like this. They pull the esophagus down a

bit below the

> level of the diaphragm. Then they wrap the top of the stomach (the

fundus) around

> the esophagus. It looks a bit like a hot dog (esophagus) in a bun

(stomach). This

> makes the stomach too large to go past the level of the diaphragm and

makes it

> impossible for stomach contents to reflux up. it kind of creates a valve

there at the

> top of the stomach.

>

> GERD Word is a great place for support when you have kids with GERD.

> http://www.network54.com/Forum/109925

>

>

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

> Again thanks so much for the info, I never fully understood why a

> pulmonologist treated

> reflux anyway.

Lois,

I think that you need a really good GI. A pulmo isn't qualified to treat GERD.

Zantac is

certainly not the strongest thing you can have to treat it either. How old is

your child?

Apnea monitors meant for infants don't pick up that well on older children. Have

you

had a sleep study in a certified lab? They can do them with pH probes. I'd throw

a

hissy fit and get the care you guys deserve.

[Guest guest]

,

I agree we need to see a GI, hopefully we can find a good one, but I talked

to her ped today to get the ball

rolling. I very, very much appreciate what you said about the infant

monitor. Leighann is almost 2 1/2 years

old. She only weighs about 24-25 lbs, so I was okay with the monitor we've

got, but it does not pick up

some things. She has had a really weird thing happening during sleep at

times and it registers as normal

breaths, I've watched it. She starts, well, its really hard to explain in

words, but, I know we've ALL heard

when a child cries really hard, then when the actual crying stops, the

sobbing? sound afterwards, like I said,

very hard to explain, it's almost like a hyperventilating, well she will

be asleep and I'll hear this and I physically

have to wake her up to get her to breath normal, then she will and

everything is fine, well this monitor doesn't

even catch this at all, and it's loud enough to wake me up (her crib is

next to my bed). I have talked to her ped

also about finding a better, more age appropriate monitor, she has apnea,

she also has slow heartbeat at times,

then these episodes also. Any idea of a more appropriate monitor, this way

at least I can tell the ped kind of what is available.

Most of the companies here only have the infant ones, so if I can point her

in the right direction I would appreciate

it.

Leighann has had a sleep study at a sleep lab, of course these strange

episodes didn't happen then, but she did have the

apneas, mostly central, some obstructive, although he was not really

concerned. I'll have to look up the results, we got a copy of it.

Her O2 stats did drop with some of the apneas, but nothing dangerous, at

least it didn't look dangerous to me. I remember

when I read the report after he told us the results it seemed like two

different stories.

Thank you for the advice. Our pediatrician is incredible. We love him so

much, he takes a very personal interest in Leighann,

unfortunately he had no idea about mito before us, but he has been so

willing to learn, and is really good at getting what we

ask for, and if he doesn't understand why we need it he goes through the

trouble of finding out why and contacting the specialists

and getting all the reports just to make sure he is kept up to date on

everything. He is just learning though, and he is truly trying,

so if I can help him to make sure she gets what she needs, and save him a

few steps in finding things, I do.

Thanks again, I'm learning too, and all advice is truly appreciated.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 4/19/2005 11:20:17 PM

> Subject: Re: Does this sound familiar?LAURA

>

>

>

> > Again thanks so much for the info, I never fully understood why a

> > pulmonologist treated

> > reflux anyway.

>

> Lois,

>

> I think that you need a really good GI. A pulmo isn't qualified to treat

GERD. Zantac is

> certainly not the strongest thing you can have to treat it either. How

old is your child?

> Apnea monitors meant for infants don't pick up that well on older

children. Have you

> had a sleep study in a certified lab? They can do them with pH probes.

I'd throw a

> hissy fit and get the care you guys deserve.

>

>

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>