RE: endoscopy/biopsy

[Guest guest]

, Hailee had endoscopy with muscle biopsy and all they really look for is infection, Hailee had the hyploric b infection in her stomach and it showed severe irratation of her esophogus. Nothing was said to me about looking for mito with that biopsy.

[Guest guest]

When my Sam had her scope and biopsy, they were basically looking for sighns

of esaphageal lesions, damage. Sams scope showed no signs of reflux. So they

elected to put in a regular g-tube. Later the biopsy came back positive for

eosinaphils which indicated reflux. So she could have benefitted from a

fundal. Did not redo surgery cause her reflux was mild if it was only seen

on biopsy. However as the time goes by, her reflux gets worse. So no I do

not believe they will address any mito issues. I beleieve that type of

muscle nneds to come from a deep muscle type tissue(deltoid lateris, femus,

ect) not esophageal muscle which is different.

>

>Reply-To: Mito

>To: <Mito >

>Subject: endoscopy/biopsy

>Date: Fri, 20 Sep 2002 21:44:34 -0700

>

>

>Hello everyone,

>Cameron (19mo) has been scheduled by the GI department at children's

>hospital in Seattle for an endoscopy study and a biopsy. I think the

>biopsy is to see if the reflux is causing damage to the esophagus. I

>was wondering if since the esophagus is a muscle the biopsy might show

> " strange " muscle fibers or other red flags for mito?

> Also has anyone had this strange anomaly: Cameron has a right aberrant

>subclavin artery that is pushing on his esophagus? It is an artery that

>comes from the heart and instead of being contained with in normal range

>in the front of the esophagus it goes behind it. He has swallowing /

>feeding issues and the GI docs have finally agreed to see how hard this

>artery is pushing against the esophagus and if it is contributing to the

>food backing up in his esophagus. Now, I know for sure this is not the

>only issue involved. He has low oral muscle tone, primitive eating

>skills, a bifid uvula, and severe esophageal dismotility, moderate to

>severe reflux and is g-tube fed. I was just wondering if anybody else

>had heard of this? Has anyone else has had an endoscopy study with or

>without biopsy? Please tell me what they were looking for and what they

>found. Any info would be appreciated.

>Sorry for the book,

> Riley

>-----Original Message-----

>

>

>

>

>

[Guest guest]

I just found your original post. I forgot to mentioin before that we discovered 's by accident while looking for something else. We adopted him when he was 6months old. When we picked him up, the foster mom told me that he didn't keep much down, but she kept feeding him anyway. He was my first baby and he was her 60th foster baby, so I figured that she knew what she was talking about. However, after trying jar food, organic baby food and making my own, nothing worked. He occasionally could keep sweet potatoes and pears down but that was it! I just felt really unsettled about him having so many problems eating (altho he was gaining wieght b/c of the formula) so I pressed the doc...we decided to allergy test and when that was negative, he suggested a barium swallow. The radiologist saw that it was laying on his trachea and esophogus. They immediately scheduled surgery...have they mentioned removing it? It was a cardio-vascular surgeon and it went fine...two nights in the hospital (they told us it would be a week). He ate regular table food right away after that.

he cant have any blood pressures or venipunctures in he right arm now.

deb

[Guest guest]

,

Cameron had a FISH study done by the

cranial facial doctor at 3mo old. It would show up on that I would

think. Thank you for the link and

info, evidently the docs thought it was a possibility too.

Re:

endoscopy/biopsy

,

There is a disorder that features at least four of

the health problems

that your son has--hypotonia, bifid uvula, reflux,

and aberrant right

subclavin artery. It is 22q11 deletion

syndrome. Has it been ruled out

for your son?

Here is website with more info:

http://www.psychiatry.med.uwo.ca/ddp/mededucation/corecur/publish/.htm

Please contact

mito-owner with any problems or questions.

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

Dena,

I think Murray has a better bedside manner, but Christie knows his stuff. I think we get Murray (She ordered it).

Thanks for the info. Perhaps this is another link in the

ongoing list of abnormalities.

Re:

endoscopy/biopsy

In a message dated 9/21/02 8:52:01 AM Pacific Daylight

Time,

mary@... writes:

<< Cameron has a right aberrant

subclavin artery that is pushing on his

esophagus? >>

Hi ,

My 19 y/o son has an aberrant right

subclavian. All 3 of my boys have

had multiple endoscopy/biopsies for their

recurrent reflux/esophagitis and

gastritis in 's case. It's a fairly

minor procedure, but does involve

sedation. Even if the initial

" look " by the doc is normal, the pathology

(biopsy) will often show abnormalities if GERD is

acting up. I've never

heard of them looking for red ragged fibers, but I

don't know. I do know

that has had eosinophils found in his

biopsy of his stomach before.

He's now on Gastrocrom 4x/day for that (for the

past couple of years and that

has helped immensely.) All 3 of my boys have

had fundoplication surgery for

reflux/recurrent pneumonias, so we've had a lot of

experience in this area.

And, with ketoacidosis from their ketone

utilization disorder causing

acidity, they've struggled with continued problems

post fundo. is

currently refluxing again, for the first time in

years. It's frustrating.

But, the first step is the one you're taking, to

find out what the

esophagus/stomach look like. Who is doing

the procedure at Childrens? Dr.

Christie and Dr. Murray have both done them on

and I've been pleased

with both physicians and how they treated one or

the other of the boys.

Dena (p.s. also has

dysmotility, documented, in answer to your

other question.)

Please contact

mito-owner with any problems or questions.

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

Thanks ,

I also am keeping Hailee

in my prayers. Sorry about the hosp. run around. I always hate being there. Keep your spirits as high as possible

and remember you are not alone.

Re:

endoscopy/biopsy

, Hailee had endoscopy with

muscle biopsy and all they really look for is infection, Hailee had the

hyploric b infection in her stomach and it showed severe irratation of her

esophogus. Nothing was said to me about looking for mito with that

biopsy.

Please

contact mito-owner with any problems or questions.

Your

use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Guest guest]

Thanks ,

I was hoping beyond what I knew was

possible with the biopsy (but we can not give up hopeJ) Cam had his g-tube at 3mo and I will not opt to go back in for the

fundo.

endoscopy/biopsy

>Date: Fri, 20 Sep 2002 21:44:34 -0700

>

>

>Hello everyone,

>Cameron (19mo) has been scheduled by the GI

department at children's

>hospital in Seattle for an endoscopy study and

a biopsy. I think the

>biopsy is to see if the reflux is causing

damage to the esophagus. I

>was wondering if since the esophagus is a

muscle the biopsy might show

> " strange " muscle fibers or other red

flags for mito?

> Also has anyone had this strange

anomaly: Cameron has a right aberrant

>subclavin artery that is pushing on his

esophagus? It is an artery that

>comes from the heart and instead of being

contained with in normal range

>in the front of the esophagus it goes behind

it. He has swallowing /

>feeding issues and the GI docs have finally

agreed to see how hard this

>artery is pushing against the esophagus and if

it is contributing to the

>food backing up in his esophagus. Now, I

know for sure this is not the

>only issue involved. He has low oral

muscle tone, primitive eating

>skills, a bifid uvula, and severe esophageal

dismotility, moderate to

>severe reflux and is g-tube fed. I was

just wondering if anybody else

>had heard of this? Has anyone else has

had an endoscopy study with or

>without biopsy? Please tell me what they

were looking for and what they

>found. Any info would be appreciated.

>Sorry for the book,

> Riley

>-----Original Message-----

>

>

>

>

>