Re: 15 y/o update...now what?

[Guest guest]

Greetings Maureen!

I am sure you have seen the crazy numbers of posts that say... Get a Competent

Specialist!   It is really true!

As an investment in your daughters future quality of life... a renowned

specialist is worth a thousand words.

the first steps are your barium swallow and the endoscopy and then the

manometry.

This will tell your qualified specialist all they need to know.  Have you

shared where you are and whom you are seeing?

If I drove a Ferrari ( your kid) , I would not let the corner garage mechanic 

work on it, nor the Chevy dealer. ( no offense to any mechanics here)

Carolyn

mom of Cameron

myo'd and fundo'd in 05!!!

From: Maureen <mmyoung5758@...>

Subject: 15 y/o update...now what?

achalasia

Date: Wednesday, March 7, 2012, 10:53 AM

 

I bought my dd in for a barium swallow and was told I needed an endoscopy.

So we just got home and shes sleeping it off and wanted to share some things

said to us.

History- Had HM 2 yrs ago. Had 3 Dilatations last year and is having issues now

again.

Thoughts- I find it odd that this year and last year her symptoms returned at

the EXACT same time of year. To the week actually. At first in Jan. I thought

she had the flu and let it slide. When she started again with no fever or

achyness I thought no this is A. Do you think the flu can set off her A?? Winer

time being that it is flu season bought this to mind.

GI Specialist- Felt she didnt need a Dilaation as the tube went down through the

valve fine. My dd says it gets stuck in her throat. They took a biopsy and I

will not know the result for 2 wks as he goes on vacation next week along with

his nurse. I asked if the E was inflamed...couldnt answer. He also thought she

may have an infection which may need to be treated with antibiotics. Lastly he

thought she may have Globisim. It is bascially in her mind and its a psyche

issue. Hmm...

What are your thoughts.

Thanks

Maureen

[Guest guest]

It isn't in her head!!!! We were told the same thing, however, when the movie of

my daughter's barium swallow was watched by our surgeon, it was clear the

neurological issues had become primary. The food would sit mid esophagus, then

go up go down, go back up. There were no constrictions, all nerve induced.

Nothing to repair. We actually tried bio-feedback. Waste of time and added to

our daughters's sense of failure. The time of year you daughter is getting sick

may have more to do with her picking up something at school, getting run down,

and the A jumping on the wagon while her defenses are down. Leigh used to have

major A symptoms when she would pick up something as simple as a cold.

Sent from my iPhone

[Guest guest]

I agree completely with Carolyn, get a specialist, great comparison to car

mechanic

California

[Guest guest]

I got a cold back in december that turned into a viral infection that ulcerated

and I think overall it ran down my immune system. It made it much harder to

swallow and still keep getting these viral infections.

Most people know if they can or can't swallow properly. I would definitely seek

another opinion from someone who knows how to treat Achalasia. Although my

current GI has not done as many dilations as I would have liked, his experience

lies in motility disorders, such as A and he takes the time to really explain

things to me. This is very important if you are going to fell comfortable in

hime making decisions that will affect her overall quality of life.

 

Good luck!

 

Kim A

Wisconsin

________________________________

From: Helene Stovall <stovall.h@...>

" achalasia " <achalasia >

Sent: Wednesday, March 7, 2012 1:24 PM

Subject: Re: 15 y/o update...now what?

 

It isn't in her head!!!! We were told the same thing, however, when the movie of

my daughter's barium swallow was watched by our surgeon, it was clear the

neurological issues had become primary. The food would sit mid esophagus, then

go up go down, go back up. There were no constrictions, all nerve induced.

Nothing to repair. We actually tried bio-feedback. Waste of time and added to

our daughters's sense of failure. The time of year you daughter is getting sick

may have more to do with her picking up something at school, getting run down,

and the A jumping on the wagon while her defenses are down. Leigh used to have

major A symptoms when she would pick up something as simple as a cold.

Sent from my iPhone