Newbie seeking advice

[Guest guest]

I've had a dozen or more endoscopies, and never heard of it without drugs.

You do have to be able to respond, I guess, so it's a kind of " twilight " drug

in which you actually are awake, but can't remember a thing afterward. I've

seen some comments from people here that huge doses of it didn't help them,

but it has always helped me. I don't remember a thing.

I had a motility test, and had to be awake. There may be some kind of

relaxant, but you have to be able to swallow. They don't force the tube

down, you swallow it down, and it makes you gag, but otherwise, I didn't

think it was too bad. People with achalasia really don't have the swallowing

mechanism much (I think it is called " aperistalsis " , so they must push it

down some. After the tube is down, they keep giving you swallows of

something, move the tube around to test different areas.

If you are really nervous, maybe they will give you a relaxant, but I doubt

that a complete sedation is possible.

Good luck -- I've had this for over 30 years, and looking at a second myotomy

-- the first was in 1971!

a

[Guest guest]

Dear a, I thought a myotomy is a one shot deal? Elena

[Guest guest]

My doctor (gastroenterologist) says it is supposed to be, but it is possible

that they either did not cut all the way through, or it could have healed

back. I don't think it is very common, though. It has been 30 years. I'm

going to ask the surgeon aboutit myself, when I go on Wednesday.

a

[Guest guest]

Hi - I'm sorry I've taken so long to reply to your message, which by now,

may be moot. In terms of sedation for the motility study, the only thing

I've heard, through this group, is that it is possible to have some slight

sedation - a mild dose of valium as well as a lidocaine spray for the back

of the throat - during the procedure. If you haven't had this test

performed yet, I don't want to alarm you, but it will be an ordeal. I'm

extremely surprised that you were well sedated for the endoscopy. I was

given Versed for mine, which rendered me virtually unconscious; I remember

nothing about the endoscopy at all. Wish I could say the same for the

motility study - I have a very strong gag reflex and it was torture for me.

If you're at all anxious about the procedure, I'd ask my MD just what

options are available to increase your comfort during the test. It

shouldn't take 180 minutes - more like 30 to 60.

Good luck -

Carol

Newbie seeking advice

> Hi, folks!

>

> I'm definitely one of the newest of the new. It wasn't until a week ago

> that I'd even *heard* of achalasia, but that was during my endoscopy, with

> both doctors agreeing that's what it looked like. Of course, they're

going

> to do tests to be sure, including the esophageal motility test (this

Friday)

> and a barium sweep (last one in August 2000).

>

> I think my symptoms are usually in the mild end of the spectrum, although

I

> have had times when I can't swallow even straight water, and I am the

> slowest person at any dinner table (a major change from the former quick

> eater I was!).

>

> I'm looking for some advice about some kind of sedation during the

motility

> test. When I had the endoscopy, they said that sedation wasn't necessary

or

> usual. I found out later from a good friend who is also a nurse that she

> was advised by doctors and nurses to take the drugs. Well, I wish I had!

> They had trouble turning the scope, and it was *the* most painful and

> uncomfortable thing I've been through. (But then I never tried root

canals

> without drugs!) Since I'm told the motility test will take longer (from 30

> to 180 minutes), I'm wondering if should ask for the sedation. They

don't

> knock you out entirely or anything, but I'm interested in what you, with

way

> more history than I with these things, would recommend. Thanks!

>

> Havi Echenberg

>

>

>

>

>

>

[Guest guest]

Hi Havi,

I don't wish to bring you bad news but I believe that you are unable

to have any form of sedation during the motility test as it affects

the results. It is not the most pleasant of things but the tube is

really quite narrow. You are able to be sedated for an endoscopy

though, infact if you really wish and you hate it that much you can

have a general anesthetic, as I have done in the past.

Hope all goes well

Jess

> Hi, folks!

>

> I'm definitely one of the newest of the new. It wasn't until a

week ago

> that I'd even *heard* of achalasia, but that was during my

endoscopy, with

> both doctors agreeing that's what it looked like. Of course,

they're going

> to do tests to be sure, including the esophageal motility test

(this Friday)

> and a barium sweep (last one in August 2000).

>

> I think my symptoms are usually in the mild end of the spectrum,

although I

> have had times when I can't swallow even straight water, and I am

the

> slowest person at any dinner table (a major change from the former

quick

> eater I was!).

>

> I'm looking for some advice about some kind of sedation during the

motility

> test. When I had the endoscopy, they said that sedation wasn't

necessary or

> usual. I found out later from a good friend who is also a nurse

that she

> was advised by doctors and nurses to take the drugs. Well, I wish

I had!

> They had trouble turning the scope, and it was *the* most painful

and

> uncomfortable thing I've been through. (But then I never tried

root canals

> without drugs!) Since I'm told the motility test will take longer

(from 30

> to 180 minutes), I'm wondering if should ask for the sedation.

They don't

> knock you out entirely or anything, but I'm interested in what you,

with way

> more history than I with these things, would recommend. Thanks!

>

> Havi Echenberg

[Guest guest]

Havi,

I have always had both demerol and versed for all 60 or more of my dilatations. If you have just an endoscopic exam it can be done without the above meds. but I would certainly ask for them if you experienced pain. The motility study at least mine, were done without pain med or sedation and I could tolerate it well. Of course the numb your gag reflex.

ED

Newbie seeking advice

Hi, folks!I'm definitely one of the newest of the new. It wasn't until a week agothat I'd even *heard* of achalasia, but that was during my endoscopy, withboth doctors agreeing that's what it looked like. Of course, they're goingto do tests to be sure, including the esophageal motility test (this Friday)and a barium sweep (last one in August 2000).I think my symptoms are usually in the mild end of the spectrum, although Ihave had times when I can't swallow even straight water, and I am theslowest person at any dinner table (a major change from the former quickeater I was!).I'm looking for some advice about some kind of sedation during the motilitytest. When I had the endoscopy, they said that sedation wasn't necessary orusual. I found out later from a good friend who is also a nurse that shewas advised by doctors and nurses to take the drugs. Well, I wish I had!They had trouble turning the scope, and it was *the* most painful anduncomfortable thing I've been through. (But then I never tried root canalswithout drugs!) Since I'm told the motility test will take longer (from 30to 180 minutes), I'm wondering if should ask for the sedation. They don'tknock you out entirely or anything, but I'm interested in what you, with waymore history than I with these things, would recommend. Thanks!Havi Echenberg

[Guest guest]

Hi,

Generally they don't like to give sedatives during the motility test

for reasons just as you said below. However I have heard of some

cases where they do, based on the patients intolerance for the

procedure. I'm sure they'd try it first without.

Surprisingly, I get the feeling that medical staff don't seem to

think this test rates very high on the discomfort level - but I know

I found it pretty bad, as have a lot of people in this group.

I had sedation for my endoscopies, and wasn't told there was a choice

about it. I believe they often do a conscious sedation where you are

not asleep but can respond to commands and stuff. Typically you don't

remember anything afterwards. I do remember part of a balloon

dilation I had once though :-( which was quite nasty.

> > Hi, folks!

> >

> > I'm definitely one of the newest of the new. It wasn't until a

> week ago

> > that I'd even *heard* of achalasia, but that was during my

> endoscopy, with

> > both doctors agreeing that's what it looked like. Of course,

> they're going

> > to do tests to be sure, including the esophageal motility test

> (this Friday)

> > and a barium sweep (last one in August 2000).

> >

> > I think my symptoms are usually in the mild end of the spectrum,

> although I

> > have had times when I can't swallow even straight water, and I am

> the

> > slowest person at any dinner table (a major change from the

former

> quick

> > eater I was!).

> >

> > I'm looking for some advice about some kind of sedation during

the

> motility

> > test. When I had the endoscopy, they said that sedation wasn't

> necessary or

> > usual. I found out later from a good friend who is also a nurse

> that she

> > was advised by doctors and nurses to take the drugs. Well, I

wish

> I had!

> > They had trouble turning the scope, and it was *the* most painful

> and

> > uncomfortable thing I've been through. (But then I never tried

> root canals

> > without drugs!) Since I'm told the motility test will take longer

> (from 30

> > to 180 minutes), I'm wondering if should ask for the sedation.

> They don't

> > knock you out entirely or anything, but I'm interested in what

you,

> with way

> > more history than I with these things, would recommend. Thanks!

> >

> > Havi Echenberg

[Guest guest]

Hello Parents,

I am so glad I found this group. My child just turned 4. His ST suspects

apraxia. He definetly has problems with articulation and in making words

reproducibly from sounds. His speech is understood by context and mostly by

me. He also deletes consonants at the end of words. He has problems with

multisyllable words and in stringing words into sentences. He prefers

speaking in sentences over words (with great pauses in between to retrieve

all the words to say them). So as you see, speech production is very hard

work and inefficient while there is intent. He is struggling (along with

his parents).

I would like to make sure that I am giving the correct amounts of fish oil

and related supplements to help with speech sound and coordination and would

sincerely appreciate your input and insight.

I looked through the files and some messages and came up the following

recommendations:

- EPA: 558 mg

DHA: 174 mg

GLA: 60 mg •

- Vitamin E as an antioxidant: 400IU of alpha tocopherol?/day along

with some mixed tocopherols?- how much?

- L-Carnitine for lipid processsing if deficient (which he is): ie

25-50 mg/kg/day divided

into 3 doses.

Are they correct? We use Vital Nutrients Fish Oil (only for now- it is too

expensive) and NNaturals Cod Liver Oil (I like it for the VitA). Until

recently I was using Pro-DHA. But the above ratios are not maintained with

our fish oils, I will work towards it (my child is 40lbs). We don't have a

source for GLA- is borage oil a good source? Also, can anyone give me a

recommendation for VitE? We are using Freeda VitE but I would like use

something else, hopefully soy-free if possible. Also a source for

L-Carnitine and sources for fish oil with high EPA/DHA ratios will be

helpful.

Any input about the doses and the effects it had on your child, how soon you

saw something positive or negative and any of your experience will be of

great interest to me.

Thanks a lot in advance,

Smita

[Guest guest]

Dear Smita,

How deficient in carnitine? Your pediatrician should write you a

perscription for levocarnitine liquid, and dose 25-50 mg/kg/day

divided into 3 doses, depending on the severity of the deficiency.

Starting with 10 mg/kg/dose is a good place to start and easy to

calculate.

Has your son been tested for celiac disease?

Cut and paste from previous post below:

Consider below: I buy on-line from Nordic naturals

Supplement with omega 3/6/9 (2 caps) + 1 pro-EPA given 2-3 times a

day. (Twice a

day may be sufficient with Vit E)

Vit E (alpha " d " tocophorol) NOT synthetic " dl " 400 IU

Gamma tocophorol 200-300 mg day (I use Jarrow brand but others are

fine)

Dr. Ron's Ulta E is soy free...and very expensive. There are also

other forms of " Dry E " that are soy free. Some of the gamma brands

are from rice rather than soy, but most are from soy. We also have

rice allergies in our house, so finding a safe vit e was difficult

at first.

Consider comprehensive multivit. Marilyn Agin recommended the

following to

me: Super NuThera from Kirkman's Labs

http://www.kirkmanlabs.com/products/multivitamins/super_nuthera/snt_3

07_454.

html.

L-Carnitine if testing shows a deficit.

Consider a trial of gluten/casein free diet, but I would give the

above

supplements at least a month or 2, since the diet may not be

necessary?

Unless celiac positive, of course.

Hello Parents,

I am so glad I found this group. My child just turned 4. His ST

suspects

apraxia. He definetly has problems with articulation and in making

words

reproducibly from sounds. His speech is understood by context and

mostly by

me. He also deletes consonants at the end of words. He has

problems with

multisyllable words and in stringing words into sentences. He prefers

speaking in sentences over words (with great pauses in between to

retrieve

all the words to say them). So as you see, speech production is very

hard

work and inefficient while there is intent. He is struggling (along

with

his parents).

I would like to make sure that I am giving the correct amounts of

fish oil

and related supplements to help with speech sound and coordination

and would

sincerely appreciate your input and insight.

I looked through the files and some messages and came up the

following

recommendations:

- EPA: 558 mg

DHA: 174 mg

GLA: 60 mg •

- Vitamin E as an antioxidant: 400IU of alpha tocopherol?/day

along

with some mixed tocopherols?- how much?

- L-Carnitine for lipid processsing if deficient (which he is): ie

25-50 mg/kg/day divided

into 3 doses.

Are they correct? We use Vital Nutrients Fish Oil (only for now- it

is too

expensive) and NNaturals Cod Liver Oil (I like it for the VitA).

Until

recently I was using Pro-DHA. But the above ratios are not

maintained with

our fish oils, I will work towards it (my child is 40lbs). We don't

have a

source for GLA- is borage oil a good source? Also, can anyone give

me a

recommendation for VitE? We are using Freeda VitE but I would like

use

something else, hopefully soy-free if possible. Also a source for

L-Carnitine and sources for fish oil with high EPA/DHA ratios will be

helpful.

Any input about the doses and the effects it had on your child, how

soon you

saw something positive or negative and any of your experience will

be of

great interest to me.

Thanks a lot in advance,

Smita