Re: Re: Update for (5 yrs old)

[Guest guest]

I was on reglan and glad I non complied. It was recalled

I think. I forgot what damage it causes.

Sent from my iPod

On Apr 13, 2012, at 14:25, " mer " <ray_me_99@...> wrote:

> Get her off reglan, terrible pill!! Outlawed in the US

>

> Canada has a different pill without the side effects. Believe it is

Domperdone, I was on it a long time. Had to order order it from Canada.

>

> http://www.medicinenet.com/domperidone-oral/article.htm

>

> Ray CA OC

>

> http://www.pdrhealth.com/drugs/reglan

>

> about Reglan?

> Reglan may also cause tardive dyskinesia, a syndrome of jerky or writhing

involuntary movements, particularly of the tongue, face, mouth, or jaw. Elderly

people (especially women), those who take more Reglan, and people with diabetes

are at a higher risk for this condition. In children and adults <30 years old,

Reglan may cause involuntary movements of the arms and legs, and sometimes loud

or labored breathing, usually in the first day or two of treatment.

>

> Reglan may cause symptoms similar to those of Parkinson's disease, such as

slow movements, rigidity, tremor, or a mask-like facial appearance.

>

> Reglan may cause intense restlessness with associated symptoms such as

anxiety, agitation, foot-tapping, pacing, inability to sit still, jitteriness,

and insomnia. These symptoms may disappear as your body gets used to Reglan, or

if your dosage is reduced.

>

> Neuroleptic malignant syndrome (NMS, a life threatening brain disorder) may

also occur. Symptoms include high fever, muscle rigidity, altered consciousness,

irregular pulse or blood pressure, irregular or rapid heart beat, and increased

sweating.

>

> Mild to severe depression may occur as well, including thoughts of suicide.

Contact your doctor if any of these occur.

>

> Reglan may also cause fluid retention and volume overload (too much fluid in

the blood).

>

> If stopped abruptly withdrawal symptoms such as dizziness, nervousness, and

headache may occur

>

>

> >

> > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> >

> > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> >

> > She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

> >

> > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> >

> > It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

> >

> > She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

> >

> > Being fairly new to this whole disease, and knowing how recently I had

> > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> >

> > Chris

> > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> >

>

>

[Guest guest]

They have had her on Reglan (metoclopramide) since leaving the hospital in

Dec.

We have not seen any adverse side effects - but I did just read about them.

-Chris

From: achalasia [mailto:achalasia ] On Behalf

Of mer

Sent: Friday, April 13, 2012 12:25 PM

achalasia

Subject: Re: Update for (5 yrs old)

Get her off reglan, terrible pill!! Outlawed in the US

Canada has a different pill without the side effects. Believe it is

Domperdone, I was on it a long time. Had to order order it from Canada.

http://www.medicinenet.com/domperidone-oral/article.htm

Ray CA OC

http://www.pdrhealth.com/drugs/reglan

about Reglan?

Reglan may also cause tardive dyskinesia, a syndrome of jerky or writhing

involuntary movements, particularly of the tongue, face, mouth, or jaw.

Elderly people (especially women), those who take more Reglan, and people

with diabetes are at a higher risk for this condition. In children and

adults <30 years old, Reglan may cause involuntary movements of the arms and

legs, and sometimes loud or labored breathing, usually in the first day or

two of treatment.

Reglan may cause symptoms similar to those of Parkinson's disease, such as

slow movements, rigidity, tremor, or a mask-like facial appearance.

Reglan may cause intense restlessness with associated symptoms such as

anxiety, agitation, foot-tapping, pacing, inability to sit still,

jitteriness, and insomnia. These symptoms may disappear as your body gets

used to Reglan, or if your dosage is reduced.

Neuroleptic malignant syndrome (NMS, a life threatening brain disorder) may

also occur. Symptoms include high fever, muscle rigidity, altered

consciousness, irregular pulse or blood pressure, irregular or rapid heart

beat, and increased sweating.

Mild to severe depression may occur as well, including thoughts of suicide.

Contact your doctor if any of these occur.

Reglan may also cause fluid retention and volume overload (too much fluid in

the blood).

If stopped abruptly withdrawal symptoms such as dizziness, nervousness, and

headache may occur

>

> Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

>

> I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he

knows the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is

good to hopefully get a second opinion on her condition shortly after Dr.

Waldhausen gets her records.

>

> She is doing well with the occasional episodes of throwing up in the

morning which I think after reading most of your posts that it must be spasm

related do to being fed though the G/J tube all night. Though she is not

able to convey exactly what is going on.

>

> Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and

4 year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

>

> It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds

since leaving the hospital nexium, robinul, reglan, senokot, erythromycin,

vitamin D, and iron, which seems to work for her.

>

> She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too

even though we were against it at first because in her case the esophagus

was so enlarged that it cut off the airway and we do not have to deal with

her gasping for air and turning blue anymore.

>

> Being fairly new to this whole disease, and knowing how recently I had

> to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have

to face future surgeries with... has been a very bitter, gigantic pill to

swallow. But thanks to all of you and your daily posts, about your

conditions, recommendations, etc. has helped me tremendously to glean just a

little insight into what she is going though and what she may have to face

in the future.. thank you all again.

>

> Chris

> Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

>

[Guest guest]

Ray wrote:

>

> Hi Chris

>

> ... Try to get her off all the junk they prescribed , especially

> Nexium. ...

>

if your daughter has any acid problems the damage it can do is

much more to worry about than the problems of Nexium (a Proton Pump

Inhibitor, PPI). Someday, someone in this group is going to convince

people into quiting their acid medications and lead them into damaging

their esophagi possibly leading to esophagectomy and or cancer. You

don't want her on anything she doesn't need or more than needed but many

of us need PPIs like Nexium and thank God for them. Watch out for

information against them that misrepresents the FDA warning about them.

Also watch out for people misrepresenting the nature of off-label uses.

Just about all use of medications for achalasia are off-label. No one is

going to do the needed studies to prove an achalasia use to get it on

label when doctors can in their judgment use them off-label anyway.

Watch out for arguments about PPIs as if they stop acid production. They

normally don't unless one is on a higher than normal dose. They just

reduce the acid production so it is less damaging.

Yes, there are concerns about Nexium as there are with most medications,

vitamins and even food. Even things we commonly eat are problems for

some people. PPIs can cause problems but these are mostly issues for

older people or people taking high doses.

Seems unlikely that a PPI is going to be much help before treatment

though. Acid reflux is almost impossible, but not impossible, in

untreated achalasia. I would guess that the PPI at this point is a just

an in case kind of thing. If it doesn't seem to help I would question if

it is really needed in her case. After treatment you may have to revisit

the issue. Know the risks but don't needlessly fear PPIs if needed.

notan

[Guest guest]

We do have a hospital bed that inclines Ray - asked for it at the hospital -

and they provided it, have it set at an angle with pillows.. though she

tends to lie flat in the middle of the night. When she went into the

hospital she was 4 - and weighed 23 pounds... heart wrenching when you start

to see the bones in your daughters back sticking out of the skin and not

really understanding why.

I am going to talk to her GI doc on the 18th and see about having the Reglan

discontinued, or at least changed to the Domperidone.. thank you guys for

the heads up on it.. thought I had checked everything that they were giving

her in the hospital but must have missed looking up Reglan. We just recently

switched from Prilosec to Nexium and I am doubtful they will removed it at

this point. We talked to her Peds Surgeon last week and she has never had a

manometry so I am asking for that to be done next and to see Dr. Walhausen

in Seattle for a second opinion on everything.. would love to see her off

the meds altogether but a little frightened at the same time.

Sorry I did not get back to you with his info earlier.. we had a peds,

hospital, and pharmacy visit today. Her Peds doctor added Zyrtec to her list

of meds today.. as needed due to puffy eyes, dark under them, and occasional

raised bumps she gets by them.

We are seeing an endocrinologist now too.. she ordered a blood test and hand

xray (why we went to the hospital today) to check for GHD (growth hormone

deficiency) and thyroid issues... anyone have anything else to suggest I

have them look for in specific?

Notan - Just FYI in regards to your reply.. I agree. She just recently had

to have all her back molars top and bottom capped because of the acid from

her throwing up rotted them all out... 7 capped 1 pulled because it was too

far gone.. if the acid did that to her teeth imagine what harm it could have

done to the esophagus.. so far they see no scarring, but have done multiple

biopsies when they do see something out of the ordinary. Right now I think I

am ok with the nexium.. but the Reglan I think need to be changed.

Thanks again all for your time and input..

-Chris

From: achalasia [mailto:achalasia ] On Behalf

Of mer

Sent: Friday, April 13, 2012 9:47 PM

achalasia

Subject: Re: Update for (5 yrs old)

Hi Chris

When I hear about children getting Achalasia it makes me very sad. It is

even bad for adults, but we can handle it much better. My youngest daughter

was born with a VSD, hole in the heart, now 49 years. We had it fixed, open

heart surgery at 3 years in LA Children's, we had to wait 3 years to get her

weight up to 20 lbs, she turned blue all the time, so I know how hard it is.

Kids are very special to me!

I am really surprised the doctor put her on reglan, If you Google it you

will find many warnings, it is not approved for children, and even in adults

for short periods only. I am also surprised that you can get it, my GI

asshole tried to put me on it, we could not get it 5 years ago. Then went to

Domperdone from Canada. Once I got off Nexium, I did not need Domperidone.

I assume you have her sleeping on an inclined bed, it would be better if you

had one that inclined/adjustabe. This is one I found, then you might not

need Nexium.

http://www.atlanticbeds.com/s-cape-adjustable-base/i186.aspx?_vsrefdom=googl

eAtlanticBeds

<http://www.atlanticbeds.com/s-cape-adjustable-base/i186.aspx?_vsrefdom=goog

leAtlanticBeds & gdftrk=gdfV21024_a_7c231_a_7c1651_a_7cAB_d_S_d_Cape_d_TLA>

& gdftrk=gdfV21024_a_7c231_a_7c1651_a_7cAB_d_S_d_Cape_d_TLA

Try to get her off all the junk they prescribed , especially Nexium.

I wish you luck treating your daughter, must be a full time job. Wish I

could help.

Ray CA OC

> >

> > Just wanted to say thank you to everyone who wrote us back after we

> initially joined. It helped a lot.

> >

> > I contacted Dr. Pellegrini at the University of Washington and he

> turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not

treat

> kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he

> knows the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which

is

> good to hopefully get a second opinion on her condition shortly after Dr.

> Waldhausen gets her records.

> >

> > She is doing well with the occasional episodes of throwing up in the

> morning which I think after reading most of your posts that it must be

spasm

> related do to being fed though the G/J tube all night. Though she is not

> able to convey exactly what is going on.

> >

> > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1

and

> 4 year old) with Achalasia and has treated them both, which is more than

the

> specialist we currently have.

> >

> > It has been 5 months since her Heller and Dor and she is eating well,

they

> did a endoscopy and the LES is open. She is still on a cocktail of meds

> since leaving the hospital nexium, robinul, reglan, senokot, erythromycin,

> vitamin D, and iron, which seems to work for her.

> >

> > She does eat small portions of just about anything cut up, but her

primary

> food intake is through her G/J tube still. The tracheotomy has helped too

> even though we were against it at first because in her case the esophagus

> was so enlarged that it cut off the airway and we do not have to deal with

> her gasping for air and turning blue anymore.

> >

> > Being fairly new to this whole disease, and knowing how recently I had

> > to learn how to deal with the unknown of a disease that my daughter will

> never fully recover from, but will learn to live with, and may have to

have

> to face future surgeries with... has been a very bitter, gigantic pill to

> swallow. But thanks to all of you and your daily posts, about your

> conditions, recommendations, etc. has helped me tremendously to glean just

a

> little insight into what she is going though and what she may have to face

> in the future.. thank you all again.

> >

> > Chris

> > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

> Tube

> >

>

>

>

>

>

>

[Guest guest]

wrote:

>

> ... She just recently had

> to have all her back molars top and bottom capped because of the acid from

> her throwing up rotted them all out...

>

I had forgotten that she already had treatment, including a myotomy, so

damage from acid reflux is definitely something to watch for. We also

can have acid that is from the food fermenting in the esophagus when it

gets stuck there. It can be strong enough to also cause heartburn and

rot teeth. PPIs will not stop that acid because it is not produced by

the stomach but by microbes in the esophagus. That acid will respond to

antacids such as Tums and Maalox. Acid from either the stomach or

rotting food may also cause some breathing problems to be worse because

the acid and other things from the rotting food irritates airways.

notan

[Guest guest]

Thanks Notan - this is what I suspected that the food fermented in the

esophagus before the surgery which caused the tooth decay.

Before the surgery the LES was entirely closed.. it is now wide open - for

better or worse.

-Chris

From: achalasia [mailto:achalasia ] On Behalf

Of notan ostrich

Sent: Saturday, April 14, 2012 12:16 PM

achalasia

Subject: Re: Re: Update for (5 yrs old)

wrote:

>

> ... She just recently had

> to have all her back molars top and bottom capped because of the acid from

> her throwing up rotted them all out...

>

I had forgotten that she already had treatment, including a myotomy, so

damage from acid reflux is definitely something to watch for. We also

can have acid that is from the food fermenting in the esophagus when it

gets stuck there. It can be strong enough to also cause heartburn and

rot teeth. PPIs will not stop that acid because it is not produced by

the stomach but by microbes in the esophagus. That acid will respond to

antacids such as Tums and Maalox. Acid from either the stomach or

rotting food may also cause some breathing problems to be worse because

the acid and other things from the rotting food irritates airways.

notan

[Guest guest]

It's amazing what you can do with a blender or food processor - even got a

juicer. But I will be honest. I am able to eat some light flaky fish. I have

really never been a good fish cooker though. I am still working on that but also

looking for some lower fat ideas for fish aside from butter. Butter and I have

become great friends but would like to cut it back a tad before that backfires

on me!!!!

 

I work long hours during the week and find that pan frying fish is quicker and

not as dry as when I bake it. I like salmon and cod so far, although my cod

hasn't turned out nearly as good as a restaurant. But I bought some tilapia and

have never had it before.

 

Does anyone have some good, healthy recipes that work for you? I think I got

blenderizing down pat but try to add some fish in from time to time to break up

the monotomy of a mostly carb and slightly pureed diet.

 

Thanks

Kim A

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Friday, April 13, 2012 6:58 AM

Subject: Re: Update for (5 yrs old)

 

glad we've been of use! I can't imagine going through what ya'll have

been. I remember the wave of nausea that hit me, and leg buckling when they

wheeled my five year old in after a tonsillectomy. Happened again with my

second kid twenty years later in ICU. *Nothing* in the world compares to

watching your kiddles hurting.

This is a beginner's list of tubie sites. I'm obviously prejudiced in favor of

the blenderized diet, but you can branch out from these if you're not convinced.

http://blenderizeddiet.net/index.php/pros-a-cons

http://www.foodfortubies.com/

(these two are different versions of the same site)

http://www.facebook.com/pages/Blenderized-Food-For-Tubies/195156907193185

http://youstartwithatube.blogspot.com/

https://www.inspire.com/groups/oley-foundation/discussion/some-hard-hitting-ques\

tions-about-blenderized-diets/

http://www.alsforums.com/forum/tips-tricks-gadgets/8346-blender-recipes-tube-fee\

ding-dos-donts.html

http://psychmamma.wordpress.com/2010/12/28/homemade-blenderized-formula-for-g-tu\

be/

Blenderized-Diet/

Wishing you luck and sending you love,

PS -- My interest in the subject came about when I realized that A. this *could*

be/could have been my own future, and B. in many ways Achalasians ARE de facto

tubies: just internal rather than external tubes. And a somewhat larger

diameter. I stayed alive for three months, whilst waiting for the medical

profession to get its ass in gear, on essentially this diet: thank god for

blenders!!!

>

> Just wanted to say thank you to everyone who wrote us back after we initially

joined. It helped a lot.

>

> I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

>

> She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

>

> Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

>

> It has been 5 months since her Heller and Dor and she is eating well, they did

a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

>

> She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

>

> Being fairly new to this whole disease, and knowing how recently I had

> to learn how to deal with the unknown of a disease that my daughter will never

fully recover from, but will learn to live with, and may have to have to face

future surgeries with... has been a very bitter, gigantic pill to swallow. But

thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

>

> Chris

> Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J Tube

>

[Guest guest]

I used to bake fish putting some

liquid in the baking dish and covering it with foil to keep

it from drying out. You have to monitor so

the liquid does not evaporate and thusly burn

the whole thing.

Good luck!

Sent from my iPod

On Apr 25, 2012, at 20:25, Kim Abrams <xploring37@...> wrote:

> It's amazing what you can do with a blender or food processor - even got a

juicer. But I will be honest. I am able to eat some light flaky fish. I have

really never been a good fish cooker though. I am still working on that but also

looking for some lower fat ideas for fish aside from butter. Butter and I have

become great friends but would like to cut it back a tad before that backfires

on me!!!!

>

> I work long hours during the week and find that pan frying fish is quicker and

not as dry as when I bake it. I like salmon and cod so far, although my cod

hasn't turned out nearly as good as a restaurant. But I bought some tilapia and

have never had it before.

>

> Does anyone have some good, healthy recipes that work for you? I think I got

blenderizing down pat but try to add some fish in from time to time to break up

the monotomy of a mostly carb and slightly pureed diet.

>

> Thanks

> Kim A

>

>

> ________________________________

> From: puddleriver13 <puddleriver13@...>

> achalasia

> Sent: Friday, April 13, 2012 6:58 AM

> Subject: Re: Update for (5 yrs old)

>

>

>

>

> glad we've been of use! I can't imagine going through what ya'll have

been. I remember the wave of nausea that hit me, and leg buckling when they

wheeled my five year old in after a tonsillectomy. Happened again with my second

kid twenty years later in ICU. *Nothing* in the world compares to watching your

kiddles hurting.

>

> This is a beginner's list of tubie sites. I'm obviously prejudiced in favor of

the blenderized diet, but you can branch out from these if you're not convinced.

>

> http://blenderizeddiet.net/index.php/pros-a-cons

> http://www.foodfortubies.com/

> (these two are different versions of the same site)

>

> http://www.facebook.com/pages/Blenderized-Food-For-Tubies/195156907193185

>

> http://youstartwithatube.blogspot.com/

>

>

https://www.inspire.com/groups/oley-foundation/discussion/some-hard-hitting-ques\

tions-about-blenderized-diets/

>

>

http://www.alsforums.com/forum/tips-tricks-gadgets/8346-blender-recipes-tube-fee\

ding-dos-donts.html

>

>

http://psychmamma.wordpress.com/2010/12/28/homemade-blenderized-formula-for-g-tu\

be/

>

> Blenderized-Diet/

>

> Wishing you luck and sending you love,

>

> PS -- My interest in the subject came about when I realized that A. this

*could* be/could have been my own future, and B. in many ways Achalasians ARE de

facto tubies: just internal rather than external tubes. And a somewhat larger

diameter. I stayed alive for three months, whilst waiting for the medical

profession to get its ass in gear, on essentially this diet: thank god for

blenders!!!

>

>

> >

> > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> >

> > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> >

> > She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

> >

> > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> >

> > It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

> >

> > She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

> >

> > Being fairly new to this whole disease, and knowing how recently I had

> > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> >

> > Chris

> > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> >

>

>

[Guest guest]

Try chicken.  Blend it finer than chicken salad.  You can add mayo or cream of

chicken or any cream soup to help the chicken or any blended meat go down

easier.

 

Suzanne

From: Kim Abrams <xploring37@...>

Subject: Re: Re: Update for (5 yrs old)

" achalasia " <achalasia >

Date: Wednesday, April 25, 2012, 9:25 PM

 

It's amazing what you can do with a blender or food processor - even got a

juicer. But I will be honest. I am able to eat some light flaky fish. I have

really never been a good fish cooker though. I am still working on that but also

looking for some lower fat ideas for fish aside from butter. Butter and I have

become great friends but would like to cut it back a tad before that backfires

on me!!!!

 

I work long hours during the week and find that pan frying fish is quicker and

not as dry as when I bake it. I like salmon and cod so far, although my cod

hasn't turned out nearly as good as a restaurant. But I bought some tilapia and

have never had it before.

 

Does anyone have some good, healthy recipes that work for you? I think I got

blenderizing down pat but try to add some fish in from time to time to break up

the monotomy of a mostly carb and slightly pureed diet.

 

Thanks

Kim A

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Friday, April 13, 2012 6:58 AM

Subject: Re: Update for (5 yrs old)

 

glad we've been of use! I can't imagine going through what ya'll have

been. I remember the wave of nausea that hit me, and leg buckling when they

wheeled my five year old in after a tonsillectomy. Happened again with my second

kid twenty years later in ICU. *Nothing* in the world compares to watching your

kiddles hurting.

This is a beginner's list of tubie sites. I'm obviously prejudiced in favor of

the blenderized diet, but you can branch out from these if you're not convinced.

http://blenderizeddiet.net/index.php/pros-a-cons

http://www.foodfortubies.com/

(these two are different versions of the same site)

http://www.facebook.com/pages/Blenderized-Food-For-Tubies/195156907193185

http://youstartwithatube.blogspot.com/

https://www.inspire.com/groups/oley-foundation/discussion/some-hard-hitting-ques\

tions-about-blenderized-diets/

http://www.alsforums.com/forum/tips-tricks-gadgets/8346-blender-recipes-tube-fee\

ding-dos-donts.html

http://psychmamma.wordpress.com/2010/12/28/homemade-blenderized-formula-for-g-tu\

be/

Blenderized-Diet/

Wishing you luck and sending you love,

PS -- My interest in the subject came about when I realized that A. this *could*

be/could have been my own future, and B. in many ways Achalasians ARE de facto

tubies: just internal rather than external tubes. And a somewhat larger

diameter. I stayed alive for three months, whilst waiting for the medical

profession to get its ass in gear, on essentially this diet: thank god for

blenders!!!

>

> Just wanted to say thank you to everyone who wrote us back after we initially

joined. It helped a lot.

>

> I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

>

> She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

>

> Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

>

> It has been 5 months since her Heller and Dor and she is eating well, they did

a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

>

> She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

>

> Being fairly new to this whole disease, and knowing how recently I had

> to learn how to deal with the unknown of a disease that my daughter will never

fully recover from, but will learn to live with, and may have to have to face

future surgeries with... has been a very bitter, gigantic pill to swallow. But

thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

>

> Chris

> Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J Tube

>

[Guest guest]

8 days ofter HM cream of (any kind) soups are my friends.  You would be

surprised how many dishes you can make.

 

Suzanne

From: mer <ray_me_99@...>

Subject: Re: Update for (5 yrs old)

achalasia

Date: Thursday, April 26, 2012, 2:52 PM

 

Butter and I have become great friends -Kim

Yes I believe real butter has been my friend for the last two years, and I eat a

lot with my meals. I was worried about the cholesterol so have had it checked

quite often. My recent LDL was 93 which is great.

After all we can not eat steaks or hamburgers or other fatty foods, so butter is

great to replace the bad things. And I had a heart bypass 15 years ago.

As has been presented earlier, fat or butter opens the LES and makes the food

slip down much better.Combine it with Magnesium. If fat or butter caused

indigestion, like with GERD, you should be carefull. Have it earlier in the day

and be vertically active.

Ray CA OC

> >

> > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> >

> > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> >

> > She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

> >

> > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> >

> > It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

> >

> > She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

> >

> > Being fairly new to this whole disease, and knowing how recently I had

> > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> >

> > Chris

> > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> >

>

>

>

>

>

[Guest guest]

Just saw him last week - he has decreased the dose to 1.5 ml from 3 ml every

8 hours. we see him next month and hopefully he takes he off altogether.

-Chris

From: achalasia [mailto:achalasia ] On Behalf

Of nailheader

Sent: Friday, April 27, 2012 6:42 PM

achalasia

Subject: Re: Update for (5 yrs old)

Agree.

Reglan has all those dangerous side-effects - especially tardive dyskinesia.

Your doctor will push these ineffective, but risky meds because their

prescription won't subject them to the same regulatory and criminal

sanctions inherent with controlled substances and the DEA's War on Doctors.

Steve

> >

> > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> >

> > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he

knows the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is

good to hopefully get a second opinion on her condition shortly after Dr.

Waldhausen gets her records.

> >

> > She is doing well with the occasional episodes of throwing up in the

morning which I think after reading most of your posts that it must be spasm

related do to being fed though the G/J tube all night. Though she is not

able to convey exactly what is going on.

> >

> > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1

and 4 year old) with Achalasia and has treated them both, which is more than

the specialist we currently have.

> >

> > It has been 5 months since her Heller and Dor and she is eating well,

they did a endoscopy and the LES is open. She is still on a cocktail of meds

since leaving the hospital nexium, robinul, reglan, senokot, erythromycin,

vitamin D, and iron, which seems to work for her.

> >

> > She does eat small portions of just about anything cut up, but her

primary food intake is through her G/J tube still. The tracheotomy has

helped too even though we were against it at first because in her case the

esophagus was so enlarged that it cut off the airway and we do not have to

deal with her gasping for air and turning blue anymore.

> >

> > Being fairly new to this whole disease, and knowing how recently I had

> > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have

to face future surgeries with... has been a very bitter, gigantic pill to

swallow. But thanks to all of you and your daily posts, about your

conditions, recommendations, etc. has helped me tremendously to glean just a

little insight into what she is going though and what she may have to face

in the future.. thank you all again.

> >

> > Chris

> > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> >

>

[Guest guest]

I will definitely try that!

Thanks

________________________________

From: Faith Weiss <weissf@...>

" achalasia " <achalasia >

Sent: Wednesday, April 25, 2012 8:05 PM

Subject: Re: Re: Update for (5 yrs old)

 

I used to bake fish putting some

liquid in the baking dish and covering it with foil to keep

it from drying out. You have to monitor so

the liquid does not evaporate and thusly burn

the whole thing.

Good luck!

Sent from my iPod

On Apr 25, 2012, at 20:25, Kim Abrams <xploring37@...> wrote:

> It's amazing what you can do with a blender or food processor - even got a

juicer. But I will be honest. I am able to eat some light flaky fish. I have

really never been a good fish cooker though. I am still working on that but also

looking for some lower fat ideas for fish aside from butter. Butter and I have

become great friends but would like to cut it back a tad before that backfires

on me!!!!

>

> I work long hours during the week and find that pan frying fish is quicker and

not as dry as when I bake it. I like salmon and cod so far, although my cod

hasn't turned out nearly as good as a restaurant. But I bought some tilapia and

have never had it before.

>

> Does anyone have some good, healthy recipes that work for you? I think I got

blenderizing down pat but try to add some fish in from time to time to break up

the monotomy of a mostly carb and slightly pureed diet.

>

> Thanks

> Kim A

>

>

> ________________________________

> From: puddleriver13 <puddleriver13@...>

> achalasia

> Sent: Friday, April 13, 2012 6:58 AM

> Subject: Re: Update for (5 yrs old)

>

>

>

>

> glad we've been of use! I can't imagine going through what ya'll have

been. I remember the wave of nausea that hit me, and leg buckling when they

wheeled my five year old in after a tonsillectomy. Happened again with my second

kid twenty years later in ICU. *Nothing* in the world compares to watching your

kiddles hurting.

>

> This is a beginner's list of tubie sites. I'm obviously prejudiced in favor of

the blenderized diet, but you can branch out from these if you're not convinced.

>

> http://blenderizeddiet.net/index.php/pros-a-cons

> http://www.foodfortubies.com/

> (these two are different versions of the same site)

>

> http://www.facebook.com/pages/Blenderized-Food-For-Tubies/195156907193185

>

> http://youstartwithatube.blogspot.com/

>

>

https://www.inspire.com/groups/oley-foundation/discussion/some-hard-hitting-ques\

tions-about-blenderized-diets/

>

>

http://www.alsforums.com/forum/tips-tricks-gadgets/8346-blender-recipes-tube-fee\

ding-dos-donts.html

>

>

http://psychmamma.wordpress.com/2010/12/28/homemade-blenderized-formula-for-g-tu\

be/

>

> Blenderized-Diet/

>

> Wishing you luck and sending you love,

>

> PS -- My interest in the subject came about when I realized that A. this

*could* be/could have been my own future, and B. in many ways Achalasians ARE de

facto tubies: just internal rather than external tubes. And a somewhat larger

diameter. I stayed alive for three months, whilst waiting for the medical

profession to get its ass in gear, on essentially this diet: thank god for

blenders!!!

>

>

> >

> > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> >

> > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> >

> > She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

> >

> > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> >

> > It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

> >

> > She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

> >

> > Being fairly new to this whole disease, and knowing how recently I had

> > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> >

> > Chris

> > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> >

>

>

[Guest guest]

I usually cook a whole chicken and then shred it and make different meals with

it.

________________________________

From: Suzanne Lee <suzannel130@...>

achalasia

Sent: Thursday, April 26, 2012 3:15 AM

Subject: Re: Re: Update for (5 yrs old)

 

Try chicken.  Blend it finer than chicken salad.  You can add mayo or cream of

chicken or any cream soup to help the chicken or any blended meat go down

easier.

 

Suzanne

From: Kim Abrams <xploring37@...>

Subject: Re: Re: Update for (5 yrs old)

" achalasia " <achalasia >

Date: Wednesday, April 25, 2012, 9:25 PM

 

It's amazing what you can do with a blender or food processor - even got a

juicer. But I will be honest. I am able to eat some light flaky fish. I have

really never been a good fish cooker though. I am still working on that but also

looking for some lower fat ideas for fish aside from butter. Butter and I have

become great friends but would like to cut it back a tad before that backfires

on me!!!!

 

I work long hours during the week and find that pan frying fish is quicker and

not as dry as when I bake it. I like salmon and cod so far, although my cod

hasn't turned out nearly as good as a restaurant. But I bought some tilapia and

have never had it before.

 

Does anyone have some good, healthy recipes that work for you? I think I got

blenderizing down pat but try to add some fish in from time to time to break up

the monotomy of a mostly carb and slightly pureed diet.

 

Thanks

Kim A

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Friday, April 13, 2012 6:58 AM

Subject: Re: Update for (5 yrs old)

 

glad we've been of use! I can't imagine going through what ya'll have

been. I remember the wave of nausea that hit me, and leg buckling when they

wheeled my five year old in after a tonsillectomy. Happened again with my second

kid twenty years later in ICU. *Nothing* in the world compares to watching your

kiddles hurting.

This is a beginner's list of tubie sites. I'm obviously prejudiced in favor of

the blenderized diet, but you can branch out from these if you're not convinced.

http://blenderizeddiet.net/index.php/pros-a-cons

http://www.foodfortubies.com/

(these two are different versions of the same site)

http://www.facebook.com/pages/Blenderized-Food-For-Tubies/195156907193185

http://youstartwithatube.blogspot.com/

https://www.inspire.com/groups/oley-foundation/discussion/some-hard-hitting-ques\

tions-about-blenderized-diets/

http://www.alsforums.com/forum/tips-tricks-gadgets/8346-blender-recipes-tube-fee\

ding-dos-donts.html

http://psychmamma.wordpress.com/2010/12/28/homemade-blenderized-formula-for-g-tu\

be/

Blenderized-Diet/

Wishing you luck and sending you love,

PS -- My interest in the subject came about when I realized that A. this *could*

be/could have been my own future, and B. in many ways Achalasians ARE de facto

tubies: just internal rather than external tubes. And a somewhat larger

diameter. I stayed alive for three months, whilst waiting for the medical

profession to get its ass in gear, on essentially this diet: thank god for

blenders!!!

>

> Just wanted to say thank you to everyone who wrote us back after we initially

joined. It helped a lot.

>

> I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

>

> She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

>

> Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

>

> It has been 5 months since her Heller and Dor and she is eating well, they did

a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

>

> She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

>

> Being fairly new to this whole disease, and knowing how recently I had

> to learn how to deal with the unknown of a disease that my daughter will never

fully recover from, but will learn to live with, and may have to have to face

future surgeries with... has been a very bitter, gigantic pill to swallow. But

thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

>

> Chris

> Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J Tube

>

[Guest guest]

Ray,

 

I am definitely trying to add more Magnesium. I am taking 2 - 250 mg tablets a

day right now. Since I have been eating a lot of carbs, I am worried about

gaining weight from just fat. I find it difficult at times to stay on a healthy

diet. Butter and other fattenign, artery clogging things help food pass but like

I said before, I don't want good numbers to change to bad!

 

Kim A

________________________________

From: mer <ray_me_99@...>

achalasia

Sent: Thursday, April 26, 2012 12:52 PM

Subject: Re: Update for (5 yrs old)

 

Butter and I have become great friends -Kim

Yes I believe real butter has been my friend for the last two years, and I eat a

lot with my meals. I was worried about the cholesterol so have had it checked

quite often. My recent LDL was 93 which is great.

After all we can not eat steaks or hamburgers or other fatty foods, so butter is

great to replace the bad things. And I had a heart bypass 15 years ago.

As has been presented earlier, fat or butter opens the LES and makes the food

slip down much better.Combine it with Magnesium. If fat or butter caused

indigestion, like with GERD, you should be carefull. Have it earlier in the day

and be vertically active.

Ray CA OC

> >

> > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> >

> > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> >

> > She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

> >

> > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> >

> > It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

> >

> > She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

> >

> > Being fairly new to this whole disease, and knowing how recently I had

> > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> >

> > Chris

> > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> >

>

>

>

>

>

[Guest guest]

Soups are a main staple to my diet as well!!

________________________________

From: Suzanne Lee <suzannel130@...>

achalasia

Sent: Thursday, April 26, 2012 5:57 PM

Subject: Re: Re: Update for (5 yrs old)

 

8 days ofter HM cream of (any kind) soups are my friends.  You would be

surprised how many dishes you can make.

 

Suzanne

From: mer <ray_me_99@...>

Subject: Re: Update for (5 yrs old)

achalasia

Date: Thursday, April 26, 2012, 2:52 PM

 

Butter and I have become great friends -Kim

Yes I believe real butter has been my friend for the last two years, and I eat a

lot with my meals. I was worried about the cholesterol so have had it checked

quite often. My recent LDL was 93 which is great.

After all we can not eat steaks or hamburgers or other fatty foods, so butter is

great to replace the bad things. And I had a heart bypass 15 years ago.

As has been presented earlier, fat or butter opens the LES and makes the food

slip down much better.Combine it with Magnesium. If fat or butter caused

indigestion, like with GERD, you should be carefull. Have it earlier in the day

and be vertically active.

Ray CA OC

> >

> > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> >

> > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> >

> > She is doing well with the occasional episodes of throwing up in the morning

which I think after reading most of your posts that it must be spasm related do

to being fed though the G/J tube all night. Though she is not able to convey

exactly what is going on.

> >

> > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4

year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> >

> > It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

> >

> > She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

> >

> > Being fairly new to this whole disease, and knowing how recently I had

> > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> >

> > Chris

> > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> >

>

>

>

>

>

[Guest guest]

Try " Calm. " . It's a powdered magnesium that

you can mix with water.

Faith

Sent from my iPod

On May 4, 2012, at 20:41, Kim Abrams <xploring37@...> wrote:

> Ray,

>

> I am definitely trying to add more Magnesium. I am taking 2 - 250 mg tablets a

day right now. Since I have been eating a lot of carbs, I am worried about

gaining weight from just fat. I find it difficult at times to stay on a healthy

diet. Butter and other fattenign, artery clogging things help food pass but like

I said before, I don't want good numbers to change to bad!

>

> Kim A

>

>

> ________________________________

> From: mer <ray_me_99@...>

> achalasia

> Sent: Thursday, April 26, 2012 12:52 PM

> Subject: Re: Update for (5 yrs old)

>

>

>

>

> Butter and I have become great friends -Kim

>

> Yes I believe real butter has been my friend for the last two years, and I eat

a lot with my meals. I was worried about the cholesterol so have had it checked

quite often. My recent LDL was 93 which is great.

>

> After all we can not eat steaks or hamburgers or other fatty foods, so butter

is great to replace the bad things. And I had a heart bypass 15 years ago.

>

> As has been presented earlier, fat or butter opens the LES and makes the food

slip down much better.Combine it with Magnesium. If fat or butter caused

indigestion, like with GERD, you should be carefull. Have it earlier in the day

and be vertically active.

>

> Ray CA OC

>

>

> > >

> > > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> > >

> > > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> > >

> > > She is doing well with the occasional episodes of throwing up in the

morning which I think after reading most of your posts that it must be spasm

related do to being fed though the G/J tube all night. Though she is not able to

convey exactly what is going on.

> > >

> > > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and

4 year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> > >

> > > It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

> > >

> > > She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

> > >

> > > Being fairly new to this whole disease, and knowing how recently I had

> > > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> > >

> > > Chris

> > > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> > >

> >

> >

> >

> >

> >

[Guest guest]

Where do you buy that at?

________________________________

From: Faith Weiss <weissf@...>

" achalasia " <achalasia >

Sent: Friday, May 4, 2012 7:51 PM

Subject: Re: Re: Update for (5 yrs old)

 

Try " Calm. " . It's a powdered magnesium that

you can mix with water.

Faith

Sent from my iPod

On May 4, 2012, at 20:41, Kim Abrams <xploring37@...> wrote:

> Ray,

>

> I am definitely trying to add more Magnesium. I am taking 2 - 250 mg tablets a

day right now. Since I have been eating a lot of carbs, I am worried about

gaining weight from just fat. I find it difficult at times to stay on a healthy

diet. Butter and other fattenign, artery clogging things help food pass but like

I said before, I don't want good numbers to change to bad!

>

> Kim A

>

>

> ________________________________

> From: mer <ray_me_99@...>

> achalasia

> Sent: Thursday, April 26, 2012 12:52 PM

> Subject: Re: Update for (5 yrs old)

>

>

>

>

> Butter and I have become great friends -Kim

>

> Yes I believe real butter has been my friend for the last two years, and I eat

a lot with my meals. I was worried about the cholesterol so have had it checked

quite often. My recent LDL was 93 which is great.

>

> After all we can not eat steaks or hamburgers or other fatty foods, so butter

is great to replace the bad things. And I had a heart bypass 15 years ago.

>

> As has been presented earlier, fat or butter opens the LES and makes the food

slip down much better.Combine it with Magnesium. If fat or butter caused

indigestion, like with GERD, you should be carefull. Have it earlier in the day

and be vertically active.

>

> Ray CA OC

>

>

> > >

> > > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> > >

> > > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> > >

> > > She is doing well with the occasional episodes of throwing up in the

morning which I think after reading most of your posts that it must be spasm

related do to being fed though the G/J tube all night. Though she is not able to

convey exactly what is going on.

> > >

> > > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and

4 year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> > >

> > > It has been 5 months since her Heller and Dor and she is eating well, they

did a endoscopy and the LES is open. She is still on a cocktail of meds since

leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D,

and iron, which seems to work for her.

> > >

> > > She does eat small portions of just about anything cut up, but her primary

food intake is through her G/J tube still. The tracheotomy has helped too even

though we were against it at first because in her case the esophagus was so

enlarged that it cut off the airway and we do not have to deal with her gasping

for air and turning blue anymore.

> > >

> > > Being fairly new to this whole disease, and knowing how recently I had

> > > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> > >

> > > Chris

> > > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> > >

> >

> >

> >

> >

> >

[Guest guest]

I buy it at he local co-op. whole goods also

carries it. It's distributed by gillham's natural

vitality in Austin, tx.

Sent from my iPod

On May 7, 2012, at 20:26, Kim Abrams <xploring37@...> wrote:

> Where do you buy that at?

>

> ________________________________

> From: Faith Weiss <weissf@...>

> " achalasia " <achalasia >

> Sent: Friday, May 4, 2012 7:51 PM

> Subject: Re: Re: Update for (5 yrs old)

>

>

>

>

> Try " Calm. " . It's a powdered magnesium that

> you can mix with water.

>

> Faith

>

> Sent from my iPod

>

> On May 4, 2012, at 20:41, Kim Abrams <xploring37@...> wrote:

>

> > Ray,

> >

> > I am definitely trying to add more Magnesium. I am taking 2 - 250 mg tablets

a day right now. Since I have been eating a lot of carbs, I am worried about

gaining weight from just fat. I find it difficult at times to stay on a healthy

diet. Butter and other fattenign, artery clogging things help food pass but like

I said before, I don't want good numbers to change to bad!

> >

> > Kim A

> >

> >

> > ________________________________

> > From: mer <ray_me_99@...>

> > achalasia

> > Sent: Thursday, April 26, 2012 12:52 PM

> > Subject: Re: Update for (5 yrs old)

> >

> >

> >

> >

> > Butter and I have become great friends -Kim

> >

> > Yes I believe real butter has been my friend for the last two years, and I

eat a lot with my meals. I was worried about the cholesterol so have had it

checked quite often. My recent LDL was 93 which is great.

> >

> > After all we can not eat steaks or hamburgers or other fatty foods, so

butter is great to replace the bad things. And I had a heart bypass 15 years

ago.

> >

> > As has been presented earlier, fat or butter opens the LES and makes the

food slip down much better.Combine it with Magnesium. If fat or butter caused

indigestion, like with GERD, you should be carefull. Have it earlier in the day

and be vertically active.

> >

> > Ray CA OC

> >

> >

> > > >

> > > > Just wanted to say thank you to everyone who wrote us back after we

initially joined. It helped a lot.

> > > >

> > > > I contacted Dr. Pellegrini at the University of Washington and he

turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat

kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows

the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to

hopefully get a second opinion on her condition shortly after Dr. Waldhausen

gets her records.

> > > >

> > > > She is doing well with the occasional episodes of throwing up in the

morning which I think after reading most of your posts that it must be spasm

related do to being fed though the G/J tube all night. Though she is not able to

convey exactly what is going on.

> > > >

> > > > Dr. Pellegrini said he has seen 2 cases of children in his career (a 1

and 4 year old) with Achalasia and has treated them both, which is more than the

specialist we currently have.

> > > >

> > > > It has been 5 months since her Heller and Dor and she is eating well,

they did a endoscopy and the LES is open. She is still on a cocktail of meds

since leaving the hospital nexium, robinul, reglan, senokot, erythromycin,

vitamin D, and iron, which seems to work for her.

> > > >

> > > > She does eat small portions of just about anything cut up, but her

primary food intake is through her G/J tube still. The tracheotomy has helped

too even though we were against it at first because in her case the esophagus

was so enlarged that it cut off the airway and we do not have to deal with her

gasping for air and turning blue anymore.

> > > >

> > > > Being fairly new to this whole disease, and knowing how recently I had

> > > > to learn how to deal with the unknown of a disease that my daughter will

never fully recover from, but will learn to live with, and may have to have to

face future surgeries with... has been a very bitter, gigantic pill to swallow.

But thanks to all of you and your daily posts, about your conditions,

recommendations, etc. has helped me tremendously to glean just a little insight

into what she is going though and what she may have to face in the future..

thank you all again.

> > > >

> > > > Chris

> > > > Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J

Tube

> > > >

> > >

> > >

> > >

> > >

> > >