Re: Update for (5 yrs old)

[Guest guest]

This is wonderful news Chris... I know you still have a long road ahead.. but...

forward motion is good!

Keep reading and keep talking..

Read some of the article on reflux.org  These articles are helpful too.

Please take a moment and post all the doctor info on the data page for other

parents.  We have some new ones just coming on board and looking for help!

Bless you..

Carolyn

mom of Cameron

myo'd and fundo'd in 05

 

________________________________

________________________________

From: Pahrump2009 <vizionx@...>

achalasia

Sent: Thursday, April 12, 2012 11:53 PM

Subject: Update for (5 yrs old)

 

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]

can you post Dr. Waldhausens info for me.. also did you get his email?

thanks

Carolyn

mom of Cameron

myo'd and fundo'd 05

>

> ________________________________

> From: Pahrump2009 <vizionx@...>

> achalasia

> Sent: Thursday, April 12, 2012 11:53 PM

> Subject: Update for (5 yrs old)

>

>

>  

> 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]

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]

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]

What data page?

Sent from my iPod

On Apr 13, 2012, at 2:44, Carolyn <wooleeacre@...> wrote:

> This is wonderful news Chris... I know you still have a long road ahead..

but... forward motion is good!

>

> Keep reading and keep talking..

>

> Read some of the article on reflux.org These articles are helpful too.

>

> Please take a moment and post all the doctor info on the data page for other

parents. We have some new ones just coming on board and looking for help!

>

> Bless you..

>

> Carolyn

>

> mom of Cameron

>

> myo'd and fundo'd in 05

>

>

>

> ________________________________

>

> ________________________________

> From: Pahrump2009 <vizionx@...>

> achalasia

> Sent: Thursday, April 12, 2012 11:53 PM

> Subject: Update for (5 yrs old)

>

>

>

> 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]

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=googleAtl\

anticBeds & 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]

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]

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

> >

>