Re: Re: child with recurring symptoms after Heller Myotomy

[Guest guest]

She also mentioned that it is also different for other people, but the food

suggestions are for nutrition purpose too bcoz a lot of achalasian patients

turned to be malnourish.She also suggested to add multi vitamins with minerals

so as her doc. For spasm, they said to try to have a sip of warm water most of

all avoid using any straws to all drinks.Tomorrow she will have her 1st mashed

potato (shd be instant) hot cereals.. She said she can have butter.From a lot

of

studies, they found that moist food is ok like chix, fish as long they are cut

in very small pieces. Avoid eating 4 legged animal (pork and beef).  Like a

baby

starting to teach her how to eat again bcoz next week she will be going back to

her apt and back to school. Before she leaves, i will start making her meal in

small containers and freeze so that she can eat small meals. It is so hard for

me to see my only child suffer. All I do is pray..

________________________________

From: Sandy <sandycarroll@...>

achalasia

Sent: Tue, March 8, 2011 7:32:57 PM

Subject: Re: child with recurring symptoms after Heller Myotomy

 

You mentioned shamrock milkshake and I thought I'd mention that for quite of few

of us achalasians that I've gotten to know, cold dairy things can be icky. Not

sure why. I thought it was just me, but a few others have mentioned it. Although

dieticians make recommendations, for many of us the things that work and the

things that don't are not logical.

Ice cream and milk shakes taste weird to me, it is almost a foamy texture like

the white foam before surgery. Everyone is different, though.

I wouldn't put that much faith in what a dietician says as far as what is easy

to eat. If they are advising about ways to get the right nutrients in, then

fine. Pureed things or finely chopped things are not necessarily any easier.

Adding butter or fat to most anything helps.

Spasms are common after surgery, they taper off usually.

Sandy

>

> From: Malo <grneyegrrl@...>

> Subject: Re: child with recurring symptoms after Heller Myotomy

> achalasia

> Date: Tuesday, March 8, 2011, 8:12 AM

>

>  

>

> He's 11 now. We live in DC. The doc we have is amazing. He's been treated at

> Children's Hospital for the length of this. The dilations have never worked in

> the past. He had a lot of scar tissue that they were never able to break. My

> fear of course is another myotomy. I really just want him to not have to deal

> with this anymore. It breaks my heart to see him like that, and it's

unbearable

>

> to see him after surgery. It's one of those things that as a Mom you can't

make

>

> better, you know?

>

> > From: " Malo " <grneyegrrl@>

>

> > Sent: Tuesday, March 08, 2011 10:43 AM

>

> > <achalasia >

>

> > Subject: child with recurring symptoms after Heller Myotomy

>

> >

>

> > > Hello all-

>

> > >

>

> > > New to the group here and hoping to find some info/support, really

>

> > > anything at this point. Can't find a lot of info on the web.

>

> > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

>

> > > pounds when we found out. We've gone through feeding tubes, supplements,

>

> > > all of that. He had 4 dilations before they determined those weren't

>

> > > working. He finally had a myotomy about 2 years ago.

>

> > > He's been doing GREAT until recently. I've noticed the same things: not

>

> > > eating a lot, frequent trips to the bathroom during meals, rushing for a

>

> > > drink while eating.

>

> > > We go back to the doctor in a week. My question is what's the next option?

>

> > > I read something about an open Heller's Myotomy, which terrifies me.

>

> > > Has anyone else been through this? Any advice would be greatly

>

> > > appreciated!

>

> > >

>

> >

>

>

[Guest guest]

Sandy, thanks for letting me know about spasm after surgery bcoz she is so

worried and thought that it will be away after surgery. I will let her know

that. Pls share more info or anything more about HM after surgery and what have

you think is best to do when having spasms bcoz she is worried on what to do

when she have attacks esp after surgery.. Again thanks for any info..

________________________________

From: Sandy <sandycarroll@...>

achalasia

Sent: Tue, March 8, 2011 7:32:57 PM

Subject: Re: child with recurring symptoms after Heller Myotomy

 

You mentioned shamrock milkshake and I thought I'd mention that for quite of few

of us achalasians that I've gotten to know, cold dairy things can be icky. Not

sure why. I thought it was just me, but a few others have mentioned it. Although

dieticians make recommendations, for many of us the things that work and the

things that don't are not logical.

Ice cream and milk shakes taste weird to me, it is almost a foamy texture like

the white foam before surgery. Everyone is different, though.

I wouldn't put that much faith in what a dietician says as far as what is easy

to eat. If they are advising about ways to get the right nutrients in, then

fine. Pureed things or finely chopped things are not necessarily any easier.

Adding butter or fat to most anything helps.

Spasms are common after surgery, they taper off usually.

Sandy

>

> From: Malo <grneyegrrl@...>

> Subject: Re: child with recurring symptoms after Heller Myotomy

> achalasia

> Date: Tuesday, March 8, 2011, 8:12 AM

>

>  

>

> He's 11 now. We live in DC. The doc we have is amazing. He's been treated at

> Children's Hospital for the length of this. The dilations have never worked in

> the past. He had a lot of scar tissue that they were never able to break. My

> fear of course is another myotomy. I really just want him to not have to deal

> with this anymore. It breaks my heart to see him like that, and it's

unbearable

>

> to see him after surgery. It's one of those things that as a Mom you can't

make

>

> better, you know?

>

> > From: " Malo " <grneyegrrl@>

>

> > Sent: Tuesday, March 08, 2011 10:43 AM

>

> > <achalasia >

>

> > Subject: child with recurring symptoms after Heller Myotomy

>

> >

>

> > > Hello all-

>

> > >

>

> > > New to the group here and hoping to find some info/support, really

>

> > > anything at this point. Can't find a lot of info on the web.

>

> > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

>

> > > pounds when we found out. We've gone through feeding tubes, supplements,

>

> > > all of that. He had 4 dilations before they determined those weren't

>

> > > working. He finally had a myotomy about 2 years ago.

>

> > > He's been doing GREAT until recently. I've noticed the same things: not

>

> > > eating a lot, frequent trips to the bathroom during meals, rushing for a

>

> > > drink while eating.

>

> > > We go back to the doctor in a week. My question is what's the next option?

>

> > > I read something about an open Heller's Myotomy, which terrifies me.

>

> > > Has anyone else been through this? Any advice would be greatly

>

> > > appreciated!

>

> > >

>

> >

>

>

[Guest guest]

Cara wrote:

> ... I REALLY hope this disease is not hereditary - even though we are learning

that there is a genetic cause for it. ...

What is known as primary or idiopathic achalasia, the type most of us

have, is not inherited. This may be picky, but there is not a known

genetic cause for it but perhaps a genetic susceptibility to it. There

are much rarer familial types that are inherited.

notan

[Guest guest]

fe busse wrote:

> ... next week she will be going back to her apt and back to school.

It may be good to give the school a heads up on the possibility of

spasms. If they don't understand what is happening they could cause your

child to needlessly suffer more or needlessly call a ambulance. A spasm

can be as painful as a heart attack and perfectly mimic one. (There is a

reason the LES is called the cardiac sphincter). If she has a spasm with

that much pain they may panic and do something unneeded. On the other

hand, if the pain is bad but they don't believe it they may force her to

sit it out instead of letting her have a drink to stop it. A note to the

office, nurse and the teachers may be wise. Keeping a water bottle on

hand can be a good precaution at this time. Some schools have a problem

with that. Some kids need a snack to stop spasms. Good luck with that in

class. Also, surprisingly some doctors that treat achalasia seem to be

ignorant of how common and painful spasm can be for us. Those that don't

treat achalasia are probably clueless about it. Many heart doctors

understand because they see the achalasia patients that are in the ER

being treated for a supposed heart attack.

notan

[Guest guest]

Thanks so much Nolan, ever since she was diagnosed last January, she told her

professors about her disorder and told them what the symptoms are. They also

know that she will undergo surgery on their springbreak. She was very much ahead

bcoz she don't want to be behind bcoz she is going into her graduate program

therapeutic therapy and classes are only offered every year. she is a little bit

ahead.

I appreciate all you input in this group.Great job, it did help us a lot. Tears

of joy learning from all of you.

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Wed, March 9, 2011 12:52:51 AM

Subject: Re: Re: child with recurring symptoms after Heller Myotomy

 

fe busse wrote:

> ... next week she will be going back to her apt and back to school.

It may be good to give the school a heads up on the possibility of

spasms. If they don't understand what is happening they could cause your

child to needlessly suffer more or needlessly call a ambulance. A spasm

can be as painful as a heart attack and perfectly mimic one. (There is a

reason the LES is called the cardiac sphincter). If she has a spasm with

that much pain they may panic and do something unneeded. On the other

hand, if the pain is bad but they don't believe it they may force her to

sit it out instead of letting her have a drink to stop it. A note to the

office, nurse and the teachers may be wise. Keeping a water bottle on

hand can be a good precaution at this time. Some schools have a problem

with that. Some kids need a snack to stop spasms. Good luck with that in

class. Also, surprisingly some doctors that treat achalasia seem to be

ignorant of how common and painful spasm can be for us. Those that don't

treat achalasia are probably clueless about it. Many heart doctors

understand because they see the achalasia patients that are in the ER

being treated for a supposed heart attack.

notan

[Guest guest]

That reminds me of all the spasms I had before my diagnosis, and for probably 4

years after my myotomy... nobody EVER told me what my spasms were, including the

GI doc I had.  I finally said to him " it feels like my esophagus is in spasm "

and he replied that it was " entirely possible. "  Sadly, I lived in a small city

and I don't think he had much experience with achalasia beyond the textbooks.

 I struggled with the " heart attack " stuff for too long, and then you'd get the

looks from co-workers like you were full of sh*t when it was unbearable pain.

 I still can't get them to stop within any reasonable time either.  I've tried

the advice I've found on here and nothing seems to help for me but time.  

kim in canada

> ... next week she will be going back to her apt and back to school.

It may be good to give the school a heads up on the possibility of

spasms. If they don't understand what is happening they could cause your

child to needlessly suffer more or needlessly call a ambulance. A spasm

can be as painful as a heart attack and perfectly mimic one. (There is a

reason the LES is called the cardiac sphincter). If she has a spasm with

that much pain they may panic and do something unneeded. On the other

hand, if the pain is bad but they don't believe it they may force her to

sit it out instead of letting her have a drink to stop it. A note to the

office, nurse and the teachers may be wise. Keeping a water bottle on

hand can be a good precaution at this time. Some schools have a problem

with that. Some kids need a snack to stop spasms. Good luck with that in

class. Also, surprisingly some doctors that treat achalasia seem to be

ignorant of how common and painful spasm can be for us. Those that don't

treat achalasia are probably clueless about it. Many heart doctors

understand because they see the achalasia patients that are in the ER

being treated for a supposed heart attack.

notan

[Guest guest]

I totally agree with NOTAN..

Make sure she is well versed to stand up to them if they say what she needs

RIGHT NOW. This will be the hardest.  Practice with her about how to respond to

the teacher who says.. wait, go sit down, later or what ever...

 Make sure if it is water, or soda, or hot liquids that is noted and RED

Flagged on her file at the school. You can also help her by getting her a med

alert necklace or bracelet. 

> ... next week she will be going back to her apt and back to school.

It may be good to give the school a heads up on the possibility of

spasms. If they don't understand what is happening they could cause your

child to needlessly suffer more or needlessly call a ambulance. A spasm

can be as painful as a heart attack and perfectly mimic one. (There is a

reason the LES is called the cardiac sphincter). If she has a spasm with

that much pain they may panic and do something unneeded. On the other

hand, if the pain is bad but they don't believe it they may force her to

sit it out instead of letting her have a drink to stop it. A note to the

office, nurse and the teachers may be wise. Keeping a water bottle on

hand can be a good precaution at this time. Some schools have a problem

with that. Some kids need a snack to stop spasms. Good luck with that in

class. Also, surprisingly some doctors that treat achalasia seem to be

ignorant of how common and painful spasm can be for us. Those that don't

treat achalasia are probably clueless about it. Many heart doctors

understand because they see the achalasia patients that are in the ER

being treated for a supposed heart attack.

notan

[Guest guest]

Malo wrote:

> I am looking for info that pertains to the progressive course of treatment as

in if the hm and dilations don't work, what is typically the next course of

action?

Nothing official here. This is just off the top of my head.

notan

Start: 1) have problems

2) get tested

3) if not diagnosed with achalasia,

are you nuts or is it your doctor, return to 1

4) Finally diagnosed with achalasia, others may still

think you are nuts,

chose from plans A, B, C, or D

Plan A: 1) (do nothing)

or (study and learn about achalasia)

or (wait for money, time or insurance)

or (try alt-med)

or (wait for stem cells)

or (wait for replacement esophagus)

or (hope for a miracle)

2) (continue as needed, here on 2 until problems develop)

or (try and convince yourself and others you are

being cured, continue here on 2 until problems prove otherwise)

or (goto either 3 or 4)

3) get more testing

4) if it is not too late (chose from plans A, B, C, or D)

or if it is too late (go directly to plan E do not

pass go)

Plan B: 1) have myotomy, hope it lasts the rest of your life

2) continue here on 2 until

(problems) or (myotomy failure)

3) do EGD or barium

4) (try dilatation or Botox or medications then return to 2)

or (go right to 5 or 6)

5) manometry again and/or possibly other tests

6) (redo myotomy and return to 2)

or (return to 4)

or (go right to 7)

7) (goto plan E)

or (goto plan A)

Plan C: 1) have dilatation, hope it lasts the rest of your life

2) continue here on 2 until

(problems) or (dilatation failure)

or if doing graded dilatation (return to 1 for next grade)

3) do EGD or barium

4) (return to 1)

or (try Botox and return to 2)

or (try medications and return to 2)

or (go right to 5 or 6)

5) manometry again and/or possibly other tests

6) (goto plan A, B, D or E)

or (return to 4)

Plan D: 1) have Botox, be careful telling others,

they already think you are nuts

2) If no results (goto 4)

if it works (hope it lasts, lots of luck with that)

3) symptoms return, of course

4) if still willing to try Botox (return to 1 for another

possibly bigger dose)

or (if not too late, goto to plan A, B, or C)

or (if too late goto plan E)

Plan E: 1) ask self and doctorS, " do I really want or need to be here? "

2) If agreed answer is " no " then try plan A, B, C or D

per doctorS

3) have esophagectomy

4) miss months of life

5) wait for complete recovery and hope not to get stuck

here on 5

and hope you don't skip step 6

6) recovered, you survived, hope to stay here the rest

of your life

or (skip right to 7)

7) problems

8) try (feeding tube)

or (medications)

or (dilatation)

9) if not doing too bad return to 5

10) major failure, bummer

11) Roux-en-Y or other revisional surgery

to modify, replace, bypass or reroute portions of

failed GI organs.

12) return to 4 or 5

[Guest guest]

In one word, Oesophagectomy! Although they maybe reluctant to do the last ditch

resort operation on a child is another thing altogether.

from the UK

From: Malo <grneyegrrl@...>

achalasia

Sent: Wednesday, March 9, 2011 6:37 PM

Subject: Re: child with recurring symptoms after Heller Myotomy

 

I am looking for info that pertains to the progressive course of treatment as in

if the hm and dilations don't work, what is typically the next course of action?

>

> > ... next week she will be going back to her apt and back to school.

>

>

>

> It may be good to give the school a heads up on the possibility of

>

> spasms. If they don't understand what is happening they could cause your

>

> child to needlessly suffer more or needlessly call a ambulance. A spasm

>

> can be as painful as a heart attack and perfectly mimic one. (There is a

>

> reason the LES is called the cardiac sphincter). If she has a spasm with

>

> that much pain they may panic and do something unneeded. On the other

>

> hand, if the pain is bad but they don't believe it they may force her to

>

> sit it out instead of letting her have a drink to stop it. A note to the

>

> office, nurse and the teachers may be wise. Keeping a water bottle on

>

> hand can be a good precaution at this time. Some schools have a problem

>

> with that. Some kids need a snack to stop spasms. Good luck with that in

>

> class. Also, surprisingly some doctors that treat achalasia seem to be

>

> ignorant of how common and painful spasm can be for us. Those that don't

>

> treat achalasia are probably clueless about it. Many heart doctors

>

> understand because they see the achalasia patients that are in the ER

>

> being treated for a supposed heart attack.

>

>

>

> notan

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

What would we Achalasians do without a sense of humour? That's classic, Notan.

> I am looking for info that pertains to the progressive course of treatment as

in if the hm and dilations don't work, what is typically the next course of

action?

Nothing official here. This is just off the top of my head.

notan

Start: 1) have problems

2) get tested

3) if not diagnosed with achalasia,

are you nuts or is it your doctor, return to 1

4) Finally diagnosed with achalasia, others may still

think you are nuts,

chose from plans A, B, C, or D

Plan A: 1) (do nothing)

or (study and learn about achalasia)

or (wait for money, time or insurance)

or (try alt-med)

or (wait for stem cells)

or (wait for replacement esophagus)

or (hope for a miracle)

2) (continue as needed, here on 2 until problems develop)

or (try and convince yourself and others you are

being cured, continue here on 2 until problems prove otherwise)

or (goto either 3 or 4)

3) get more testing

4) if it is not too late (chose from plans A, B, C, or D)

or if it is too late (go directly to plan E do not

pass go)

Plan B: 1) have myotomy, hope it lasts the rest of your life

2) continue here on 2 until

(problems) or (myotomy failure)

3) do EGD or barium

4) (try dilatation or Botox or medications then return to 2)

or (go right to 5 or 6)

5) manometry again and/or possibly other tests

6) (redo myotomy and return to 2)

or (return to 4)

or (go right to 7)

7) (goto plan E)

or (goto plan A)

Plan C: 1) have dilatation, hope it lasts the rest of your life

2) continue here on 2 until

(problems) or (dilatation failure)

or if doing graded dilatation (return to 1 for next grade)

3) do EGD or barium

4) (return to 1)

or (try Botox and return to 2)

or (try medications and return to 2)

or (go right to 5 or 6)

5) manometry again and/or possibly other tests

6) (goto plan A, B, D or E)

or (return to 4)

Plan D: 1) have Botox, be careful telling others,

they already think you are nuts

2) If no results (goto 4)

if it works (hope it lasts, lots of luck with that)

3) symptoms return, of course

4) if still willing to try Botox (return to 1 for another

possibly bigger dose)

or (if not too late, goto to plan A, B, or C)

or (if too late goto plan E)

Plan E: 1) ask self and doctorS, " do I really want or need to be here? "

2) If agreed answer is " no " then try plan A, B, C or D

per doctorS

3) have esophagectomy

4) miss months of life

5) wait for complete recovery and hope not to get stuck

here on 5

and hope you don't skip step 6

6) recovered, you survived, hope to stay here the rest

of your life

or (skip right to 7)

7) problems

8) try (feeding tube)

or (medications)

or (dilatation)

9) if not doing too bad return to 5

10) major failure, bummer

11) Roux-en-Y or other revisional surgery

to modify, replace, bypass or reroute portions of

failed GI organs.

12) return to 4 or 5