Re: Future for Daughter with Achalasia

[Guest guest]

Hi,

my son is now 20 years old!  He was diagnosed on his 14th birthday and had his

Myo and Fundo that following  May.. yep 6 years ago this month. We had one

small stretch a couple years ago, had a period of some spasms. But other than

that he has had a pretty good quality of life!  There is hope, there is always

hope and help here...

Share some more with us! 

you do not say where you are located or who the previous doctor was..

share some more and we can help you a little further in your search..

thanks  for sharing..

Carolyn

From: chinlover77 <christy@...>

Subject: Future for Daughter with Achalasia

achalasia

Date: Wednesday, May 4, 2011, 1:45 PM

 

My daughter who is now 17 has had A since when was 5y/o. She had her HM w/

PF at the age of 8. She has since then had a very bad time with chest spasms and

dumping syndrome. She is now lactose intolerant as well. For the first few years

we had her to the Ped. GI regularly to try and stop the spasms and to have her

esophagus stretched so food would go down easier. The Ped. GI here did not seem

to know a lot about kids with this condition. They really didn't want to deal

with it I don't think. They even told us that they had done all they could for

her and that we were just going to have to live with it the way it was.

So for the last 5 years or so we have done just that. We have lived with it and

coped the best way that we can. Our hope was that when she turns 18 we woulld be

able to take her to an adult GI who would be more familiar with A and would have

some other options. No adult GIs would touch her until she is 18. We are almost

there. She will be 18 in October.

I guess what I am leading up to is...what can we expect when we do see an adult

GI? What have other adults w/ A had success with? We have kind of been hoping

that medical science would have improved to the point that we would have some

new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

[Guest guest]

You didn't say where you are located. In general most of us in this group agree

that earlier treatment is better than waiting. It seems like if the esophagus

stretches out, any treatment is less likely to work. Wherever you are, find the

largest teaching medical center and go to the head of the gastro and either

minimally invasive or thoracic surgeons. There are probably only about 10 major

centers that most of us have had the best success. It is a matter of experience

in treating those of us with achalasia.

Julee, in So Cal suffered for over 20 years, and had surgery about 6 months ago

and is doing well. But for most of us the longer we wait the more the esophagus

stretches. If the first time wasn't so successful, then a dialation might help

or even another surgery.

For me, the spasms got much worse before treatment. I still get them. For many

of us depression comes with achalasia. It seems like taking a mild

antidepressant also helps with spasms, so that is something you might look into.

There is some issue with anxiety maybe triggering spasms and some

antidepressants have some anti anxiety benefits.

There are some other young people here and there are a few facebook pages also

you and your daughter might find helpful. for me, I don't really want my

comments about achalasia showing up on facebook, but for others maybe it is

helpful

This group is pretty hard to find on the internet so although it is public,

really who would want to read about us??

Good luck, there are a lot of Moms and some young kids here, maybe meet up with

someone and you will find a great source of comfort.

Sandy in So Cal.

>

> My daughter who is now 17 has had A since when was 5y/o. She had her HM w/ PF

at the age of 8. She has since then had a very bad time with chest spasms and

dumping syndrome. She is now lactose intolerant as well. For the first few years

we had her to the Ped. GI regularly to try and stop the spasms and to have her

esophagus stretched so food would go down easier. The Ped. GI here did not seem

to know a lot about kids with this condition. They really didn't want to deal

with it I don't think. They even told us that they had done all they could for

her and that we were just going to have to live with it the way it was.

>

> So for the last 5 years or so we have done just that. We have lived with it

and coped the best way that we can. Our hope was that when she turns 18 we

woulld be able to take her to an adult GI who would be more familiar with A and

would have some other options. No adult GIs would touch her until she is 18. We

are almost there. She will be 18 in October.

>

> I guess what I am leading up to is...what can we expect when we do see an

adult GI? What have other adults w/ A had success with? We have kind of been

hoping that medical science would have improved to the point that we would have

some new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

>

[Guest guest]

We are located in Phoenix, AZ.

This has been a bad week for my dd she has had these spasms everyday for the

last six days. She is getting tired and I am getting frustrated. This is how it

goes though. She will have them in clusters and then she wont have any for a

month or so. When she is having them they are really bad. I should invest in

Tylenol PM. LOL

> >

> > My daughter who is now 17 has had A since when was 5y/o. She had her HM w/

PF at the age of 8. She has since then had a very bad time with chest spasms and

dumping syndrome. She is now lactose intolerant as well. For the first few years

we had her to the Ped. GI regularly to try and stop the spasms and to have her

esophagus stretched so food would go down easier. The Ped. GI here did not seem

to know a lot about kids with this condition. They really didn't want to deal

with it I don't think. They even told us that they had done all they could for

her and that we were just going to have to live with it the way it was.

> >

> > So for the last 5 years or so we have done just that. We have lived with it

and coped the best way that we can. Our hope was that when she turns 18 we

woulld be able to take her to an adult GI who would be more familiar with A and

would have some other options. No adult GIs would touch her until she is 18. We

are almost there. She will be 18 in October.

> >

> > I guess what I am leading up to is...what can we expect when we do see an

adult GI? What have other adults w/ A had success with? We have kind of been

hoping that medical science would have improved to the point that we would have

some new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

> >

>

[Guest guest]

Christy - many, many of us have found relief with mild anti-depressants - she is

old enough now she should be able to take one. My spasms never went away

entirely with them but they were easier and far less frequent. I know of several

members who have no spasms at all anymore while on them. Ask her GI about low

level seratonin reuptake drugs (amitryptaline and that type). They may help a

great deal.

Good luck and please keep us posted!

~ in NC

> > >

> > > My daughter who is now 17 has had A since when was 5y/o. She had her HM w/

PF at the age of 8. She has since then had a very bad time with chest spasms and

dumping syndrome. She is now lactose intolerant as well. For the first few years

we had her to the Ped. GI regularly to try and stop the spasms and to have her

esophagus stretched so food would go down easier. The Ped. GI here did not seem

to know a lot about kids with this condition. They really didn't want to deal

with it I don't think. They even told us that they had done all they could for

her and that we were just going to have to live with it the way it was.

> > >

> > > So for the last 5 years or so we have done just that. We have lived with

it and coped the best way that we can. Our hope was that when she turns 18 we

woulld be able to take her to an adult GI who would be more familiar with A and

would have some other options. No adult GIs would touch her until she is 18. We

are almost there. She will be 18 in October.

> > >

> > > I guess what I am leading up to is...what can we expect when we do see an

adult GI? What have other adults w/ A had success with? We have kind of been

hoping that medical science would have improved to the point that we would have

some new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

> > >

> >

>

[Guest guest]

Dear Chinlover aka Christy,

You have mentioned the spasms and dumping syndrome as significant problems for

your daughter, but interestingly to me, nothing relating to swallowing

difficulties, which can lead to the need for more surgeries. I think that is a

very good thing.

Regarding dumping syndrome, I am not in a position to comment, though much has

been written about it, especially by our ectomy members, who have made mention

of learning which foods or combination of foods to avoid and perhaps how

slow/fast to eat a meal. Dumping syndrome seems to be less frequent with HM

patients, but experimenting with diet sometimes helps. I'll assume that since

your daughter has had achalasia for 12 years you have probably tried just about

everything and you need a GI who can help. Depending upon where you live, I'm

sure we can find someone for you.

Regarding the well discussed matter of spasms, what works for some people does

not work for others. We all know that here.  From nifedipine to all sorts of

medication people have tried to rid themselves of these " heart attack " like

pains. Most of us succeed, while a few of us never seem to be helped on a

consistent basis. I would be interested in hearing back from you as to what you

have tried. If you ever read back old posts here, literally dozens of different

kinds of " remedies " have been tried with varying degrees of success (mostly

non-medical).

Before the advent of the internet and this group I felt very isolated.  With

this group we share our ideas and have developed a body of knowledge, especially

with fighting spasms that probably exceeds that of most medical libraries. 

While nifedipine usually helps me, and the key is to take it as fast as

possible, I prefer the non-medical " medication " for spasms.  The moment I feel

it coming on I take drink down a carbonated beverage (which is the worst thing

for some achalasians to drink).  Other times a cracker, plain water, almost any

kind of food.  Other people have just tried drinking warm water, cold water,

ices, ice cream, etc.  Its almost as if you are saying to your esophagus, " hey,

here's something to keep you busy " and the spasms stop!  I have become so

accustomed to being able to stop them easily that I have gotten spoiled. 

However, I am not ignorant of the fact that if I had forgotten to have my

nifedipine on me (something that very rarely happens), and I was somewhere away

from any food or drink, and the spasms started and ramped up fast, I would be in

a lot of trouble.

Please share more information about what your daughter has tried and where you

are located, and I'm sure we can improve the quality of her life.

________________________________

From: chinlover77 <christy@...>

achalasia

Sent: Wed, May 4, 2011 4:45:23 PM

Subject: Future for Daughter with Achalasia

 

My daughter who is now 17 has had A since when was 5y/o. She had her HM w/ PF at

the age of 8. She has since then had a very bad time with chest spasms and

dumping syndrome. She is now lactose intolerant as well. For the first few years

we had her to the Ped. GI regularly to try and stop the spasms and to have her

esophagus stretched so food would go down easier. The Ped. GI here did not seem

to know a lot about kids with this condition. They really didn't want to deal

with it I don't think. They even told us that they had done all they could for

her and that we were just going to have to live with it the way it was.

So for the last 5 years or so we have done just that. We have lived with it and

coped the best way that we can. Our hope was that when she turns 18 we woulld be

able to take her to an adult GI who would be more familiar with A and would have

some other options. No adult GIs would touch her until she is 18. We are almost

there. She will be 18 in October.

I guess what I am leading up to is...what can we expect when we do see an adult

GI? What have other adults w/ A had success with? We have kind of been hoping

that medical science would have improved to the point that we would have some

new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

[Guest guest]

Hi,

I just wanted to encourage you. I was diagnosised with " A " when I was 8 and had

surgery at 17. I will be 50 this year.

There is alot of info on this group. Sandy probably does not remember but we

did a database called " Things that help our spasms " . Its in the databases.

Here is the link

achalasia/database?method=reportRows & tbl=7

I would say, you have to become the expert. I am in Germany now and there are

alot of docs with experience with " A " . They seem to get more training here. I

would say call a few of the known experts like Cleveland Clinic or Dr. Worth

Boyce at Univ of South Florida. There contact info is in the database file of

Doctors. Most will give you a consultation over the phone. Its good to have

all the information you can get.

There is a future, but like alot of us, you have to fight for it-

Many Blessings,

Jeanne

> > >

> > > My daughter who is now 17 has had A since when was 5y/o. She had her HM w/

PF at the age of 8. She has since then had a very bad time with chest spasms and

dumping syndrome. She is now lactose intolerant as well. For the first few years

we had her to the Ped. GI regularly to try and stop the spasms and to have her

esophagus stretched so food would go down easier. The Ped. GI here did not seem

to know a lot about kids with this condition. They really didn't want to deal

with it I don't think. They even told us that they had done all they could for

her and that we were just going to have to live with it the way it was.

> > >

> > > So for the last 5 years or so we have done just that. We have lived with

it and coped the best way that we can. Our hope was that when she turns 18 we

woulld be able to take her to an adult GI who would be more familiar with A and

would have some other options. No adult GIs would touch her until she is 18. We

are almost there. She will be 18 in October.

> > >

> > > I guess what I am leading up to is...what can we expect when we do see an

adult GI? What have other adults w/ A had success with? We have kind of been

hoping that medical science would have improved to the point that we would have

some new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

> > >

> >

>

[Guest guest]

Jeanne,

Thank you for sharing your story. Does this mean that your moyotomy has

lasted you over 30 years?????

If so, who was your surgeon and how does your esophagus look now? I love to hear

that surgeries can hold up and have such durability over the years.

All the best

Cara

> > > >

> > > > My daughter who is now 17 has had A since when was 5y/o. She had her HM

w/ PF at the age of 8. She has since then had a very bad time with chest spasms

and dumping syndrome. She is now lactose intolerant as well. For the first few

years we had her to the Ped. GI regularly to try and stop the spasms and to have

her esophagus stretched so food would go down easier. The Ped. GI here did not

seem to know a lot about kids with this condition. They really didn't want to

deal with it I don't think. They even told us that they had done all they could

for her and that we were just going to have to live with it the way it was.

> > > >

> > > > So for the last 5 years or so we have done just that. We have lived with

it and coped the best way that we can. Our hope was that when she turns 18 we

woulld be able to take her to an adult GI who would be more familiar with A and

would have some other options. No adult GIs would touch her until she is 18. We

are almost there. She will be 18 in October.

> > > >

> > > > I guess what I am leading up to is...what can we expect when we do see

an adult GI? What have other adults w/ A had success with? We have kind of been

hoping that medical science would have improved to the point that we would have

some new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

> > > >

> > >

> >

>

[Guest guest]

Hello,

Just joined the group today. Should have done this two years ago! Typically I

lurk but my symptoms have gotten a lot worse lately so here goes...

I too am very interested in the response to this question.

One thing I did that has really helped but hasn't been listed on this list is to

get tested for food sensitivities. I found out I am " sensitive " to lecithin,

FD & C yellow #6, milk, honey, lemon, spinach, green pepper, soy and chicken. Food

sensitivies are reactions that show up 3 - 36 hours later and don't show up on

the allergy test. Once I cut those things out of my diet, my heartburn stopped,

and I finally figured out the heartburn was causing the spasm. Basically when

anything funky is in the bottom of the esophogus, it will contract to get rid of

it. I was taking 2 nexium and 2 zantac plus tums every day and was still getting

heartburn 5 - 6 times a day. The diet change helped. Also, I have been following

the four hour body diet and that seems to agree with me (beans, meat, and

veggies.)

When I had the extreme spasm (I get the " heart attack " spasm about once a month)

I found that for me that if I got cold water within one second, it would go

away. So I carry water every where. Regarding the mild/moderate spasm with

eating, I just go slow and eat slippery foods. I take 2.5 hrs to eat lunch. One

bite, wait a half hour, one bite, etc. Perhaps, if she is still in school, she

may be able to get a doctors note to allow her to eat throughout the day. I am

constantly eating. Chocolate, fatty foods, coffee, might as well enjoy it while

I can. I am a teacher, and have had students that have to eat during class, and

it's not a big deal. Also they kids don't seem to mind if I eat a bite every now

and then.

Also it gets worse with stress.

Thanks for any feedback anyone can give me on the treatment options. I am

especially interested in older people, and the long term prognosis. Also in

stellar surgeries or alternative medicines.

> > > > >

> > > > > My daughter who is now 17 has had A since when was 5y/o. She had her

HM w/ PF at the age of 8. She has since then had a very bad time with chest

spasms and dumping syndrome. She is now lactose intolerant as well. For the

first few years we had her to the Ped. GI regularly to try and stop the spasms

and to have her esophagus stretched so food would go down easier. The Ped. GI

here did not seem to know a lot about kids with this condition. They really

didn't want to deal with it I don't think. They even told us that they had done

all they could for her and that we were just going to have to live with it the

way it was.

> > > > >

> > > > > So for the last 5 years or so we have done just that. We have lived

with it and coped the best way that we can. Our hope was that when she turns 18

we woulld be able to take her to an adult GI who would be more familiar with A

and would have some other options. No adult GIs would touch her until she is 18.

We are almost there. She will be 18 in October.

> > > > >

> > > > > I guess what I am leading up to is...what can we expect when we do see

an adult GI? What have other adults w/ A had success with? We have kind of been

hoping that medical science would have improved to the point that we would have

some new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

> > > > >

> > > >

> > >

> >

>

[Guest guest]

> We are located in Phoenix, AZ.

>

Have you tried the Mayo Clinic there? Kristi L. Harold, M.D. does heller

myotomies at the Phoenix Mayo hospital.

http://www.mayoclinic.org/bio/12342114.html

notan

[Guest guest]

I went looking for the beginning of this post because it looked interesting.

Then I realized it was about me. XD

Hi, everybody!

> > > > >

> > > > > My daughter who is now 17 has had A since when was 5y/o. She had her

HM w/ PF at the age of 8. She has since then had a very bad time with chest

spasms and dumping syndrome. She is now lactose intolerant as well. For the

first few years we had her to the Ped. GI regularly to try and stop the spasms

and to have her esophagus stretched so food would go down easier. The Ped. GI

here did not seem to know a lot about kids with this condition. They really

didn't want to deal with it I don't think. They even told us that they had done

all they could for her and that we were just going to have to live with it the

way it was.

> > > > >

> > > > > So for the last 5 years or so we have done just that. We have lived

with it and coped the best way that we can. Our hope was that when she turns 18

we woulld be able to take her to an adult GI who would be more familiar with A

and would have some other options. No adult GIs would touch her until she is 18.

We are almost there. She will be 18 in October.

> > > > >

> > > > > I guess what I am leading up to is...what can we expect when we do see

an adult GI? What have other adults w/ A had success with? We have kind of been

hoping that medical science would have improved to the point that we would have

some new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

> > > > >

> > > >

> > >

> >

>