Re: Payne 5 Years old Achalasia, Mega- Esophagus, Tracheal Malaysia

[Guest guest]

Hi, guys, welcome to the group. I hope some of the other parents step up, as

you belong to a pretty small sub group here. My sense is, NO, it doesn't get

better, ever, on it's own. *Especially* for the little ones. GOOD and

competent medical care is about the only road to travel.

Achalasia beyond being a rare disease, is even rarer in children, but not

unheard of:

http://bhj.org/journal/2004_4602_april/html/achalasia_201.htm

http://www.rcsed.ac.uk/journal/vol43_2/4320044.htm

http://www.ncbi.nlm.nih.gov/pubmed/18402256

This is also a good source of info, from here:

achalasia/msearch?query=esquared & submit=Sea\

rch & charset=UTF-8

Good luck, and love and light,

in WV

>

> Our daughter is 5 years old, diagnosed with Achalasia,

Mega-Esophagus,and Tracheal Malaysia.

>

> She just underwent a heller miotomy in Reno, with a partial fundoplycation in

Oct 2011, and now has a trachesotomy and j/g

> tube for nutrition. The surgery opened the esophagus now but she has acid

re-flux and the esophagus is a large pipe with no motility.

>

> We are curious if anyone has seen this in anyone so young , and if anyone has

had/seen a child that has Achalasia that has improved given time - or is what

the doctors are saying that her esophagus will never function as normal and only

be a pipe for the rest of her life true?

>

> Are there any natural supplements that can help to re-activate the motility in

her esophagus, and/or shrink the walls of the esophagus? (her esophagus is 4x

the normal size and the walls are an inch thick approximately according to the

doctors here)

>

> We are thinking of taking her to Ohio to Cincinnati Children's Hospital, can

anyone suggest anywhere else or are we on the right track? We have looked into

colon interposition as a possible future solution, but we are still hopeful this

could reverse given time.

>

> Need some guidance.

>

> Thank you in advance,

>

> and Payne

>

[Guest guest]

Oh my gosh  - I am so sorry she has to endure this at such a young age. I am

sure you already know this is a degenerative disorder and there is no cure. As

far as I know the motility cannot be restored once it is gone. My heart and

prayers are with you and your family! From what I have ready, next to the Mayo

Clinic Ohio has the second best Achalasia center in the US.

 

Best of luck to you guys!

 

Kim A 

________________________________

From: Pahrump2009 <vizionx@...>

achalasia

Sent: Thursday, February 23, 2012 1:54 AM

Subject: Payne 5 Years old Achalasia, Mega- Esophagus,

Tracheal Malaysia

 

Our daughter is 5 years old, diagnosed with Achalasia,

Mega-Esophagus,and Tracheal Malaysia.

She just underwent a heller miotomy in Reno, with a partial fundoplycation in

Oct 2011, and now has a trachesotomy and j/g

tube for nutrition. The surgery opened the esophagus now but she has acid

re-flux and the esophagus is a large pipe with no motility.

We are curious if anyone has seen this in anyone so young , and if anyone has

had/seen a child that has Achalasia that has improved given time - or is what

the doctors are saying that her esophagus will never function as normal and only

be a pipe for the rest of her life true?

Are there any natural supplements that can help to re-activate the motility in

her esophagus, and/or shrink the walls of the esophagus? (her esophagus is 4x

the normal size and the walls are an inch thick approximately according to the

doctors here)

We are thinking of taking her to Ohio to Cincinnati Children's Hospital, can

anyone suggest anywhere else or are we on the right track? We have looked into

colon interposition as a possible future solution, but we are still hopeful this

could reverse given time.

Need some guidance.

Thank you in advance,

and Payne

[Guest guest]

Hello, . Welcome to this support group.

wrote:

>

> Our daughter is 5 years old, diagnosed with Achalasia,

> Mega-Esophagus,and Tracheal Malaysia.

>

Tracheomalacia is more common in infants than a child that age. Is this

an otherwise special needs child, or is the tracheomalacia simply

secondary to the achalasia. That can happen even in older patients with

megaesophagus. I don't remember that combination in anyone in this group

before though.

>

> She just underwent a heller miotomy in Reno, with a partial

> fundoplycation in Oct 2011, and now has a trachesotomy and j/g

> tube for nutrition.

>

You may know this but there are also groups like this one for children

with GERD, (they sometimes also have fundoplications) and for tube

feeding. Hopefully some of the parents will chime in.

>

> We are curious if anyone has seen this in anyone so young , and if

> anyone has had/seen a child that has Achalasia that has improved given

> time - or is what the doctors are saying that her esophagus will never

> function as normal and only be a pipe for the rest of her life true?

>

There have been other young children in the group, or their parents, but

not many. Achalasia is rare, but very rare at that age.

>

> Are there any natural supplements that can help to re-activate the

> motility in her esophagus, and/or shrink the walls of the esophagus?

>

Not much chance there.

>

> We are thinking of taking her to Ohio to Cincinnati Children's

> Hospital, can anyone suggest anywhere else or are we on the right track?

>

Have you contacted the Cleveland Clinic. They deal with a lot of

achalasia, even children with achalasia.

> We have looked into colon interposition as a possible future solution,

> but we are still hopeful this could reverse given time.

>

Not likely to become normal. Colon interposition is one possibility, use

of other intestines also, or gastric pull-up.

I have indexed some papers that deal with achalasia and children at:

https://www.zotero.org/groups/achalasia_atheneum/items

go there and click on Children. There are 21 items indexed with

abstracts and links to sources. If you need help understanding any of it

let me know.

For information about esophagectomies and esophageal replacements go to

the same site and click on Surgery and then click on Esophagectomy, most

of those papers will be adult oriented.

notan

[Guest guest]

Our daughter was diagnosed at eleven, had a heller myotomy and fundoplication at

12, and multiple dial actions between then and 17. This past September, she had

an ectomy with a thorastic reconstruction. She no longer has achalasia symptoms,

but is still in recovery from the surgery.

Sent from my iPad

[Guest guest]

Helene wrote:

> thorastic reconstruction

That isn't a very descriptive term. Thorastic reconstruction simply

means reconstruction done in the chest (thorastic). Cervico-thoracic

would be neck and chest. Being that they didn't say cervico it could

mean only a portion in the chest and not in the neck. Do you know which

part of the body was use to replace the damaged section of esophagus?

notan

[Guest guest]

Her stomach was pulled up and attached in the throat area, dr rosemurgy has a

similar surgery on YouTube, along with his other surgeries. My daughter was

diagnosed with end stage achalasia.

Sent from my iPad

[Guest guest]

>Tracheomalacia is more common in infants than a child that age. Is >this an

otherwise special needs child, or is the tracheomalacia >simply secondary to the

achalasia. That can happen even in older >patients with megaesophagus. I don't

remember that combination in >anyone in this group before though.

We first noticed the condition when she turned 1, she turned blue on us and we

had to flight for life her from outside of Vegas into town. They tested her at

the local children's hospital for 9 days and did a couple of consults to UCLA

and Stanford and let us go home without a diagnosis. They told us she had an

enlarged esophagus, but they did not know why, and to take her home and keep an

eye on her. When the caught it this year, they explained that it was not

pronounced enough to determine what it was back then and that the doctors now

would have probably not caught it back then either.

Other than the esophageal issue, she is normal and healthy. The tracheomalacia

is secondary due the the megaesophagus (and most likely the 1 " esophageal wall)

breaking down the back cartilage in the trachea causing it to be floppy.

> > Are there any natural supplements that can help to re-activate the

> > motility in her esophagus, and/or shrink the walls of the esophagus?

> >

>

> Not much chance there.

I have read online about esiac tea and ferrets with achalasia and it helping

them.. just wondering if anyone here has ever tried it and if there was any

success?

> > We are thinking of taking her to Ohio to Cincinnati Children's

> > Hospital, can anyone suggest anywhere else or are we on the right track?

> >

>

> Have you contacted the Cleveland Clinic. They deal with a lot of

> achalasia, even children with achalasia.

We are obtaining her records first to make sure they are all sent over. Then we

will be sending them to Clevland and Cincinnati to see if we can get to look

over what was done here in Reno and possibly give us better direction.

> > We have looked into colon interposition as a possible future solution,

> > but we are still hopeful this could reverse given time.

> >

>

> Not likely to become normal. Colon interposition is one possibility, use

> of other intestines also, or gastric pull-up.

And most of that I have been reading about it becomes a functional tube but is

gravity driven. Which is how her esophagus is now. The only difference being if

they did something like a colon interposition the trachealmalasia would

improve.

> I have indexed some papers that deal with achalasia and children at:

> https://www.zotero.org/groups/achalasia_atheneum/items

> go there and click on Children. There are 21 items indexed with

> abstracts and links to sources. If you need help understanding any of it

> let me know.

>

> For information about esophagectomies and esophageal replacements go to

> the same site and click on Surgery and then click on Esophagectomy, most

> of those papers will be adult oriented.

>

> notan

Thanks for the info Notan - will look at those links. One other possibility I

found is a link between Achalasia and Growth Hormone Deficiency which I am going

to have her tested for, in my opinion it could be a possibility of the root

cause. Although it will not fix the problem it could prevent further

complications if they find she has GHD. Below are the links I found.

>

http://www.ncbi.nlm.nih.gov/pubmed/21778130

http://onlinelibrary.wiley.com/doi/10.1111/j.1442-200X.2010.03314.x/full

-Chris

[Guest guest]

>

> Oh my gosh  - I am so sorry she has to endure this at such a young age. I am

sure you already know this is a degenerative disorder and there is no cure. As

far as I know the motility cannot be restored once it is gone. My heart and

prayers are with you and your family! From what I have ready, next to the Mayo

Clinic Ohio has the second best Achalasia center in the US.

>  

> Best of luck to you guys!

>  

> Kim A 

Thanks Kim, have looked into the Mayo clinic as well, but did not know they were

the best Achalasia center. Which one Florida, Minnesota, or Arizona? - Chris

[Guest guest]

So in doing that procedure does that eliminate the " pipe " altogether?

I just read through your other post to Phil from Miami.

I am curious what are " dial actions " ? and in Leigh's case were they just waiting

for it to get better and it never did, and is that what lead to the esophageal

removal? or did they just want to wait for her to mature and you knew that would

be the eventual outcome?

Recently I have read about them growing a tracheal tube from stem cells in

Denmark, which could also be applied to reconstructing the esophagus and

bladder. I know our government is preventing us from researching that direction

now but I am hopeful for the future.

http://www.cbsnews.com/8301-504763_162-20077828-10391704.html

http://www.eurekalert.org/pub_releases/2004-02/uow-scf021704.php

Also I am curious about Acell technology (the stuff that grew the finger on the

guy that cut it off). It seems that that could be a direction as well, they were

stating that placed next to dead nerves it could possible grow them back.

I am glad to hear your daughter is doing well and in college. Not easy choices

to make, I am sure along the way, but reading her story give me hope as well.

Thank you.

-Chris

>

> Her stomach was pulled up and attached in the throat area, dr rosemurgy has a

similar surgery on YouTube, along with his other surgeries. My daughter was

diagnosed with end stage achalasia.

>

> Sent from my iPad

>

[Guest guest]

Pahrump2009 wrote:

>

> We first noticed the condition when she turned 1 ... Other than the

> esophageal issue, she is normal and healthy. The tracheomalacia is

> secondary due the the megaesophagus ...

>

There are some syndromes that can cause achalasia in children but you

would most likely already know if she had one of those. Triple A (AAA)

syndrome is one and Down syndrome is the another. Tracheal problems and

esophageal problems are reported in some DS cases which is why I asked

if the tracheomalacia was secondary to the achalasia. Glad to hear she

is otherwise healthy and normal.

Sometime we ask ourselves what we did to cause our achalasia. We have

had some discussions about it. No one has ever found anything any of us

did to cause achalasia. You can be sure there was nothing you did to

cause it either. It isn't inherited either (other than some very rare

types). Countless other people do the same things we did but they don't

get achalasia. This is how it is with achalasia. There are not a lot of

answers or guarantees. We don't know what our future is or how bad it

will get or if our treatment will last a lifetime. We are each unique,

but find sharing with others with achalasia a comfort. Your child is

unique. I hope we are a comfort for you and her.

notan

[Guest guest]

Hi! I am new to the achalasia thing but an old hand at managing pediatric care

(I also have a complicated brain tumor kid).

I agree with notan that the issue of " best " is tricky for a lot of different

reasons. More importantly, you HAVE to take children to pediatric specialists.

They have to be seen and treated at pediatric hospitals by doctors who see a lot

of a certain kind of patient.

The recommendations for children are different than they are for adults for a

multitude of reasons. The size of their parts is actually a big factor (I have

more experience dealing with pediatric ENTs, and airway concerns for kids are

totally different than they are for adults), but it's far from the only one.

If you are looking at surgery, which is highly probable with achalasia, you

benefit by being a children's hospital that does tons of surgeries of whatever

flavor you need done. Volume matters and it does affect the outcome (I came

across a study on the efficacy of HM in kids and it came to this conclusion,

though this is a well known principle in surgery).

I also personally believe very strongly in getting second and third (and so on)

opinions when you have to make serious decisions. From what I gather, treatment

for pediatric achalasia is not strongly established and different institutions

have different approaches, including the details in performing a myotomy.

Although achalasia isn't " curable " per se, it is treatable, and you want to

weight the scales to improve your chance of success.

Best of luck!

Tamiko, m/o Aidan

age 8, suspected achalasia, manometry scheduled for 3/20

www.caringbridge.org/visit/jediaidan

> >

> > Thanks Kim, have looked into the Mayo clinic as well, but did not know

> > they were the best Achalasia center.

> >

>

> I don't like to get into the who is best thing but I had mine in AZ at

> Mayo by Dr. Kristi Harold, but I don't know if she does many children

> with achalasia. You would have to ask her. Which is one of the first

> questions you should be asking anyone you contact.

>

> Kristi L. Harold

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

>

> notan

>

>

>

>

[Guest guest]

Sorry for the " dial action " my iPad changed the word, which, of course, was

dilation. Leigh underwent diagnostic every year. She was put on all the

medications mentioned in this group, with no positive effects. In the end, she

was always in pain, spasms were continuous. Gastro guys could offer nothing. Her

heller was still open, it was the spasms that were debilitating, with no relief.

Dr rosemurgy offered to remove the esophagus and told us with the surgery she

would have, not a normal life, but one in which she wouldn't be in constant pain

anymore. We also tried to wait for a cure, or replacement for her damaged

esophagus. But she had been so sick for so long, we left the decision to remove

the esophagus with Leigh who was two weeks shy of her 18th birthday at the time.

We supported her decision to remove the organ that had made her young life so

hard for so long. Will we regret this decision down the road? I pray not. But

this disease had taken so much from our child, this seemed like the only hopeful

choice. She is 5months post surgery today. She is driving, going to college and

living a much more normal life. Her digestive system has become sensitive to

gluten due to the changes, but other then that, she can swallow and has NO

Spasms anymore. I am not sure what the future will bring. I hope for a pain free

future for both out children.

> >

> > Her stomach was pulled up and attached in the throat area, dr rosemurgy has

a similar surgery on YouTube, along with his other surgeries. My daughter was

diagnosed with end stage achalasia.

> >

> > Sent from my iPad

> >

>

[Guest guest]

That poor thing!!! To have to endure all that at such a young age. My prayers

are with you and your family. I hope she gets well soon!

 

Kim A

________________________________

From: Helene Stovall <stovall.h@...>

" achalasia " <achalasia >

Sent: Tuesday, February 28, 2012 11:52 PM

Subject: Re: Payne 5 Years old Achalasia, Mega- Esophagus,

Tracheal Malaysia

 

Her stomach was pulled up and attached in the throat area, dr rosemurgy has a

similar surgery on YouTube, along with his other surgeries. My daughter was

diagnosed with end stage achalasia.

Sent from my iPad

[Guest guest]

most likely not Minnesota.

> >

> > Oh my gosh  - I am so sorry she has to endure this at such a young

age. I am sure you already know this is a degenerative disorder and there is no

cure. As far as I know the motility cannot be restored once it is gone. My heart

and prayers are with you and your family! From what I have ready, next to the

Mayo Clinic Ohio has the second best Achalasia center in the US.

> >  

> > Best of luck to you guys!

> >  

> > Kim A 

>

> Thanks Kim, have looked into the Mayo clinic as well, but did not know they

were the best Achalasia center. Which one Florida, Minnesota, or Arizona? -

Chris

>

>

>

>

>