Re: juvenile / looking for info

[Guest guest]

First get all the tests done and see how far along the disease is. Then the options are as follows. Least invasive is balloon dilations, then dilations with botox. Surgery laproscopic or open. Heller myotomy is the surgery and it can be done lapro or open. I have had all but the myotomy open. I will be having that done on the 9th of this month. This is a progressive disease so you have to think long term here. Knowing now what I do I would not do the botox or many balloon dilations. Doing those options causes scar tissue and makes it harder for the Heller myotomy do be done. Try to find a sergeon that deals with this diseas that will help out a lot. I hope you find what you need and all goes well.

[Guest guest]

Hi Caroline

As I understand achalasia, it only gets worse. Although I dont know

much about juvenile achalasia, I was diagnosed at 29 still

relatively young. The doctors here in Australia highly recommend

surgery for younger people and only recommend botox for much older

people. The doctors say that it affects the outcome of surgery if

you have scar tissue from botox. I have not yet had surgery as I am

newly diagnosed but will do so as soon as I can. I know that surgery

should not be taken lightly but these days it is highly recommended

(here in Australia anyway).

It must be very difficult for you at the moment and my thoughts are

with you.

Biljana Silke

>

> Hi, I have a 13 year old, who has achalasia, (diag, so far) we

have

> had the swallow tests done, yesterday at UC . We are moving

on

> to the next step which is the Gatroenterologist (?) I am

wondering

> if you can share some info, please let me know what options there

> are, what you have had done, are there any parents of children

here?

> and have you been to uc for any treatments?

> Thank you

> Carolyn

[Guest guest]

Dear Carolyn,

I have a son age 15 (Stefan),who has Achalasia,it seemed to be one

thing after another during the year before diagnosis: first a

persistent stiff and painful neck, (physio didn't help), then chest

pains, which we discovered could be helped by gulping cold drinks,

then swallowing difficulties:After the barium swallow, the doctor

diagnosed Achalasia, and he had a Heller's Laparoscopic Myotomy in

July 2004----he seemed to get worse for a bit (wheezing, dramatic

swallowing manoeuvres etc), but now I think he is coping really

well. He says that he HAS got worse, and that he only appears to be

coping because he has learned to time his swallowing/drinking to get

the food to go down. (He did have a second Barium which showed no

improvement)At present he is in a queue for manometry at Chelsea and

Westminster hospital. So,as he is gaining weight slowly but surely,

and his life is pretty well normal, we will bide our time until

after the manometry-----

Other info which may or may not be relevant: he had bad Asthma as a

baby, but it's not really a problem nowadays. He had an operation

for an inguinal hernia in 2000.

I mention these because some people on this site have been looking

for links between A sufferers and stress/operations/other problems

etc.

Best wishes to you and your son,

Sally

[Guest guest]

>

> Hi, I have a 13 year old, who has achalasia, (diag, so far) we have

> had the swallow tests done, yesterday at UC . We are moving

on

> to the next step which is the Gatroenterologist (?) I am wondering

> if you can share some info, please let me know what options there

> are, what you have had done, are there any parents of children

here?

> and have you been to uc for any treatments?

> Thank you

> Carolyn

Hi Carolyn- I am now 36 but was diagnosed at 15 with A after about 3

years of problems. Be very thankful that you received a diagnosis so

quickly, my mother still talks about the frustration of being told I

was just a nervous girl- puberty- the whole thing.

I had 3-4 dilations initially - at that time the doctors and my

parents were trying to avoid surgery. But everything I've learned

since says that surgery is better sooner rather than later and now

you can have it done laproscopically - only a day or 2 in the

hospital. I had an open hellers at age 20, it was all that was

available at the time and I have been pretty good since. I don't

think any of us can say that A doesn't effect our lives but my life

is pretty normal. Since my surgery I can eat most things, I'm

married, I have a daughter and another on the way, a job - normal

kinds of stuff.

I have slept elevated since my diagnosis because I do suffer from

some regurgitation if I lay flat. He may or may not have that problem

not everyone does. I also have taken acid blocking meds for years - I

would prefer not to but the benefits outweigh the risks and the acid

blockers (I take protonix currently) have VERY LOW side effects - I

can even take it while pregnant.

I won't say it's not a challenge and there are days I cry from

frustration but there are things that are worse. As time goes on, you

and your son will learn how to cope. There may be specific foods he

can't eat, stress is definately a factor at meal time. He may or may

not have acid reflux. This site is a wealth of information - everyone

is different but you can get tons of ideas right here.

Even after more than 20 years of dealing - I'm learning new things

all the time from this group.

If you do select surgery, whether now or in the future, make sure you

find an experienced surgeon!!

Good luck to you both - check in often and feel free to ask a

gazillion questions!!!

Happy Swallowing

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