Re: Helene Re: Taniea's proposed treatment plan

[Guest guest]

It seems that this the only treatments  that is available to us. Botox is by

far not my first choice but she has had 3 dilations and it in the past has not

worked. This is the main concern it seems as it hasn't worked yet chances are

slim it will. But that is me being 'realistically' pessimistic. But tbh the

previous myotomy if it is decided that it has failed which I think it has

wouldn't of even lasted a year.

I hope they speed up things with Leigh how is she doing btw?  I read on the

kids page (facebook) she was having troubles again.

Wishing you the best

Shamira

________________________________

From: helene stovall <stovall.h@...>

" achalasia " <achalasia >

Sent: Tuesday, August 2, 2011 12:24 PM

Subject: Re: Taniea's proposed treatment plan

 

that sounds crazy to me. putting that child through those procedures only to go

back in for another myotomy seems like a waste. most of the studies show with

children that dialation and botox don't last very long, and the myotomy may buy

her about 5 years. we went the dialation route and it ws redundant, and had to

be repeated shortly after. we are waiting for the referral to the surgeon in

tampa and then will head out there.

[Guest guest]

Sharmira

I am sorry if I came across too strong. You and I are at a similar point in

their illness and are both fighting so hard to get their needs met. if the

decision is financially based then appeal through Indian services, and there are

other resources out there, but if a doc you trust said dilation is the right

choice then give it another try. Our hearts are with you in this decision making

process. I constantly read studies trying to determine what to do next to ensure

Leigh the best life possible. Pediatric onset achalasia has changed all of our

lives, our dreams and expectations. They will still get where they need to go,

but it will take longer and the journey will, at times, be difficult. Lucky they

have super moms.

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