RE: Taniea's proposed treatment plan

[Guest guest]

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]

I haven't read many if the studies, but I'm in 100% agreement with Helene. It

seems like overkill considering what she has already been through. I can't

imagine your daughter ( or my son) having to go through all of that. What a

rough go for you both. So sorry that your daughter and yourself have to go

through this again.

Sent from my iPhone

On Aug 2, 2011, at 1:24 PM, helene stovall <stovall.h@...> wrote:

> 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]

I am wondering.. Do they want to do both a stretch and botox, together?  Did

Pelligrini do the original surgery?  How many stretches has she had? 

Has she been scoped and has that video been sent to Pelligrini? Is this a

research study?What does " Native " mean?

I don't think a child can be in a research study with out the parents permission

but unless it was truly shown to have a significant outcome.. I would hesitate

as botox and stretching has been around a long time and are questionable.  

I would send the scope video out to Pelligrini and speak with him.. What does

being limited by the word Native mean?? There are a lot of options for you..if

you need to travel and don't have insurance. There are options for you for

working with your insurance if that is the limitation. 

Botox has not been recommended for children from what I have read and

heard. This little girl has to be treated tenderly, as her " parts " are young

and more fragile, growth wise. She also has a long life to wish for ahead so we

honor that by doing what ever it takes to get the best for our children. 

Lastly, we can all offer help and suggestions, but ultimately, it will be up to

you what is done.   I would find the strongest, smartest, friend or relative

you know to advocate with and for you, to act as an agent and listener for you..

to advocate for what you need and demand it.

To your comment..   "   Although (especially since) you all are not doctors " ,

I have to say that the combined knowledge, experience and research here equals

more than any doctor any where.. The only difference is .... we have not done

the procedure ourselves and we  obviously are on the other end of the scalpel.

 

please let us know what is happening.. Carolynmom of Cameron myo'd and fundo'd

in 05

 

From: shareedanieal <shareedanieal@...>

Subject: Taniea's proposed treatment plan

achalasia

Date: Tuesday, August 2, 2011, 9:15 AM

 

Hello,

I recently received a call from Dr. Altaf Taniea's GI and he said that his

treatment plan at the moment is that she have another dilation with Botox. After

which if she shows little to no improvement he would like to try it again and

then another motility and myotomy. He says that there has been research

concerning Botox and that it has been shown to help significantly. Now I have

been reading previous post and I know that for some there was relief but for

some there is concern about it. She already shows signs of being a keloid former

and it seems to run in my family.

So here are my concerns and questions.

Have any you heard of such research particularly directed towards children?

Although (especially since) you all are not doctors I do value your opinions do

you think that this a viable plan?

Other than voicing my concerns to the GI is there any other way I can ensure

that she is getting the best care possible? The GI is consulting with Dr.

Pelligrini and others and he is open to any suggestions that I offer. But travel

is not an option for us as we are Native and we are limited to where they are

willing to send her.

Thank you in advance

Shamira

[Guest guest]

By Native I mean we are Native American they cover her medical bills outside of

insurance provided they approve the Dr/procedure first . I wil answer the rest

of your questions shortly my phone sucks

Re: Taniea's proposed treatment plan

I am wondering.. Do they want to do both a stretch and botox, together?  Did

Pelligrini do the original surgery?  How many stretches has she had? 

Has she been scoped and has that video been sent to Pelligrini? Is this a

research study?What does " Native " mean?

I don't think a child can be in a research study with out the parents

permission but unless it was truly shown to have a significant outcome.. I would

hesitate as botox and stretching has been around a long time and are

questionable.  

I would send the scope video out to Pelligrini and speak with him.. What does

being limited by the word Native mean?? There are a lot of options for you..if

you need to travel and don't have insurance. There are options for you for

working with your insurance if that is the limitation. 

Botox has not been recommended for children from what I have read and

heard. This little girl has to be treated tenderly, as her " parts " are young

and more fragile, growth wise. She also has a long life to wish for ahead so we

honor that by doing what ever it takes to get the best for our children. 

Lastly, we can all offer help and suggestions, but ultimately, it will be up to

you what is done.   I would find the strongest, smartest, friend or relative

you know to advocate with and for you, to act as an agent and listener for you..

to advocate for what you need and demand it.

To your comment..   &

[The entire original message is not included]

[Guest guest]

Shamira wrote:

Taniea

> ... Taniea's GI and he said that his treatment plan at the moment is

> that she have another dilation with Botox. After which if she shows

> little to no improvement he would like to try it again and then

> another motility and myotomy. ...

>

Being that Taniea has already had the myotomy I don't think there is as

much concern about scarring from the Botox and dilatation. What else

beside those would you do other than medications or move on to a myotomy

redo or esophagectomy? If it were me I would be considering either the

Botox, dilatation or both. There are some studies that say that together

they are more effective than alone but not by much and others that say

maybe not. If it didn't work the first time a graded dilatation or

increase in dose sometimes does help. It makes sense to me. If I was

happy with the doctor then I would strongly consider it.

Efficacy of botulinum toxin injection before pneumatic dilatation in

patients with idiopathic achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/15361093

Combined treatment of achalasia - botulinum toxin injection followed by

pneumatic dilatation: long-term results

http://www.ncbi.nlm.nih.gov/pubmed/19732128

Clinical study on combined therapy of botulinum toxin injection and

small balloon dilation in patients with esophageal achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/20090338

Comparison of pneumatic dilation with pneumatic dilation plus botulinum

toxin for treatment of achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/21133003

notan

[Guest guest]

My only real concerns about Dr. Altaf is that the communication sucks. But he is

actively searching for other options.  Motility is his specialty but I don't

know if that helps.  The thought I think was that because they haven't tried

Botox before maybe it would be the needed solution (lack of better words).

There are no other treatment plans that have been discussed. I haven't heard

anything about medication. Only dilation, Botox, myotomy redo and another

motility study to see if it is helping.

Thank you again Notan. I really appreciate your knowledge and willingness to

share it.

Shamira

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Tuesday, August 2, 2011 4:46 PM

Subject: Re: Taniea's proposed treatment plan

 

Shamira wrote:

Taniea

> ... Taniea's GI and he said that his treatment plan at the moment is

> that she have another dilation with Botox. After which if she shows

> little to no improvement he would like to try it again and then

> another motility and myotomy. ...

>

Being that Taniea has already had the myotomy I don't think there is as

much concern about scarring from the Botox and dilatation. What else

beside those would you do other than medications or move on to a myotomy

redo or esophagectomy? If it were me I would be considering either the

Botox, dilatation or both. There are some studies that say that together

they are more effective than alone but not by much and others that say

maybe not. If it didn't work the first time a graded dilatation or

increase in dose sometimes does help. It makes sense to me. If I was

happy with the doctor then I would strongly consider it.

Efficacy of botulinum toxin injection before pneumatic dilatation in

patients with idiopathic achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/15361093

Combined treatment of achalasia - botulinum toxin injection followed by

pneumatic dilatation: long-term results

http://www.ncbi.nlm.nih.gov/pubmed/19732128

Clinical study on combined therapy of botulinum toxin injection and

small balloon dilation in patients with esophageal achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/20090338

Comparison of pneumatic dilation with pneumatic dilation plus botulinum

toxin for treatment of achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/21133003

notan

[Guest guest]

Would Dr. Altaf at least contact one of the doctors people have listed here

to see if they could give him a better idea on if this would be a good

course of treatment for your daughter. If he is willing to do that, it may

help ease your mind about any procedures he recommends in the future.

S

-- Re: Taniea's proposed treatment plan

Shamira wrote:

Taniea

> ... Taniea's GI and he said that his treatment plan at the moment is

> that she have another dilation with Botox. After which if she shows

> little to no improvement he would like to try it again and then

> another motility and myotomy. ...

>

Being that Taniea has already had the myotomy I don't think there is as

much concern about scarring from the Botox and dilatation. What else

beside those would you do other than medications or move on to a myotomy

redo or esophagectomy? If it were me I would be considering either the

Botox, dilatation or both. There are some studies that say that together

they are more effective than alone but not by much and others that say

maybe not. If it didn't work the first time a graded dilatation or

increase in dose sometimes does help. It makes sense to me. If I was

happy with the doctor then I would strongly consider it.

Efficacy of botulinum toxin injection before pneumatic dilatation in

patients with idiopathic achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/15361093

Combined treatment of achalasia - botulinum toxin injection followed by

pneumatic dilatation: long-term results

http://www.ncbi.nlm.nih.gov/pubmed/19732128

Clinical study on combined therapy of botulinum toxin injection and

small balloon dilation in patients with esophageal achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/20090338

Comparison of pneumatic dilation with pneumatic dilation plus botulinum

toxin for treatment of achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/21133003

notan

[Guest guest]

Yes, Dr. Altaf says he has talked to several other GI's I am sure adding a few

more wouldn't hurt. I have asked him to talk to Dr. Pelligrini and he acted as

if he has but I am not there to monitor his calls, lol

________________________________

From: s <ravenstorm2008@...>

Achalasia Group <achalasia >

Sent: Tuesday, August 2, 2011 9:02 PM

Subject: Re: Taniea's proposed treatment plan

 

Would Dr. Altaf at least contact one of the doctors people have listed here

to see if they could give him a better idea on if this would be a good

course of treatment for your daughter. If he is willing to do that, it may

help ease your mind about any procedures he recommends in the future.

S

-- Re: Taniea's proposed treatment plan

Shamira wrote:

Taniea

> ... Taniea's GI and he said that his treatment plan at the moment is

> that she have another dilation with Botox. After which if she shows

> little to no improvement he would like to try it again and then

> another motility and myotomy. ...

>

Being that Taniea has already had the myotomy I don't think there is as

much concern about scarring from the Botox and dilatation. What else

beside those would you do other than medications or move on to a myotomy

redo or esophagectomy? If it were me I would be considering either the

Botox, dilatation or both. There are some studies that say that together

they are more effective than alone but not by much and others that say

maybe not. If it didn't work the first time a graded dilatation or

increase in dose sometimes does help. It makes sense to me. If I was

happy with the doctor then I would strongly consider it.

Efficacy of botulinum toxin injection before pneumatic dilatation in

patients with idiopathic achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/15361093

Combined treatment of achalasia - botulinum toxin injection followed by

pneumatic dilatation: long-term results

http://www.ncbi.nlm.nih.gov/pubmed/19732128

Clinical study on combined therapy of botulinum toxin injection and

small balloon dilation in patients with esophageal achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/20090338

Comparison of pneumatic dilation with pneumatic dilation plus botulinum

toxin for treatment of achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/21133003

notan