Re: (Carolyn) Taniea's proposed treatment plan

[Guest guest]

Ok sorry about that. As I stated in the previous email we are Native American

and Indian Health Services pay for the medical cost outside of the insurance.

They will not approve her to go out of state with out them seeing that there is

simply no one available in Oklahoma who is qualified on paper to treat her

properly.  This is what limits us.

I am not sure of the extent of Dr. Pelligrini's involvement in Taniea's

treatment and no he didn't perform  the original surgery. Dr. Ranne did

but he has recently moved to Texas. Yes, they are wanting to do the stretch and

Botox together.

Shamira

From: Carolyn <wooleeacre@...>

achalasia

Sent: Tuesday, August 2, 2011 12:59 PM

Subject: 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..   "   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]

As I've said before on the boards, I know next to nothing about american health

care and dealing with insurance companies, but doesn't it seem like there IS

simply no one available in your state who is qualified on paper to treat her

properly, given her extensive history of NOT having gotten better?  I don't

know how far you've looked into going to a QUALIFIED doctor to deal with

Taniea's issues, but she needs a SPECIALIST, not just some doctor who is

shooting darts at a board and hoping something finally sticks.  I know that

Carolyn gave you some names and direction previously, and I really hope that you

can find her someone that truly can help her... she's too young to have to deal

with all this

kim in canada

________________________________

From: Shamira <shareedanieal@...>

" achalasia " <achalasia >

Sent: Tuesday, August 2, 2011 5:46 PM

Subject: Re: (Carolyn) Taniea's proposed treatment plan

 

Ok sorry about that. As I stated in the previous email we are Native American

and Indian Health Services pay for the medical cost outside of the insurance.

They will not approve her to go out of state with out them seeing that there is

simply no one available in Oklahoma who is qualified on paper to treat her

properly.  This is what limits us.

I am not sure of the extent of Dr. Pelligrini's involvement in Taniea's

treatment and no he didn't perform  the original surgery. Dr. Ranne did

but he has recently moved to Texas. Yes, they are wanting to do the stretch and

Botox together.

Shamira

From: Carolyn <wooleeacre@...>

achalasia

Sent: Tuesday, August 2, 2011 12:59 PM

Subject: 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..   "   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