Kutipressin question/thought

[Guest guest]

Here's something I've been thinking about lately:

It seems to me that a lot of our kids who really took off in the

early stages of the protocol have hit a plateau of sorts. My son

would fit this description.

I am quite sure that if Kutipressin was still available, my son would

be on it. But, of course, he's not.

From the parents with whom I've spoken, Kutipressin seemed to have

been an extremely effective drug for many kids, even ones who didn't

respond to much else. Yet it's gone ... apparently forever.

So my question is this: How many of the kids who are stagnating on

the protocol or progressing very slowly would have been doing

much, much better if Kutipressin was still available.

I know Dr. Goldberg talks a lot about " new agents " he is hoping to

have sometime. But the fact is that he is actually working with one

less agent than he had not long ago.

Does that not seem significant?

I'm curious if anyone else has had these thougths.

Dave

[Guest guest]

I personally have wondered why some of the immune system suppressants used

with transplant patients are not considered.

---- Original Message -----

From: " kevbaby99 " <dnaylor99@...>

< >

Sent: Friday, August 13, 2004 3:31 PM

Subject: Kutipressin question/thought

>

> Here's something I've been thinking about lately:

>

> It seems to me that a lot of our kids who really took off in the

> early stages of the protocol have hit a plateau of sorts. My son

> would fit this description.

>

> I am quite sure that if Kutipressin was still available, my son would

> be on it. But, of course, he's not.

>

> From the parents with whom I've spoken, Kutipressin seemed to have

> been an extremely effective drug for many kids, even ones who didn't

> respond to much else. Yet it's gone ... apparently forever.

>

> So my question is this: How many of the kids who are stagnating on

> the protocol or progressing very slowly would have been doing

> much, much better if Kutipressin was still available.

>

> I know Dr. Goldberg talks a lot about " new agents " he is hoping to

> have sometime. But the fact is that he is actually working with one

> less agent than he had not long ago.

>

> Does that not seem significant?

>

> I'm curious if anyone else has had these thougths.

>

> Dave

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

[Guest guest]

I believe they are steroid based, which would not be

good for our nids kids.

Does anyone know why no drug company is willing to

make kutapressin any more? It just doesn't make

sense, if there is a demand for it, why will noone

provide it? Barb

--- Shirley Mooney <samm0079@...> wrote:

> I personally have wondered why some of the immune

> system suppressants used

> with transplant patients are not considered.

> ---- Original Message -----

> From: " kevbaby99 " <dnaylor99@...>

> < >

> Sent: Friday, August 13, 2004 3:31 PM

> Subject: Kutipressin question/thought

>

>

> >

> > Here's something I've been thinking about lately:

> >

> > It seems to me that a lot of our kids who really

> took off in the

> > early stages of the protocol have hit a

> plateau of sorts. My son

> > would fit this description.

> >

> > I am quite sure that if Kutipressin was still

> available, my son would

> > be on it. But, of course, he's not.

> >

> > From the parents with whom I've spoken,

> Kutipressin seemed to have

> > been an extremely effective drug for many kids,

> even ones who didn't

> > respond to much else. Yet it's gone ... apparently

> forever.

> >

> > So my question is this: How many of the kids who

> are stagnating on

> > the protocol or progressing very slowly would

> have been doing

> > much, much better if Kutipressin was still

> available.

> >

> > I know Dr. Goldberg talks a lot about " new agents "

> he is hoping to

> > have sometime. But the fact is that he is actually

> working with one

> > less agent than he had not long ago.

> >

> > Does that not seem significant?

> >

> > I'm curious if anyone else has had these thougths.

> >

> > Dave

> >

> >

> >

> >

> >

> > Responsibility for the content of this message

> lies strictly with

> > the original author(s), and is not necessarily

> endorsed by or the

> > opinion of the Research Institute.

> >

> >

[Guest guest]

This is our thought exactly and we agree with you. Kutapressin has been very

helpful for our son.

Stefanie and in Singapore

Kutipressin question/thought

Here's something I've been thinking about lately:

It seems to me that a lot of our kids who really took off in the

early stages of the protocol have hit a plateau of sorts. My son

would fit this description.

I am quite sure that if Kutipressin was still available, my son would

be on it. But, of course, he's not.

From the parents with whom I've spoken, Kutipressin seemed to have

been an extremely effective drug for many kids, even ones who didn't

respond to much else. Yet it's gone ... apparently forever.

So my question is this: How many of the kids who are stagnating on

the protocol or progressing very slowly would have been doing

much, much better if Kutipressin was still available.

I know Dr. Goldberg talks a lot about " new agents " he is hoping to

have sometime. But the fact is that he is actually working with one

less agent than he had not long ago.

Does that not seem significant?

I'm curious if anyone else has had these thougths.

Dave

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.