Re: Re: Question about Gargle from eggs? Torsten

[Guest guest]

In a message dated 4/9/2003 2:26:32 AM Central Daylight Time,

Torstenkrafft@... writes:

>

> Hi Deb,

>

> nope, not available here too :-((

> To my knowledge it's still solely used in Sweden and I have no idea

> why it doesn't make it to the market despite the good results. If I

> remember it right then Chiron has bought a license for the US market

> four years ago, maybe your doc knows more about it.

>

> Thanks for the reminder, I'll try to contact the resarchers in Sweden

> to ask them what their plans are.

>

> Peace

> Torsten

Our doctor has talked to them about it and he said they had a company in the

USA that wanted to make the gargle but the company got sold so when the

doctor from Sweden approached them again about starting the company said they

could do it.

So he had to find another company to make the gargle. Our doctor said it will

be in studies in the states starting sometime this year but he said my

daughter would qualify because they are only going to us it on CF patients

that have not had psuedomonas yet (GO FIGURE!!) I can't understand there

logic on that but I guess they want to see if they never get pseudomonas. Our

doctor wrote to the doctor in Sweden to see if my oldest would be a good

candidate for this gargle and he agreed. So I guess the doctor is going to

see if the company would license us so we can get the product but our doctor

said it has to be a life or death situation like if she doesn't get it in a

month she will die which is not the case. But I don't want her to get

pseudomans in her lungs!! She has been culturing psuedomonas for the last

year in a half. So I am really wanting to get this if we can but it doesn't

look good. I just wonder if there was anyone on this group that is from

Sweden? Also are doctor talked about a new nebulizer? It supposedly works

faster then the other ones like it takes only 3 minutes to do the medication.

Have you heard of this too? Deb A

[Guest guest]

Hi Deb,

the reason why they will only give it to patients without PA is, that the

gargle works like a vaccine. It can prevent the onset of a pseudomonas

infection (at least that's what we all hope) but it can't do anything once

the pseudomonas has entered the lung.

Peace

Torsten, dad of Fiona 6wcf

e-mail: torstenkrafft@...

[Guest guest]

In a message dated 4/9/2003 3:52:02 PM Central Daylight Time,

Torstenkrafft@... writes:

> Hi Deb,

>

> the reason why they will only give it to patients without PA is, that the

> gargle works like a vaccine. It can prevent the onset of a pseudomonas

> infection (at least that's what we all hope) but it can't do anything once

> the pseudomonas has entered the lung.

>

> Peace

> Torsten, dad of Fiona 6wcf

Well, keeps culturing for psuedomonas but they don't think it is in

her lung yet at least the biopsy did show any. That is why he wants to get

her on it so it won't get in her lungs. With her having positive throat

cultures I am afraid she will. Deb A