clinical trial

[biz]

hey dana i know just what u mean about doing this 3 times a day with aidan he does his chest pt with inhalers twice a day now so im going to have to add the denefosul in the middle of that at least it will be with out the vest and just by itself. im glad to hear it replaces the hypertonic. aidan did well with it but every time i got him up to 5% he would get a sore throat and raspy voice. so i had to stop it. aidan doest do pft's yet. but apparently on our next visit the doc is introducing a new this for the little ones. its similar to pft's but they dont have to blow out and keep on with it. i hold his cheecks and he breathes regularfor it. im guessing its a resting pft? then on the next visit do it again and so on and they can compare results that way. so maybe we will do it in the trial also. they didnt say anything about drawing blood i was told just vitals to make sure he isnt having some reaction to it.
<br />
<br />do you ever know if u got the placebo or not?
<br />-------------------------------------
<br />Elizabeth

 

[ToriMom]

We had friends try this drug on a clinical trial and they had GREAT feedback about it. She told us that if we ever had a chance to get on it through our clinic that we should JUMP ON IT WITHOUT HESITATION as she noticed a real difference in her daughter's lung function. I think they had the "mystery" period on it and then the real medicine afterwards. This mom could not say enough good things about it! Even though it did add about an hour (15-20 min 3 times a day) to her treatments, she said she was very sad when the trial ended. I think this says a lot about how much she loved the effects of this drug...increased PFTs and better energy, etc.
Just wanted to pass on her experience. Sorry I don't know much more.
Best of Luck,
Michelle, mom to Tori (CF, 9 years old, G-tube)

 

[ToriMom]

We had friends try this drug on a clinical trial and they had GREAT feedback about it. She told us that if we ever had a chance to get on it through our clinic that we should JUMP ON IT WITHOUT HESITATION as she noticed a real difference in her daughter's lung function. I think they had the "mystery" period on it and then the real medicine afterwards. This mom could not say enough good things about it! Even though it did add about an hour (15-20 min 3 times a day) to her treatments, she said she was very sad when the trial ended. I think this says a lot about how much she loved the effects of this drug...increased PFTs and better energy, etc.
Just wanted to pass on her experience. Sorry I don't know much more.
Best of Luck,
Michelle, mom to Tori (CF, 9 years old, G-tube)

 

[ToriMom]

We had friends try this drug on a clinical trial and they had GREAT feedback about it. She told us that if we ever had a chance to get on it through our clinic that we should JUMP ON IT WITHOUT HESITATION as she noticed a real difference in her daughter's lung function. I think they had the "mystery" period on it and then the real medicine afterwards. This mom could not say enough good things about it! Even though it did add about an hour (15-20 min 3 times a day) to her treatments, she said she was very sad when the trial ended. I think this says a lot about how much she loved the effects of this drug...increased PFTs and better energy, etc.
<br />Just wanted to pass on her experience. Sorry I don't know much more.
<br />Best of Luck,
<br />Michelle, mom to Tori (CF, 9 years old, G-tube)
<br />

 

[Mammahuff]

Austin has been doing the Tiger II Study as well. Like the others have said the first time we did not know if he was on the placebo or the real drug. We have extended into the next phase and he is doing the denufosol.

I am thinking he was doing placebo the first time. He had a few times where his pfts had really dropped. But since starting the actual drug things have been going well.

And like the others have said the downside is the blood draws and doing the actual treatments 3 times a day instead of his normal two times. It is becoming a habit though now doing nebs three times daily.

 

[Mammahuff]

Austin has been doing the Tiger II Study as well. Like the others have said the first time we did not know if he was on the placebo or the real drug. We have extended into the next phase and he is doing the denufosol.

I am thinking he was doing placebo the first time. He had a few times where his pfts had really dropped. But since starting the actual drug things have been going well.

And like the others have said the downside is the blood draws and doing the actual treatments 3 times a day instead of his normal two times. It is becoming a habit though now doing nebs three times daily.

 

[Mammahuff]

Austin has been doing the Tiger II Study as well. Like the others have said the first time we did not know if he was on the placebo or the real drug. We have extended into the next phase and he is doing the denufosol.
<br />
<br />I am thinking he was doing placebo the first time. He had a few times where his pfts had really dropped. But since starting the actual drug things have been going well.
<br />
<br />And like the others have said the downside is the blood draws and doing the actual treatments 3 times a day instead of his normal two times. It is becoming a habit though now doing nebs three times daily.