Has anyone done the ISIS trial?

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grammakaky

New member
She does cough when she first starts; but we also cough with her to let her know that is what she is to do. She as gone from Feb without any lung problems; so we keep our fingers crossed. If she starts with a sign of a cold, they up her treatments. We definetly think the hypertonic is good for her.
 
G

grammakaky

New member
She does cough when she first starts; but we also cough with her to let her know that is what she is to do. She as gone from Feb without any lung problems; so we keep our fingers crossed. If she starts with a sign of a cold, they up her treatments. We definetly think the hypertonic is good for her.
 
G

grammakaky

New member
She does cough when she first starts; but we also cough with her to let her know that is what she is to do. She as gone from Feb without any lung problems; so we keep our fingers crossed. If she starts with a sign of a cold, they up her treatments. We definetly think the hypertonic is good for her.
 
G

grammakaky

New member
She does cough when she first starts; but we also cough with her to let her know that is what she is to do. She as gone from Feb without any lung problems; so we keep our fingers crossed. If she starts with a sign of a cold, they up her treatments. We definetly think the hypertonic is good for her.
 
G

grammakaky

New member
She does cough when she first starts; but we also cough with her to let her know that is what she is to do. She as gone from Feb without any lung problems; so we keep our fingers crossed. If she starts with a sign of a cold, they up her treatments. We definetly think the hypertonic is good for her.
 
R

reagansmom

New member
My daughter has been on Hypertonic Saline since around 16 months. She was asked to do the ISIS study by her clinic, but I refuse take her off it. It's a blind study, so we wouldn't know if she were getting the HS or placebo. I saw a bigger difference in Reagan starting HS than when she began the Pulmozyme.
Reagan will tend to cough a couple of times during her HS treatment, but she generally doesn't cough much throughout the day. I haven't seen any adverse reactions to this treatment at all, and am fairly certain that the ISIS study will show it to be safe and beneficial.
And yes, my daughter does have lung issues partly due to being diagnosed late and not benefiting from preventative treatment. We don't know her baseline because she is too big for the Infant PFTs and too little for reg. PFTs.
 
R

reagansmom

New member
My daughter has been on Hypertonic Saline since around 16 months. She was asked to do the ISIS study by her clinic, but I refuse take her off it. It's a blind study, so we wouldn't know if she were getting the HS or placebo. I saw a bigger difference in Reagan starting HS than when she began the Pulmozyme.
Reagan will tend to cough a couple of times during her HS treatment, but she generally doesn't cough much throughout the day. I haven't seen any adverse reactions to this treatment at all, and am fairly certain that the ISIS study will show it to be safe and beneficial.
And yes, my daughter does have lung issues partly due to being diagnosed late and not benefiting from preventative treatment. We don't know her baseline because she is too big for the Infant PFTs and too little for reg. PFTs.
 
R

reagansmom

New member
My daughter has been on Hypertonic Saline since around 16 months. She was asked to do the ISIS study by her clinic, but I refuse take her off it. It's a blind study, so we wouldn't know if she were getting the HS or placebo. I saw a bigger difference in Reagan starting HS than when she began the Pulmozyme.
Reagan will tend to cough a couple of times during her HS treatment, but she generally doesn't cough much throughout the day. I haven't seen any adverse reactions to this treatment at all, and am fairly certain that the ISIS study will show it to be safe and beneficial.
And yes, my daughter does have lung issues partly due to being diagnosed late and not benefiting from preventative treatment. We don't know her baseline because she is too big for the Infant PFTs and too little for reg. PFTs.
 
R

reagansmom

New member
My daughter has been on Hypertonic Saline since around 16 months. She was asked to do the ISIS study by her clinic, but I refuse take her off it. It's a blind study, so we wouldn't know if she were getting the HS or placebo. I saw a bigger difference in Reagan starting HS than when she began the Pulmozyme.
Reagan will tend to cough a couple of times during her HS treatment, but she generally doesn't cough much throughout the day. I haven't seen any adverse reactions to this treatment at all, and am fairly certain that the ISIS study will show it to be safe and beneficial.
And yes, my daughter does have lung issues partly due to being diagnosed late and not benefiting from preventative treatment. We don't know her baseline because she is too big for the Infant PFTs and too little for reg. PFTs.
 
R

reagansmom

New member
My daughter has been on Hypertonic Saline since around 16 months. She was asked to do the ISIS study by her clinic, but I refuse take her off it. It's a blind study, so we wouldn't know if she were getting the HS or placebo. I saw a bigger difference in Reagan starting HS than when she began the Pulmozyme.
<br />Reagan will tend to cough a couple of times during her HS treatment, but she generally doesn't cough much throughout the day. I haven't seen any adverse reactions to this treatment at all, and am fairly certain that the ISIS study will show it to be safe and beneficial.
<br />And yes, my daughter does have lung issues partly due to being diagnosed late and not benefiting from preventative treatment. We don't know her baseline because she is too big for the Infant PFTs and too little for reg. PFTs.
 
M

mariahsmommy

New member
Thank you all for the info. I am just trying to make an informed decision. When we went to the DR. last I asked him what he thought about NAC (oral and inhaled) and he didn't adivse either. He said they have done studies with inhaled NAC where the tx stripped the cilia from the trachea. So of course this makes me extremely nervouse for her to inhale anything. I still haven't talked with them thought about the hypertonic saline.

Felicia
 
M

mariahsmommy

New member
Thank you all for the info. I am just trying to make an informed decision. When we went to the DR. last I asked him what he thought about NAC (oral and inhaled) and he didn't adivse either. He said they have done studies with inhaled NAC where the tx stripped the cilia from the trachea. So of course this makes me extremely nervouse for her to inhale anything. I still haven't talked with them thought about the hypertonic saline.

Felicia
 
M

mariahsmommy

New member
Thank you all for the info. I am just trying to make an informed decision. When we went to the DR. last I asked him what he thought about NAC (oral and inhaled) and he didn't adivse either. He said they have done studies with inhaled NAC where the tx stripped the cilia from the trachea. So of course this makes me extremely nervouse for her to inhale anything. I still haven't talked with them thought about the hypertonic saline.

Felicia
 
M

mariahsmommy

New member
Thank you all for the info. I am just trying to make an informed decision. When we went to the DR. last I asked him what he thought about NAC (oral and inhaled) and he didn't adivse either. He said they have done studies with inhaled NAC where the tx stripped the cilia from the trachea. So of course this makes me extremely nervouse for her to inhale anything. I still haven't talked with them thought about the hypertonic saline.

Felicia
 
M

mariahsmommy

New member
Thank you all for the info. I am just trying to make an informed decision. When we went to the DR. last I asked him what he thought about NAC (oral and inhaled) and he didn't adivse either. He said they have done studies with inhaled NAC where the tx stripped the cilia from the trachea. So of course this makes me extremely nervouse for her to inhale anything. I still haven't talked with them thought about the hypertonic saline.
<br />
<br />Felicia
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

I am so glad to hear she is doing better. Thank the Lord for medicines. Hopefully this hypertonic saline will work for our daughter's it is so exciting yet scary. It is hard to use your child as a guinea pig. I am just waiting to hear back from her Dr. because I wanted to know how they felt about it.</end quote></div>

My husband and I grappled with this same emotion before putting our DD on hypertonic saline. We wanted her to try it because of it's possible (and likely) benefits, but were very uneasy about enrolling her in a "clinical trial." She is not a guinea pig. And we also realized that if it were not for the children before her - whose parents bravely enrolled them in trials - many of the drugs we have now would not be available. We would still be looking at a very short life for our children.

At the same time, if you have never had your child on nebs, it may be even more overwhelming and emotional. I can remember the emotions I had when I put the first spoonful of enzymes in my baby's mouth and the first time I had to setup nebs at home. For me, it made CF that much more real and it was scary.

I don't believe that there is a right or wrong answer here. I think that if you choose to have your DD do a clinical trial, make sure that it is something you are comfortable with. And if you choose not to, I am sure there will be plenty of opportunities in the future for you to decide again. Does this fit in our life? Do I feel comfortable with it? Do I want to do this? Only you can answer those questions.

Good luck.
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

I am so glad to hear she is doing better. Thank the Lord for medicines. Hopefully this hypertonic saline will work for our daughter's it is so exciting yet scary. It is hard to use your child as a guinea pig. I am just waiting to hear back from her Dr. because I wanted to know how they felt about it.</end quote></div>

My husband and I grappled with this same emotion before putting our DD on hypertonic saline. We wanted her to try it because of it's possible (and likely) benefits, but were very uneasy about enrolling her in a "clinical trial." She is not a guinea pig. And we also realized that if it were not for the children before her - whose parents bravely enrolled them in trials - many of the drugs we have now would not be available. We would still be looking at a very short life for our children.

At the same time, if you have never had your child on nebs, it may be even more overwhelming and emotional. I can remember the emotions I had when I put the first spoonful of enzymes in my baby's mouth and the first time I had to setup nebs at home. For me, it made CF that much more real and it was scary.

I don't believe that there is a right or wrong answer here. I think that if you choose to have your DD do a clinical trial, make sure that it is something you are comfortable with. And if you choose not to, I am sure there will be plenty of opportunities in the future for you to decide again. Does this fit in our life? Do I feel comfortable with it? Do I want to do this? Only you can answer those questions.

Good luck.
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

I am so glad to hear she is doing better. Thank the Lord for medicines. Hopefully this hypertonic saline will work for our daughter's it is so exciting yet scary. It is hard to use your child as a guinea pig. I am just waiting to hear back from her Dr. because I wanted to know how they felt about it.</end quote></div>

My husband and I grappled with this same emotion before putting our DD on hypertonic saline. We wanted her to try it because of it's possible (and likely) benefits, but were very uneasy about enrolling her in a "clinical trial." She is not a guinea pig. And we also realized that if it were not for the children before her - whose parents bravely enrolled them in trials - many of the drugs we have now would not be available. We would still be looking at a very short life for our children.

At the same time, if you have never had your child on nebs, it may be even more overwhelming and emotional. I can remember the emotions I had when I put the first spoonful of enzymes in my baby's mouth and the first time I had to setup nebs at home. For me, it made CF that much more real and it was scary.

I don't believe that there is a right or wrong answer here. I think that if you choose to have your DD do a clinical trial, make sure that it is something you are comfortable with. And if you choose not to, I am sure there will be plenty of opportunities in the future for you to decide again. Does this fit in our life? Do I feel comfortable with it? Do I want to do this? Only you can answer those questions.

Good luck.
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

I am so glad to hear she is doing better. Thank the Lord for medicines. Hopefully this hypertonic saline will work for our daughter's it is so exciting yet scary. It is hard to use your child as a guinea pig. I am just waiting to hear back from her Dr. because I wanted to know how they felt about it.</end quote>

My husband and I grappled with this same emotion before putting our DD on hypertonic saline. We wanted her to try it because of it's possible (and likely) benefits, but were very uneasy about enrolling her in a "clinical trial." She is not a guinea pig. And we also realized that if it were not for the children before her - whose parents bravely enrolled them in trials - many of the drugs we have now would not be available. We would still be looking at a very short life for our children.

At the same time, if you have never had your child on nebs, it may be even more overwhelming and emotional. I can remember the emotions I had when I put the first spoonful of enzymes in my baby's mouth and the first time I had to setup nebs at home. For me, it made CF that much more real and it was scary.

I don't believe that there is a right or wrong answer here. I think that if you choose to have your DD do a clinical trial, make sure that it is something you are comfortable with. And if you choose not to, I am sure there will be plenty of opportunities in the future for you to decide again. Does this fit in our life? Do I feel comfortable with it? Do I want to do this? Only you can answer those questions.

Good luck.
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>
<br />
<br />I am so glad to hear she is doing better. Thank the Lord for medicines. Hopefully this hypertonic saline will work for our daughter's it is so exciting yet scary. It is hard to use your child as a guinea pig. I am just waiting to hear back from her Dr. because I wanted to know how they felt about it.</end quote>
<br />
<br />My husband and I grappled with this same emotion before putting our DD on hypertonic saline. We wanted her to try it because of it's possible (and likely) benefits, but were very uneasy about enrolling her in a "clinical trial." She is not a guinea pig. And we also realized that if it were not for the children before her - whose parents bravely enrolled them in trials - many of the drugs we have now would not be available. We would still be looking at a very short life for our children.
<br />
<br />At the same time, if you have never had your child on nebs, it may be even more overwhelming and emotional. I can remember the emotions I had when I put the first spoonful of enzymes in my baby's mouth and the first time I had to setup nebs at home. For me, it made CF that much more real and it was scary.
<br />
<br />I don't believe that there is a right or wrong answer here. I think that if you choose to have your DD do a clinical trial, make sure that it is something you are comfortable with. And if you choose not to, I am sure there will be plenty of opportunities in the future for you to decide again. Does this fit in our life? Do I feel comfortable with it? Do I want to do this? Only you can answer those questions.
<br />
<br />Good luck.
 
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