Is anyone participatingin any studies?

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pnhuffman

New member
Is anyone participating in any studies. Austin is participating in a FUN STudy. It's a nutrtional study. We just keep diaries of his meals. And i have learned a lot from it. I did not know about needing the extra calories and such. It is a 18 month study. We are meeting on July 24 to do the weights and measurements again. He started out at 47 lbs. and when he went last week to the pediatrician he weighed 50 lbs.

He also participated in a study. Dont quite know the name of it but all it consisted of was a very intense CT scan of his lungs. And he will go back in I think 18 mos for that. Also he is in a EPIC study. Reallly not quite sure what that was. All I know is when he goes every three months to see his Pulmonary docotr I answer this questionairre. Just about 5 questionss about his cough.
 
P

pnhuffman

New member
Is anyone participating in any studies. Austin is participating in a FUN STudy. It's a nutrtional study. We just keep diaries of his meals. And i have learned a lot from it. I did not know about needing the extra calories and such. It is a 18 month study. We are meeting on July 24 to do the weights and measurements again. He started out at 47 lbs. and when he went last week to the pediatrician he weighed 50 lbs.

He also participated in a study. Dont quite know the name of it but all it consisted of was a very intense CT scan of his lungs. And he will go back in I think 18 mos for that. Also he is in a EPIC study. Reallly not quite sure what that was. All I know is when he goes every three months to see his Pulmonary docotr I answer this questionairre. Just about 5 questionss about his cough.
 
P

pnhuffman

New member
Is anyone participating in any studies. Austin is participating in a FUN STudy. It's a nutrtional study. We just keep diaries of his meals. And i have learned a lot from it. I did not know about needing the extra calories and such. It is a 18 month study. We are meeting on July 24 to do the weights and measurements again. He started out at 47 lbs. and when he went last week to the pediatrician he weighed 50 lbs.

He also participated in a study. Dont quite know the name of it but all it consisted of was a very intense CT scan of his lungs. And he will go back in I think 18 mos for that. Also he is in a EPIC study. Reallly not quite sure what that was. All I know is when he goes every three months to see his Pulmonary docotr I answer this questionairre. Just about 5 questionss about his cough.
 
P

pnhuffman

New member
Is anyone participating in any studies. Austin is participating in a FUN STudy. It's a nutrtional study. We just keep diaries of his meals. And i have learned a lot from it. I did not know about needing the extra calories and such. It is a 18 month study. We are meeting on July 24 to do the weights and measurements again. He started out at 47 lbs. and when he went last week to the pediatrician he weighed 50 lbs.

He also participated in a study. Dont quite know the name of it but all it consisted of was a very intense CT scan of his lungs. And he will go back in I think 18 mos for that. Also he is in a EPIC study. Reallly not quite sure what that was. All I know is when he goes every three months to see his Pulmonary docotr I answer this questionairre. Just about 5 questionss about his cough.
 
P

pnhuffman

New member
Is anyone participating in any studies. Austin is participating in a FUN STudy. It's a nutrtional study. We just keep diaries of his meals. And i have learned a lot from it. I did not know about needing the extra calories and such. It is a 18 month study. We are meeting on July 24 to do the weights and measurements again. He started out at 47 lbs. and when he went last week to the pediatrician he weighed 50 lbs.

He also participated in a study. Dont quite know the name of it but all it consisted of was a very intense CT scan of his lungs. And he will go back in I think 18 mos for that. Also he is in a EPIC study. Reallly not quite sure what that was. All I know is when he goes every three months to see his Pulmonary docotr I answer this questionairre. Just about 5 questionss about his cough.
 
P

pnhuffman

New member
Is anyone participating in any studies. Austin is participating in a FUN STudy. It's a nutrtional study. We just keep diaries of his meals. And i have learned a lot from it. I did not know about needing the extra calories and such. It is a 18 month study. We are meeting on July 24 to do the weights and measurements again. He started out at 47 lbs. and when he went last week to the pediatrician he weighed 50 lbs.

He also participated in a study. Dont quite know the name of it but all it consisted of was a very intense CT scan of his lungs. And he will go back in I think 18 mos for that. Also he is in a EPIC study. Reallly not quite sure what that was. All I know is when he goes every three months to see his Pulmonary docotr I answer this questionairre. Just about 5 questionss about his cough.
 
S

SEANP

New member
Yes,
My son is in the Denufosol Trials. Involves taking the medication by nebulizer 3 times a day on top of what he regularly takes.
Sean
 
S

SEANP

New member
Yes,
My son is in the Denufosol Trials. Involves taking the medication by nebulizer 3 times a day on top of what he regularly takes.
Sean
 
S

SEANP

New member
Yes,
My son is in the Denufosol Trials. Involves taking the medication by nebulizer 3 times a day on top of what he regularly takes.
Sean
 
S

SEANP

New member
Yes,
My son is in the Denufosol Trials. Involves taking the medication by nebulizer 3 times a day on top of what he regularly takes.
Sean
 
S

SEANP

New member
Yes,
My son is in the Denufosol Trials. Involves taking the medication by nebulizer 3 times a day on top of what he regularly takes.
Sean
 
S

SEANP

New member
Yes,
My son is in the Denufosol Trials. Involves taking the medication by nebulizer 3 times a day on top of what he regularly takes.
Sean
 
M

mommy2cass

New member
My daughter is in the EPIC study. Early PA treatment. She cultured PA last spring and did one round of Tobi and Cipro or Placebo. All her cultures have been clear since then. She will have her last visit in Sept. Yay! Then we will just wait till the next study she can partipate in.
 
M

mommy2cass

New member
My daughter is in the EPIC study. Early PA treatment. She cultured PA last spring and did one round of Tobi and Cipro or Placebo. All her cultures have been clear since then. She will have her last visit in Sept. Yay! Then we will just wait till the next study she can partipate in.
 
M

mommy2cass

New member
My daughter is in the EPIC study. Early PA treatment. She cultured PA last spring and did one round of Tobi and Cipro or Placebo. All her cultures have been clear since then. She will have her last visit in Sept. Yay! Then we will just wait till the next study she can partipate in.
 
M

mommy2cass

New member
My daughter is in the EPIC study. Early PA treatment. She cultured PA last spring and did one round of Tobi and Cipro or Placebo. All her cultures have been clear since then. She will have her last visit in Sept. Yay! Then we will just wait till the next study she can partipate in.
 
M

mommy2cass

New member
My daughter is in the EPIC study. Early PA treatment. She cultured PA last spring and did one round of Tobi and Cipro or Placebo. All her cultures have been clear since then. She will have her last visit in Sept. Yay! Then we will just wait till the next study she can partipate in.
 
M

mommy2cass

New member
My daughter is in the EPIC study. Early PA treatment. She cultured PA last spring and did one round of Tobi and Cipro or Placebo. All her cultures have been clear since then. She will have her last visit in Sept. Yay! Then we will just wait till the next study she can partipate in.
 
J

jdprecious

New member
My daughter was also part of the Epic study. It is over now however and we have been enrolled in just trial observation until she turns 6 this December and can participate in more studies.

For 18 months, the entire length of the study, she had positive PA cultures. We were on Tobi and Cipro/Placebo one month on, two months off. I know for a fact that we were given Placebo bc the Cipro looked nothing like the Cipro we were given from our actual pharmacy. This stuff would seperate and look like playdoh in solution, it was very strange. I worried even giving it to her. But we never actually *found out* what group we were in. Her very last culture of the study was a negative one. She finally had a clean culture. It was such a relief. But given the length of time she cultured it , they still want to do a tune up on her just to eradicate any underlying issues.
 
J

jdprecious

New member
My daughter was also part of the Epic study. It is over now however and we have been enrolled in just trial observation until she turns 6 this December and can participate in more studies.

For 18 months, the entire length of the study, she had positive PA cultures. We were on Tobi and Cipro/Placebo one month on, two months off. I know for a fact that we were given Placebo bc the Cipro looked nothing like the Cipro we were given from our actual pharmacy. This stuff would seperate and look like playdoh in solution, it was very strange. I worried even giving it to her. But we never actually *found out* what group we were in. Her very last culture of the study was a negative one. She finally had a clean culture. It was such a relief. But given the length of time she cultured it , they still want to do a tune up on her just to eradicate any underlying issues.
 
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