Is anyone participatingin any studies?

jdprecious · Jul 16, 2007

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.

jdprecious · Jul 16, 2007

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.

jdprecious · Jul 16, 2007

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.

jdprecious · Jul 16, 2007

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.

tammykrumrey · Jul 16, 2007

My daughters are in the EPIC study as well. Well, one is in the intitial phase, still never culturing PA. The younger daughter has progressed in the study last fall, after her first PA culture. She was on culture basis, so she cultured PA two times, and both times followed with Tobi and Cipro/placebo. After the second round, cultures have been clear of PA. It has been about 9 months now.

Both girls are in a sibling/genetic study, which is basically just observation after the initial blood work on them and me.

We have not been asked to do other studies at this time, but would still consider them when they are available. My husband doesn't necessarily agree with me letting them participate in the studies...he doesn't like his girls being guinea pigs. But he leaves the decision up to me and the girls. But I do understand how important it is to get involved for the future of all CF patients, so therefore, as long as my girls are in no danger, and the study isn't painful, I will consider it.

tammykrumrey · Jul 16, 2007

My daughters are in the EPIC study as well. Well, one is in the intitial phase, still never culturing PA. The younger daughter has progressed in the study last fall, after her first PA culture. She was on culture basis, so she cultured PA two times, and both times followed with Tobi and Cipro/placebo. After the second round, cultures have been clear of PA. It has been about 9 months now.

Both girls are in a sibling/genetic study, which is basically just observation after the initial blood work on them and me.

We have not been asked to do other studies at this time, but would still consider them when they are available. My husband doesn't necessarily agree with me letting them participate in the studies...he doesn't like his girls being guinea pigs. But he leaves the decision up to me and the girls. But I do understand how important it is to get involved for the future of all CF patients, so therefore, as long as my girls are in no danger, and the study isn't painful, I will consider it.

tammykrumrey · Jul 16, 2007

My daughters are in the EPIC study as well. Well, one is in the intitial phase, still never culturing PA. The younger daughter has progressed in the study last fall, after her first PA culture. She was on culture basis, so she cultured PA two times, and both times followed with Tobi and Cipro/placebo. After the second round, cultures have been clear of PA. It has been about 9 months now.

Both girls are in a sibling/genetic study, which is basically just observation after the initial blood work on them and me.

We have not been asked to do other studies at this time, but would still consider them when they are available. My husband doesn't necessarily agree with me letting them participate in the studies...he doesn't like his girls being guinea pigs. But he leaves the decision up to me and the girls. But I do understand how important it is to get involved for the future of all CF patients, so therefore, as long as my girls are in no danger, and the study isn't painful, I will consider it.

tammykrumrey · Jul 16, 2007

My daughters are in the EPIC study as well. Well, one is in the intitial phase, still never culturing PA. The younger daughter has progressed in the study last fall, after her first PA culture. She was on culture basis, so she cultured PA two times, and both times followed with Tobi and Cipro/placebo. After the second round, cultures have been clear of PA. It has been about 9 months now.

Both girls are in a sibling/genetic study, which is basically just observation after the initial blood work on them and me.

We have not been asked to do other studies at this time, but would still consider them when they are available. My husband doesn't necessarily agree with me letting them participate in the studies...he doesn't like his girls being guinea pigs. But he leaves the decision up to me and the girls. But I do understand how important it is to get involved for the future of all CF patients, so therefore, as long as my girls are in no danger, and the study isn't painful, I will consider it.

tammykrumrey · Jul 16, 2007

My daughters are in the EPIC study as well. Well, one is in the intitial phase, still never culturing PA. The younger daughter has progressed in the study last fall, after her first PA culture. She was on culture basis, so she cultured PA two times, and both times followed with Tobi and Cipro/placebo. After the second round, cultures have been clear of PA. It has been about 9 months now.

Both girls are in a sibling/genetic study, which is basically just observation after the initial blood work on them and me.

We have not been asked to do other studies at this time, but would still consider them when they are available. My husband doesn't necessarily agree with me letting them participate in the studies...he doesn't like his girls being guinea pigs. But he leaves the decision up to me and the girls. But I do understand how important it is to get involved for the future of all CF patients, so therefore, as long as my girls are in no danger, and the study isn't painful, I will consider it.

tammykrumrey · Jul 16, 2007

My daughters are in the EPIC study as well. Well, one is in the intitial phase, still never culturing PA. The younger daughter has progressed in the study last fall, after her first PA culture. She was on culture basis, so she cultured PA two times, and both times followed with Tobi and Cipro/placebo. After the second round, cultures have been clear of PA. It has been about 9 months now.

Both girls are in a sibling/genetic study, which is basically just observation after the initial blood work on them and me.

We have not been asked to do other studies at this time, but would still consider them when they are available. My husband doesn't necessarily agree with me letting them participate in the studies...he doesn't like his girls being guinea pigs. But he leaves the decision up to me and the girls. But I do understand how important it is to get involved for the future of all CF patients, so therefore, as long as my girls are in no danger, and the study isn't painful, I will consider it.

Darinsmom · Jul 16, 2007