Guest guest Posted November 8, 2003 Report Share Posted November 8, 2003 Hey all, I just wondered if anyone has read any articles on whether there is a correlation between the age of first culture of PA and the severity of the disease. Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 3 yrs. wocf, Matty 21 mos. Wcf and on inhaled Tobi for PA culture Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 Cheryl, I looked at a few older studies that did suggest that the kids that cultured Pa early didn't do as well - BUT - I now have a better understanding of why it seemed to look like more of a correlation. I think that it's just because Pa is one of the main trouble makers for CF'rs and they didn't have a lot of the knowledge or tools that we have now. Basically the simple fact that they weren't able to eradicate intermittent Pa or manage mucoid Pa as well as they do now made these subjects suffer problems sooner than those who didn't culture it as early. Some say it is the difference in the mucous, that some is more hospitable to it than others while others say getting it is just the luck of the draw. I have heard from quite a few that cultured it early but weren't colonized with the mucoid variant until much later. I talked a long time to a CF doctor who is in my family about this subject and he was very reassuring about it. He said that even if our Abby did culture some mucoid Pa that it wasn't such a huge deal these days. Abby cultured Pa from a bronch when she was diagnosed at 5 mos. old, was treated aggressively with IV tobra, timentin and Tobi for 2 weeks. Her throat culture was clear at discharge. She had one clear culture 3 mos. later then after 3 more mos. she cultured it again. We did 2 weeks Tobi and Cipro. At the end of that course she cultured it again. They then performed a bronch a few days later which revealed she had no Pa in her lungs and they were very clear with hardly any inflammation. A small amount of Pa was obviously in her upper airways causing the positive culture. We just had a culture done Friday and are awaiting the results. She is completely asymptomatic now - no cough, wheeze and in 97th percentile in wt. 90th in ht. If she cultures it this time I may try to get her doctor to put her on an azithromycin regimen. Maybe go for a full blown IV course. I'm not sure. There are differing schools of thought on this. They do know that it comes and goes at first normally then comes to stay. In Denmark they have demonstrated that they can eradicate intermittent non-mucoid Pa and can delay mucoid Pa by treating very aggressively with antibiotics - IV and inhaled. Ask your doc about the Danish model. This subject is one that has horrified us at first but have grown much more optimistic. Your post looks like one of mine verbatim a few months ago. This disease is in it's " short-rows " , which is an old farming expression meaning it is about finished. In the meantime, with good care, our kids are going to kick butt - Pa or no Pa. Don't fear it. Joe (Dad to 3 girls: Kelsi,7; Chloe 2 3/4 & Abby,15mos.w/cf and fat legs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 Joe, What a great response. Thank you. We all live in fear of Pa and other infections. I hope that you are right concerning CF being in it's short rows. Gale > Cheryl, > > I looked at a few older studies that did suggest that the kids that > cultured Pa early didn't do as well - BUT - I now have a better > understanding of why it seemed to look like more of a correlation. I > think that it's just because Pa is one of the main trouble makers for > CF'rs and they didn't have a lot of the knowledge or tools that we > have now. Basically the simple fact that they weren't able to > eradicate intermittent Pa or manage mucoid Pa as well as they do now > made these subjects suffer problems sooner than those who didn't > culture it as early. Some say it is the difference in the mucous, > that some is more hospitable to it than others while others say > getting it is just the luck of the draw. I have heard from quite a > few that cultured it early but weren't colonized with the mucoid > variant until much later. I talked a long time to a CF doctor who is > in my family about this subject and he was very reassuring about it. > He said that even if our Abby did culture some mucoid Pa that it > wasn't such a huge deal these days. > > Abby cultured Pa from a bronch when she was diagnosed at 5 mos. old, > was treated aggressively with IV tobra, timentin and Tobi for 2 > weeks. Her throat culture was clear at discharge. She had one clear > culture 3 mos. later then after 3 more mos. she cultured it again. > We did 2 weeks Tobi and Cipro. At the end of that course she > cultured it again. They then performed a bronch a few days later > which revealed she had no Pa in her lungs and they were very clear > with hardly any inflammation. A small amount of Pa was obviously in > her upper airways causing the positive culture. We just had a > culture done Friday and are awaiting the results. She is completely > asymptomatic now - no cough, wheeze and in 97th percentile in wt. > 90th in ht. > > If she cultures it this time I may try to get her doctor to put her > on an azithromycin regimen. Maybe go for a full blown IV course. > I'm not sure. There are differing schools of thought on this. They > do know that it comes and goes at first normally then comes to stay. > In Denmark they have demonstrated that they can eradicate > intermittent non-mucoid Pa and can delay mucoid Pa by treating very > aggressively with antibiotics - IV and inhaled. Ask your doc about > the Danish model. > > This subject is one that has horrified us at first but have grown > much more optimistic. Your post looks like one of mine verbatim a > few months ago. This disease is in it's " short-rows " , which is an > old farming expression meaning it is about finished. In the > meantime, with good care, our kids are going to kick butt - Pa or no > Pa. Don't fear it. > > Joe > (Dad to 3 girls: Kelsi,7; Chloe 2 3/4 & Abby,15mos.w/cf and fat legs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 Thanks so much Joe, We are at clinic this Friday, I assume they will do another culture. I guess I can expect the inhaled Tobi to continue for what, about 28 days? Seems to be the time period that I have read so much about here. I have to admit, I am terribly afraid of the future now that he has cultured PA. I am not in a good place these days. I had to take a leave from work due to stress. I had enough sick days banked to get thru til Jan. But it is going by so fast and I don't feel any better emotionally. But money needs to be made. I am so lost. Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 3 yrs. wocf, 21 mos. wcf Re: Severity of the disease Cheryl, I looked at a few older studies that did suggest that the kids that cultured Pa early didn't do as well - BUT - I now have a better understanding of why it seemed to look like more of a correlation. I think that it's just because Pa is one of the main trouble makers for CF'rs and they didn't have a lot of the knowledge or tools that we have now. Basically the simple fact that they weren't able to eradicate intermittent Pa or manage mucoid Pa as well as they do now made these subjects suffer problems sooner than those who didn't culture it as early. Some say it is the difference in the mucous, that some is more hospitable to it than others while others say getting it is just the luck of the draw. I have heard from quite a few that cultured it early but weren't colonized with the mucoid variant until much later. I talked a long time to a CF doctor who is in my family about this subject and he was very reassuring about it. He said that even if our Abby did culture some mucoid Pa that it wasn't such a huge deal these days. Abby cultured Pa from a bronch when she was diagnosed at 5 mos. old, was treated aggressively with IV tobra, timentin and Tobi for 2 weeks. Her throat culture was clear at discharge. She had one clear culture 3 mos. later then after 3 more mos. she cultured it again. We did 2 weeks Tobi and Cipro. At the end of that course she cultured it again. They then performed a bronch a few days later which revealed she had no Pa in her lungs and they were very clear with hardly any inflammation. A small amount of Pa was obviously in her upper airways causing the positive culture. We just had a culture done Friday and are awaiting the results. She is completely asymptomatic now - no cough, wheeze and in 97th percentile in wt. 90th in ht. If she cultures it this time I may try to get her doctor to put her on an azithromycin regimen. Maybe go for a full blown IV course. I'm not sure. There are differing schools of thought on this. They do know that it comes and goes at first normally then comes to stay. In Denmark they have demonstrated that they can eradicate intermittent non-mucoid Pa and can delay mucoid Pa by treating very aggressively with antibiotics - IV and inhaled. Ask your doc about the Danish model. This subject is one that has horrified us at first but have grown much more optimistic. Your post looks like one of mine verbatim a few months ago. This disease is in it's " short-rows " , which is an old farming expression meaning it is about finished. In the meantime, with good care, our kids are going to kick butt - Pa or no Pa. Don't fear it. Joe (Dad to 3 girls: Kelsi,7; Chloe 2 3/4 & Abby,15mos.w/cf and fat legs. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 Cheryl, I understand how you feel. E-mail me privately if you want. Zach is about Matty's age and just cultured PA. We have been on a nasty rollercoaster lately. About 3 weeks ago, our GI doc told us Zach was pancreatic sufficient and he could prove it with an elastase stool test. He was sure he would no longer need ADEK vitamins or enzymes. At the time Zach had only cultured staph and we were now being told he was pancreatic sufficient. We were on cloud nine. Well....last Monday we get a call from Zach's cf doc telling us Zach cultured PA and we would be starting inhaled TOBI. Today we got the news that the elastase test showed Zach is pancreatic insufficient. I guess I let myself believe everyone's assessment that Zach had a " mild " case because of his genotype. I feel like a fool. I know PA is not the end of the world but it is evidence that the disease is progressing. As I read other posts of kids doing 3 inhaled meds and CPT it sounds so overwhelming. Sara - mommy of Zach 21 months > Thanks so much Joe, > > We are at clinic this Friday, I assume they will do another culture. I > guess I can expect the inhaled Tobi to continue for what, about 28 days? > Seems to be the time period that I have read so much about here. > > I have to admit, I am terribly afraid of the future now that he has > cultured PA. I am not in a good place these days. I had to take a > leave from work due to stress. I had enough sick days banked to get > thru til Jan. But it is going by so fast and I don't feel any better > emotionally. But money needs to be made. I am so lost. > > Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 3 yrs. wocf, 21 > mos. wcf > > Re: Severity of the disease > > Cheryl, > > I looked at a few older studies that did suggest that the kids that > cultured Pa early didn't do as well - BUT - I now have a better > understanding of why it seemed to look like more of a correlation. I > think that it's just because Pa is one of the main trouble makers for > CF'rs and they didn't have a lot of the knowledge or tools that we > have now. Basically the simple fact that they weren't able to > eradicate intermittent Pa or manage mucoid Pa as well as they do now > made these subjects suffer problems sooner than those who didn't > culture it as early. Some say it is the difference in the mucous, > that some is more hospitable to it than others while others say > getting it is just the luck of the draw. I have heard from quite a > few that cultured it early but weren't colonized with the mucoid > variant until much later. I talked a long time to a CF doctor who is > in my family about this subject and he was very reassuring about it. > He said that even if our Abby did culture some mucoid Pa that it > wasn't such a huge deal these days. > > Abby cultured Pa from a bronch when she was diagnosed at 5 mos. old, > was treated aggressively with IV tobra, timentin and Tobi for 2 > weeks. Her throat culture was clear at discharge. She had one clear > culture 3 mos. later then after 3 more mos. she cultured it again. > We did 2 weeks Tobi and Cipro. At the end of that course she > cultured it again. They then performed a bronch a few days later > which revealed she had no Pa in her lungs and they were very clear > with hardly any inflammation. A small amount of Pa was obviously in > her upper airways causing the positive culture. We just had a > culture done Friday and are awaiting the results. She is completely > asymptomatic now - no cough, wheeze and in 97th percentile in wt. > 90th in ht. > > If she cultures it this time I may try to get her doctor to put her > on an azithromycin regimen. Maybe go for a full blown IV course. > I'm not sure. There are differing schools of thought on this. They > do know that it comes and goes at first normally then comes to stay. > In Denmark they have demonstrated that they can eradicate > intermittent non-mucoid Pa and can delay mucoid Pa by treating very > aggressively with antibiotics - IV and inhaled. Ask your doc about > the Danish model. > > This subject is one that has horrified us at first but have grown > much more optimistic. Your post looks like one of mine verbatim a > few months ago. This disease is in it's " short-rows " , which is an > old farming expression meaning it is about finished. In the > meantime, with good care, our kids are going to kick butt - Pa or no > Pa. Don't fear it. > > Joe > (Dad to 3 girls: Kelsi,7; Chloe 2 3/4 & Abby,15mos.w/cf and fat legs. > > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
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