Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 In a message dated 10/30/2002 2:28:27 AM Eastern Standard Time, smoneill@... writes: > can you guys tell me your own experience > > At what age did you or your child (ren) culture PAs? > = 6, Dylan 6 months and 6 - which is odd since contacted AFTER Dylan....... They all have Delta 508 and I can't think of the letters and # of the other one - its weird like my husband! Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hi , if you are interested in statistics, I have uploaded the 2001 CFF Patient Registry into the files section under " research " . Lots of statistics to compare Liam with. But the file has almost 2 MB, if you don't have a fast internet connection you can make yourself a cup of tea during the download :-)) Peace Torsten http://groups.yahoo.com/group/cfparents/files/Research% 20etc/2001cffPatientRegistry.pdf > can you guys tell me your own experience > > At what age did you or your child (ren) culture PAs? > > What is your mutation or your childs mutation? > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Torsen, Thank you for maintaining such good notes on CF research. I am still learning how to make full use of this web site. I will check out the " file " section to see what is there. Best Regards, Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Torsen, Thank you for maintaining such good notes on CF research. I am still learning how to make full use of this web site. I will check out the " file " section to see what is there. Best Regards, Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Wyatt has had PA's probably since he was about 3 years old but we didn't actually know till he was 4 years old. (I am almost 100% his doctors in California missed it) Wyatt has Delta F508 and Steve and I have never actually been tested. Christy > can you guys tell me your own experience > > At what age did you or your child (ren) culture PAs? > > What is your mutation or your childs mutation? > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Wyatt has had PA's probably since he was about 3 years old but we didn't actually know till he was 4 years old. (I am almost 100% his doctors in California missed it) Wyatt has Delta F508 and Steve and I have never actually been tested. Christy > can you guys tell me your own experience > > At what age did you or your child (ren) culture PAs? > > What is your mutation or your childs mutation? > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Wyatt has had PA's probably since he was about 3 years old but we didn't actually know till he was 4 years old. (I am almost 100% his doctors in California missed it) Wyatt has Delta F508 and Steve and I have never actually been tested. Christy > can you guys tell me your own experience > > At what age did you or your child (ren) culture PAs? > > What is your mutation or your childs mutation? > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 , JC is 2.5 and has never cultured PA. He has cultured Staph arreus a couple of times but it has never caused a problem. Last few throat cultures have grown only " normal flora " . He has R1162X and 2789+5G>A. He appears to have a " mild " disease, as he is pancreatic sufficient and so far has had no lung involvement. One of his mutations is supposed to be associated with pacreatic sufficiency but I don't remember which one. Angie PAs/mutations > can you guys tell me your own experience > > At what age did you or your child (ren) culture PAs? > > What is your mutation or your childs mutation? > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 , JC is 2.5 and has never cultured PA. He has cultured Staph arreus a couple of times but it has never caused a problem. Last few throat cultures have grown only " normal flora " . He has R1162X and 2789+5G>A. He appears to have a " mild " disease, as he is pancreatic sufficient and so far has had no lung involvement. One of his mutations is supposed to be associated with pacreatic sufficiency but I don't remember which one. Angie PAs/mutations > can you guys tell me your own experience > > At what age did you or your child (ren) culture PAs? > > What is your mutation or your childs mutation? > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
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