Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Thanks Tammy! Ya we have one more week for my oldest to be done with medication and now my youngest will be on it. It never ends. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Thanks Tammy! Ya we have one more week for my oldest to be done with medication and now my youngest will be on it. It never ends. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Thanks Tammy! Ya we have one more week for my oldest to be done with medication and now my youngest will be on it. It never ends. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Yes, Tammy I have a 10 year old and a 5 year old and I also have a 8 year old that does not have CF THANK GOD! She is my big helper. There are days that I just want to SCREAMMMMM but it really doesn't do any good because know one understand like this group understand. I am so glad I have you are all here!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Yes, Tammy I have a 10 year old and a 5 year old and I also have a 8 year old that does not have CF THANK GOD! She is my big helper. There are days that I just want to SCREAMMMMM but it really doesn't do any good because know one understand like this group understand. I am so glad I have you are all here!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 In a message dated 10/25/2002 7:54:01 PM Central Daylight Time, mks65roses@... writes: > My son, Ben cultured this bacteria four years ago. He cultured it, > had no symptoms, and our clinic was not concerned about it. He got > rid of it, then cultured it again six months later. He got rid of it > again and has not cultured it again since. . .four years without > culturing it. He did not get sick or have any symptoms from this > bacteria. Hopefully your child will not have any difficulty and will > get rid of it. I hope so too. She doesn't have any symptoms either other then I have been noticing she has wanted to lay down and take a nap more which she hasn't asked to do in a long time. She is 5 and when she first started school she would come home and want to take a nap but that was only for the first week. So I was kind of suspicious that something was going on. Also she has been a REAL CRAB!!!! Which I think is another sign. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 In a message dated 10/25/2002 7:54:01 PM Central Daylight Time, mks65roses@... writes: > My son, Ben cultured this bacteria four years ago. He cultured it, > had no symptoms, and our clinic was not concerned about it. He got > rid of it, then cultured it again six months later. He got rid of it > again and has not cultured it again since. . .four years without > culturing it. He did not get sick or have any symptoms from this > bacteria. Hopefully your child will not have any difficulty and will > get rid of it. I hope so too. She doesn't have any symptoms either other then I have been noticing she has wanted to lay down and take a nap more which she hasn't asked to do in a long time. She is 5 and when she first started school she would come home and want to take a nap but that was only for the first week. So I was kind of suspicious that something was going on. Also she has been a REAL CRAB!!!! Which I think is another sign. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 In a message dated 10/25/2002 7:54:01 PM Central Daylight Time, mks65roses@... writes: > My son, Ben cultured this bacteria four years ago. He cultured it, > had no symptoms, and our clinic was not concerned about it. He got > rid of it, then cultured it again six months later. He got rid of it > again and has not cultured it again since. . .four years without > culturing it. He did not get sick or have any symptoms from this > bacteria. Hopefully your child will not have any difficulty and will > get rid of it. I hope so too. She doesn't have any symptoms either other then I have been noticing she has wanted to lay down and take a nap more which she hasn't asked to do in a long time. She is 5 and when she first started school she would come home and want to take a nap but that was only for the first week. So I was kind of suspicious that something was going on. Also she has been a REAL CRAB!!!! Which I think is another sign. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Feel free to scream. We all are. My biggest phobia is the Dentist. My crown just fell out. Now, I have to go to the Dentist. DAMN.....figures........can things get worse......? 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 25, 2002 Report Share Posted October 25, 2002 Feel free to scream. We all are. My biggest phobia is the Dentist. My crown just fell out. Now, I have to go to the Dentist. DAMN.....figures........can things get worse......? 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 25, 2002 Report Share Posted October 25, 2002 Feel free to scream. We all are. My biggest phobia is the Dentist. My crown just fell out. Now, I have to go to the Dentist. DAMN.....figures........can things get worse......? 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 25, 2002 Report Share Posted October 25, 2002 AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!! ! Was that loud enough! I hope I didn't wake the neighbors LOL!! Sorry to hear about your tooth. I hate dentists too and the expense of getting them fix. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 In a message dated 10/25/2002 11:39:24 PM Central Daylight Time, tammyfischer2001@... writes: > was that you Deb? I can here you here in Indiana! > Shhhhhhh this is the only peace and quiet I get all > day, when the kids are in bed!! Ya I know what you mean I love my nights on the computer but my hubby hates it. But I need it to keep me sane. I'll be a little quieter so people can sleep. LOL Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 In a message dated 10/25/2002 11:39:24 PM Central Daylight Time, tammyfischer2001@... writes: > was that you Deb? I can here you here in Indiana! > Shhhhhhh this is the only peace and quiet I get all > day, when the kids are in bed!! Ya I know what you mean I love my nights on the computer but my hubby hates it. But I need it to keep me sane. I'll be a little quieter so people can sleep. LOL Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 My son, Ben cultured this bacteria four years ago. He cultured it, had no symptoms, and our clinic was not concerned about it. He got rid of it, then cultured it again six months later. He got rid of it again and has not cultured it again since. . .four years without culturing it. He did not get sick or have any symptoms from this bacteria. Hopefully your child will not have any difficulty and will get rid of it. Different bacteria Hey everybody! I just found out this week that my youngest is positive again but she also has a different bacteria called Stenotrophomonas maltophilia, also known as Xanthomonas. Has anyone every heard of this strain of bacteria? This is the first time I have heard of it. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 My son, Ben cultured this bacteria four years ago. He cultured it, had no symptoms, and our clinic was not concerned about it. He got rid of it, then cultured it again six months later. He got rid of it again and has not cultured it again since. . .four years without culturing it. He did not get sick or have any symptoms from this bacteria. Hopefully your child will not have any difficulty and will get rid of it. Different bacteria Hey everybody! I just found out this week that my youngest is positive again but she also has a different bacteria called Stenotrophomonas maltophilia, also known as Xanthomonas. Has anyone every heard of this strain of bacteria? This is the first time I have heard of it. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 My son, Ben cultured this bacteria four years ago. He cultured it, had no symptoms, and our clinic was not concerned about it. He got rid of it, then cultured it again six months later. He got rid of it again and has not cultured it again since. . .four years without culturing it. He did not get sick or have any symptoms from this bacteria. Hopefully your child will not have any difficulty and will get rid of it. Different bacteria Hey everybody! I just found out this week that my youngest is positive again but she also has a different bacteria called Stenotrophomonas maltophilia, also known as Xanthomonas. Has anyone every heard of this strain of bacteria? This is the first time I have heard of it. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Tammy, We get tested for psuedomonas every month with a throat culture. When they are positive the only way I know how to get rid of it is with nebulizer treatments and cipro orally. Are you sure she has had psuedomonas? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Tammy, We get tested for psuedomonas every month with a throat culture. When they are positive the only way I know how to get rid of it is with nebulizer treatments and cipro orally. Are you sure she has had psuedomonas? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 In a message dated 10/26/2002 12:02:06 AM Central Daylight Time, tammyfischer2001@... writes: > Tammy > Is this a CF clinic you go to? Because that is the best place to go. Where is the closes University to you? We go to the University of Iowa. I talk to a lady in Indiana she has two daughters with CF like me. I will have to ask her what hospital she goes to. I can let you know where it is. It sounds very strange to me that they don't test you at least once a month with a throat culture. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 In a message dated 10/26/2002 12:02:06 AM Central Daylight Time, tammyfischer2001@... writes: > Tammy > Is this a CF clinic you go to? Because that is the best place to go. Where is the closes University to you? We go to the University of Iowa. I talk to a lady in Indiana she has two daughters with CF like me. I will have to ask her what hospital she goes to. I can let you know where it is. It sounds very strange to me that they don't test you at least once a month with a throat culture. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 In a message dated 10/26/2002 12:02:06 AM Central Daylight Time, tammyfischer2001@... writes: > Tammy > Is this a CF clinic you go to? Because that is the best place to go. Where is the closes University to you? We go to the University of Iowa. I talk to a lady in Indiana she has two daughters with CF like me. I will have to ask her what hospital she goes to. I can let you know where it is. It sounds very strange to me that they don't test you at least once a month with a throat culture. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Hi Deb. and Mallory both cultured maltophilia before they had pseudomonas, I think for about a year they cultured it. Once, it was misidentified by the local lab as B. Cepacia, because it grew on the cepacia culture (we had it sent to LiPuma and found out it wasn't cepacia...but that was the second time, so we suspected it wasn't cepacia, the first time it was something else they misidentified as cepacia) anyway, back then the jury wasn't totally in and no one knew whether to treat for sure. They did treat them with Bactrim prophylactically, then Mallory was resistent to that. they also got Tobi. Ironically, eventually the pseudo took over and we haven't seen maltophilia since pseudo showed up continuously in their sputum. Take care Jen > Hey everybody! I just found out this week that my youngest is positive again > but she also has a different bacteria called Stenotrophomonas maltophilia, > also known as Xanthomonas. Has anyone every heard of this strain of bacteria? > This is the first time I have heard of i Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Excerpt from Stenotrophomonas Maltophilia Synonyms, Key Words, and Related Terms: Pseudomonas maltophilia infection, P maltophilia Please click here to view the full topic text: Stenotrophomonas Maltophilia Background: Stenotrophomonas (Pseudomonas) maltophilia is an aerobic gram-negative bacillus that is an infrequent pathogen in humans and is found in a variety of aquatic environments. S maltophilia is an organism of low virulence and is a frequent colonizer of fluids used in the hospital setting, ie, irrigation solutions and intravenous (IV) fluids, and of patient secretions, ie, respiratory secretions, urine, or wound exudates. S maltophilia usually must bypass normal host defenses to cause human infection. For example, if fluid in an irrigation solution becomes colonized with this organism, irrigating an open wound can cause colonization or infection of the wound. S maltophilia usually is not capable of causing disease in healthy hosts without the assistance of invasive medical devices that bypass normal host defenses. Pathophysiology: S maltophilia has few pathogenic mechanisms and, for this reason, predominantly results in colonization rather than infection. If infection does occur, invasive medical devices usually are the vehicles by which the organism bypasses normal host defenses. Otherwise, the pathophysiology of this nonfermentative aerobic gram-negative bacillus is not different from other nonfermentative aerobic organisms. Frequency: a.. Internationally: In the ambulatory setting, S maltophilia is a frequent colonizer in the respiratory tract in patients with cystic fibrosis. Different bacteria Hey everybody! I just found out this week that my youngest is positive again but she also has a different bacteria called Stenotrophomonas maltophilia, also known as Xanthomonas. Has anyone every heard of this strain of bacteria? This is the first time I have heard of it. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Excerpt from Stenotrophomonas Maltophilia Synonyms, Key Words, and Related Terms: Pseudomonas maltophilia infection, P maltophilia Please click here to view the full topic text: Stenotrophomonas Maltophilia Background: Stenotrophomonas (Pseudomonas) maltophilia is an aerobic gram-negative bacillus that is an infrequent pathogen in humans and is found in a variety of aquatic environments. S maltophilia is an organism of low virulence and is a frequent colonizer of fluids used in the hospital setting, ie, irrigation solutions and intravenous (IV) fluids, and of patient secretions, ie, respiratory secretions, urine, or wound exudates. S maltophilia usually must bypass normal host defenses to cause human infection. For example, if fluid in an irrigation solution becomes colonized with this organism, irrigating an open wound can cause colonization or infection of the wound. S maltophilia usually is not capable of causing disease in healthy hosts without the assistance of invasive medical devices that bypass normal host defenses. Pathophysiology: S maltophilia has few pathogenic mechanisms and, for this reason, predominantly results in colonization rather than infection. If infection does occur, invasive medical devices usually are the vehicles by which the organism bypasses normal host defenses. Otherwise, the pathophysiology of this nonfermentative aerobic gram-negative bacillus is not different from other nonfermentative aerobic organisms. Frequency: a.. Internationally: In the ambulatory setting, S maltophilia is a frequent colonizer in the respiratory tract in patients with cystic fibrosis. Different bacteria Hey everybody! I just found out this week that my youngest is positive again but she also has a different bacteria called Stenotrophomonas maltophilia, also known as Xanthomonas. Has anyone every heard of this strain of bacteria? This is the first time I have heard of it. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
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