Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 WOuld someone please be able to explain to me what Pseudomonas is. I have heard little about it, and would like to know more. Do all CF'ers get Pseudomonas? Is there any way to prevent this?- Is their any way to tell if someone has Pseudomonas? Is Pseudomonas " the worst " a CFer can get? Sorry for all the questions! Kind Thanks, Kirsty & 4months wcf -- In cfparents@y..., Mcesana@a... wrote: > Pseudomonas Auroginosa smels prety bad. n Rojas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Dear Kirsty, Pseudomonas is a bacteria that thrives in damp places - ie. showers, pools, drains, in soils etc. Clinic advise it is everywhere and you cannot avoid it. Whilst it is not a good bug to get in the sense that long term it cannot be totally eradicated I believe they have quite a few antibiotics to target it and are developing more all the time. At present there is no innoculations against it. I'm more scared/petrified of cepacia. They diagnose it by culturing it off cough swabs. My son (8 yrs old) first had it when he was four. They treated it with Gentamycin and it went till this year. It didn't get eradicated by Gent this time - it took Colistin nebulised for 3 mths plus they put him on cipro. Most people with CF culture postive to pseudomonas at some time. The longer it takes to get it the better. Pseudomonas thrives in the warm moist atmosphere of the thick sticky mucus in CF lungs but also loves to grow in open wounds (it loves surgical wards and is nearly in all intensive care units). Hope this helps. Regards, Margaret Todd Pseudomonas > WOuld someone please be able to explain to me what Pseudomonas is. I > have heard little about it, and would like to know more. > > Do all CF'ers get Pseudomonas? Is there any way to prevent this?- Is > their any way to tell if someone has Pseudomonas? Is Pseudomonas " the > worst " a CFer can get? > > Sorry for all the questions! > > Kind Thanks, > Kirsty & 4months wcf > > > -- In cfparents@y..., Mcesana@a... wrote: > > Pseudomonas Auroginosa smels prety bad. n Rojas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Psuedomonas is a very common bacteria you find it in ear infections a pimple is psueodomonas. They say that psuedomonas is on people skin all of the time that is why good hand washing is very important. Kids that have CF can get it in there lungs and it can do damage to there lungs if not treated. It can enter though the nose or mouth. It is not the worst bacteria there is Burkholderia Cepacia that is hard to treat because it doesn't always respond to antibiotic. But our doctor tells us that kids that are really sick are more at risk to get this bacteria. The say it lives in things like raw onions or dead tree bark. The best think to do to keep your kid healthy is wash you hands and clean you sheets on you bed every day because if they have psuedomonas and there spit gets on there sheets they can reinfect themselves and never get rid of it. I hope this helps Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 In a message dated 10/23/2001 2:02:28 AM Eastern Daylight Time, kirstylee@... writes: << Do all CF'ers get Pseudomonas? Eventually I belive all do. Is there any way to prevent this?- Keeping clean. Washing hands. Is their any way to tell if someone has Pseudomonas? Some day smell, color of sputum...You can tell by a sputum culture. The later kids get it the better. Tobi, Coly, are inhaled antibodics used to treat it. Cipro usually orally. Once you get it you never eradicate it. My 5 got it at 6 mos. and is doing great. He has been on inhaled antibodics for 5 years continuously. Is Pseudomonas " the worst " a CFer can get? No. B. Ceptacia (spelling is incorrect is the worst)... >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Hi Kirsty, in addition to Margaret's mail I would like to say, that there seems to be a difference between Pseudomonas from the environment and Pseudomonas from other pwcf. Scientific proof is still lacking, but since Dr. Niels Hoiby from Denmark (THE CF guru) has installed a strict segregation between patients with and without pseudomonas, there have hardly been new cases of pseudomonas infection in Denmark. And of course the country itself is as moist as before :-)) It's very difficult to tell, where pwcf have gotten their pseudomonas from, but I am convinced that the bacteria learns to outmaneuver the body defense in the lung and then is far more contagious than the normal pseudomonas in the environment. That's why we are very carefully during our clinic visits and don't allow Fiona to get into contact with other pwcf. For although unknown reasons 80 percent of the pwcf catch the pseudomonas, while the remaining 20 percent aren't affected. Pseudomonas infections are the main reason for the persisitent lung inflammation and the production of large amounts of sputum, what finally leads to lethal lung problems. Some scientists claim, that it is not the bacteria themselves, that causes harm, but that an overreacting immune system is the culprit. Peace Torsten, dad of Fiona 4wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Amy, What med.'s are you using in the nebulizer? We used Collistin when we have psuedomonas but if there isn't any psuedomonas they don't but them on anything. They have never put us on Zithromax for CF before. I know they do but I am wondering why if his throat culture was negative. Dr. Weinberger was the first doctor we say. I didn't think he was a CF doctor thou. I thought he was just pulmonary doctor I thought he mostly saw kid with asthma. He was OK but I thought he was a little strange. We have seen Dr. Ahrens (liked him), Dr. McCray (Didn't like him), and Dr. (loved him). About the sheets I was told that it helps keep psuedomonas away. I usually try to keep the pillow cases changed everyday. Mostly when they have tested positive for psuedomonas. I hope this helps. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Does it really make a difference to wash your sheets every day?! Amy P.S. Deb -- the dr we saw from Ia City was Dr. Weinberger (unsure of spelling) Tristan did have a throat culture about 3 weeks ago right when the cough started and it was negative, but the cough hasn't gotten better, actually worse. He has been on two doses of Zithromax and we go back to our dr next Tuesday. They are waiting to see how he responds to the Zithromax and increased nebulizer treatments I guess. I can't stand the waiting and get more worried by the day! The dr keeps telling us if he is eating, sleeping, and active like normal then not to worry a lot. Easy for him to say! Re: Pseudomonas Psuedomonas is a very common bacteria you find it in ear infections a pimple is psueodomonas. They say that psuedomonas is on people skin all of the time that is why good hand washing is very important. Kids that have CF can get it in there lungs and it can do damage to there lungs if not treated. It can enter though the nose or mouth. It is not the worst bacteria there is Burkholderia Cepacia that is hard to treat because it doesn't always respond to antibiotic. But our doctor tells us that kids that are really sick are more at risk to get this bacteria. The say it lives in things like raw onions or dead tree bark. The best think to do to keep your kid healthy is wash you hands and clean you sheets on you bed every day because if they have psuedomonas and there spit gets on there sheets they can reinfect themselves and never get rid of it. I hope this helps Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 Kirsty, Firstly why does need a bronc.? Is he ill? Eilish has had loads of them and no problems. She's going to clinic Monday and at this rate will get to spend the next 2 weeks there, lucky us! Pseudomonas - A bugger of a bug that we took 9 months of solid treatment to get rid of (or hide) but Im betting she has it back. Eilish never mixes with other Cfers especially older ones so I think hers was from playing in the dirt. They say most Cfers get it as its everywhere. Our clinic and hsp. do not seperate them in clinic and if you fight ( and fight hard) they will in the ward but you need to stay to make sure of that as they wont keep watch for that. Every visit and I fight about it. Then we threaten were taking her home then miracle - she gets a seperate room. Especially when the cfers share the ward with infectious kids who have gastro, croup etc. Dont get me started on that as Ive written to the hsp. and spoke to the infectious disease guy about the stupidity of them sharing a ward with these other kids. Ask the hsp,. for a print out on pseudomonas and they will give them to you. Pseudomonas > WOuld someone please be able to explain to me what Pseudomonas is. I > have heard little about it, and would like to know more. > > Do all CF'ers get Pseudomonas? Is there any way to prevent this?- Is > their any way to tell if someone has Pseudomonas? Is Pseudomonas " the > worst " a CFer can get? > > Sorry for all the questions! > > Kind Thanks, > Kirsty & 4months wcf > > > -- In cfparents@y..., Mcesana@a... wrote: > > Pseudomonas Auroginosa smels prety bad. n Rojas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Hi , On this note...cross infection is a fact. Your hospital needs to get in to the 21st Century! You are right about the pseudo. Shantell has only seen one person in all her 20 years with CF. I don't know when she actually contracted it. Probably in the hospital and probably not from another CF patient. All kinds of people contract pseudo, and even if you spend your whole life trying to protect them from it, chances are they will eventually get it. The majority of CF patients eventually get it. I believe it is when their immune system is down, and chronic use of antibiotics creates the environment. Both of which you cannot overcome in CF. FG, mom of Shantell 19 1/2 years wcf > [Original Message] > > To: cfparents > > Date: 10/24/2001 6:51:08 AM > Subject: Re: Pseudomonas > > Kirsty, > > Firstly why does need a bronc.? Is he ill? Eilish has had loads of > them and no problems. She's going to clinic Monday and at this rate will > get to spend the next 2 weeks there, lucky us! > > Pseudomonas - A bugger of a bug that we took 9 months of solid treatment to > get rid of (or hide) but Im betting she has it back. Eilish never mixes > with other Cfers especially older ones so I think hers was from playing in > the dirt. They say most Cfers get it as its everywhere. Our clinic and > hsp. do not seperate them in clinic and if you fight ( and fight hard) they > will in the ward but you need to stay to make sure of that as they wont keep > watch for that. Every visit and I fight about it. Then we threaten > were taking her home then miracle - she gets a seperate room. Especially > when the cfers share the ward with infectious kids who have gastro, croup > etc. Dont get me started on that as Ive written to the hsp. and spoke to > the infectious disease guy about the stupidity of them sharing a ward with > these other kids. > > Ask the hsp,. for a print out on pseudomonas and they will give them to you. > > > Pseudomonas > > > > WOuld someone please be able to explain to me what Pseudomonas is. I > > have heard little about it, and would like to know more. > > > > Do all CF'ers get Pseudomonas? Is there any way to prevent this?- Is > > their any way to tell if someone has Pseudomonas? Is Pseudomonas " the > > worst " a CFer can get? > > > > Sorry for all the questions! > > > > Kind Thanks, > > Kirsty & 4months wcf > > > > > > -- In cfparents@y..., Mcesana@a... wrote: > > > Pseudomonas Auroginosa smels prety bad. n Rojas > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 > > Many kinds of fluids can harbour Pseudomonas after a while and we are > cautious with the use of sprays. > > Peace > Torsten, dad of Fiona 4wcf > e-mail: torstenkrafft@... Torsten, I've been wondering and trying to find the answer to this question. How does the Pseudomonas get into the sprays? In other words, is it due to factory conditions or just lack of sterile conditions? When you say " after a while, " is the time from when it was manufactured the main issue? Do you have any links on this? I asked our clinic and they said, " bacteria is everywhere, " which didn't satisfy my curiosity. :-) I make my own salves and oils and sometimes sprays and I want to know if I could possibly accidentally contaminate them with Pseudo. For example, my friend made a chest rub with olive oil as a base, then some essential oils and herbs, for . Usually there are antibacterial essential oils in there...but I'm wondering if Pseudo could be hanging out in there anyway. *&~*&~*&~*&~*&~*&~*&~*&~*&~*&~&*~*&~*&~&*~*&~*&~&* mama to , 16 months old w CF and 3 years wo CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Hi Lynette, welcome to the list! It's hard to get rid of Pseudomonas and unknown, why it is possible in some cases and impossible in others. As a rule of thumb, the earlier you detect the P.a. the higher is the chance to eradicate it. That's why it is recommended to have a throat swab or sputum culture done every three months. Many kinds of fluids can harbour Pseudomonas after a while and we are cautious with the use of sprays. Peace Torsten, dad of Fiona 4wcf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 What fluids can harbour Pseudomonas? W. mom to Adam and Alec twins wcf Torsten Krafft wrote: > Hi Lynette, > > welcome to the list! It's hard to get rid of Pseudomonas and unknown, why it > is possible in some cases and impossible in others. As a rule of thumb, the > earlier you detect the P.a. the higher is the chance to eradicate it. That's > why it is recommended to have a throat swab or sputum culture done every > three months. > > Many kinds of fluids can harbour Pseudomonas after a while and we are > cautious with the use of sprays. > > Peace > Torsten, dad of Fiona 4wcf > e-mail: torstenkrafft@... > > > PLEASE do not post religious emails to the list. > > ------------------------------------------- > > 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 January 30, 2002 Report Share Posted January 30, 2002 ; When there are recalls on products due to bacterial contamination with p.a. or others, it is often because testing on the product revealed the bacteria and so, yes, it probably got contaminated at the company level. Many of our household products can easily become contaminated once they have been opened because p.a. and other bacteria easily travel on moisture in the air. That is why even bottles of ventolin kept in the fridge can grow p.a. (our clinic once said it can grow in ventolin bottles in about 5 days so not to keep them beyond that after opening them -- we switched to using only premeasured nebules of ventolin). Torsten suggested avoiding sprays as much as possible and that is the thinking in our family too. At least, then, we are not aerosolizing the bacteria to make it easier to breathe in. Re: Pseudomonas > > > > > Many kinds of fluids can harbour Pseudomonas after a while and we are > > cautious with the use of sprays. > > > > Peace > > Torsten, dad of Fiona 4wcf > > e-mail: torstenkrafft@... > > Torsten, > > I've been wondering and trying to find the answer to this question. How does > the Pseudomonas get into the sprays? In other words, is it due to factory > conditions or just lack of sterile conditions? When you say " after a while, " > is the time from when it was manufactured the main issue? Do you have any > links on this? I asked our clinic and they said, " bacteria is everywhere, " > which didn't satisfy my curiosity. :-) > > I make my own salves and oils and sometimes sprays and I want to know if I > could possibly accidentally contaminate them with Pseudo. For example, my > friend made a chest rub with olive oil as a base, then some essential oils > and herbs, for . Usually there are antibacterial essential oils in > there...but I'm wondering if Pseudo could be hanging out in there anyway. > > *&~*&~*&~*&~*&~*&~*&~*&~*&~*&~&*~*&~*&~&*~*&~*&~&* > > > mama to , 16 months old w CF and 3 years wo CF > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > 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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