Hi - Just curious what everyone else's experiences have been. We get Jason's CF care at DuPont Hospital in DE. He was recently admitted to CHOP (Children's hospital in Philadelphia) for an elbow fracture. It was during his 28 day on cycle of TOBI. Well he couldn't have it while admitted because they do not allow nebulized antibiotics of any kind due to the possibility of it traveling through the air an causing others to become resistant. The pulmonary fellow on duty seemed to not agree but obviously had to stick to the rules. I was really surprised. I was also surprise that we were in a private room with a sign posted outside for "precautions" indicating gown and gloves before entering. I was amazed that no one except the nursing student and resp. therapist followed such. Now down in day surgery they were tripping over themselves to adhere to precautions - either Jason with a mask or them with a mask as they ushered him to a private holding area within minutes of our arrival. It was a very eye opening experience.
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No TOBI allowed in Children's Hospital?
- Thread starter JoAnn
- Start date
At Children's in Boston, they just recently instituted a new policy regarding nebbed antibiotics. When my kids have treatments, either I have to leave the room or crank up an air purifier they bring in.
I never thought about it much at home. We have two kids doing nebs at the same time. Often we are all in the same room watching tv.
jane
I never thought about it much at home. We have two kids doing nebs at the same time. Often we are all in the same room watching tv.
jane
thelizardqueen
New member
You would think, just like second hand smoke, that it would take years and years to build up an immunity to the TOBI. I mean 2nd hand smoke does cause cancer, but that's after years and years of expossure. TOBI is nothing at all like smoke, so I wouldn't even see the harm in it. Its a strange policy I think.
Haileysmommy
New member
I personally think that is a bit ridiculous. I inhale a ton of TOBI while I do Haileys treatment. She can't do it by herself so someone has to.
I believe that it's not so much that they are worried about the side effects of TOBI on others inhaling it as they are worried about the bugs that live in the hospital becoming resistent to TOBI. That's all we need - for more bacteria that "live" in hospitals to become more resistent to more things. Then we could worry about our loved ones picking up a pseudomonas in the hospital that was already resistent to TOBI.
New England Sinai in Stoughton only let folks use TOBI in one negative pressure room that is ventilated to the outside way down in the basement. That's been true for the past 7 years.
New England Sinai in Stoughton only let folks use TOBI in one negative pressure room that is ventilated to the outside way down in the basement. That's been true for the past 7 years.
L
luke
Guest
Joanne,
I wonder why they just can't put these pt's in an Isolation Room that has reverse airflows that dump the air outside. Almost all hospitals have these of some sort. Not to mention I am not sure how long it takes the droplets to dry(minutes I am sure) but using that logic they might as well quit giving all P.O. antibiotics that may at some time hit the counter. I wonder how much giving a drug that is so expensive has to do with it?
I wonder why they just can't put these pt's in an Isolation Room that has reverse airflows that dump the air outside. Almost all hospitals have these of some sort. Not to mention I am not sure how long it takes the droplets to dry(minutes I am sure) but using that logic they might as well quit giving all P.O. antibiotics that may at some time hit the counter. I wonder how much giving a drug that is so expensive has to do with it?
I think that is really ridiculous. It doesn't suprise me though, CHOP has a lot of ridiculous policies. As you learned, they make all their CF patients wear masks. I went there and deeply resented this. I did my research, and there is no cooroborating literature sayind that people with CF should wear masks as a precaution. CHOP just does not want to get sued over someone's child getting cepacia. Alright I will step off my soapbox now. I hope Jason's facture is healing well!
serendipity730
New member
That was me, above.
The problem with the nebulized antibiotics is that because they are airborne they get into the hospital's ventilation system and then are sent all over the hospital.
I really think we need to let the Infectious Disease Specialists at the hospitals do their jobs about this. They actually take samples around the hospital to find out what's where (bacteria, airborne antibiotics, etc) and how it is getting there. They aren't making up these policies out of thin air. It is their job to make sure that patients (including our loved ones) and staff are not exposed to anything that might make them sick.
I am greatful that they care and try so hard.
-lisaV
I really think we need to let the Infectious Disease Specialists at the hospitals do their jobs about this. They actually take samples around the hospital to find out what's where (bacteria, airborne antibiotics, etc) and how it is getting there. They aren't making up these policies out of thin air. It is their job to make sure that patients (including our loved ones) and staff are not exposed to anything that might make them sick.
I am greatful that they care and try so hard.
-lisaV
I agree, why don't they just put these patients in an isolation room which has the reverse/negative airflow back pressure and has 2 doors, allowing NO air to escape the room and being ventalated through it's own system.
Seems that preventing a child from doing his Rx'd prescriptions for CF, vice worrying about a lawsuit from a someone who has built a resistance to tobi-is MUCH more cause for a lawsuit. And by the way, I have NEVER heard of someone who has a resistance to TOBI-yet. Anyone else heard of anything different? I'd be curious to know!!!
Hope Jason's arm is better. BTW, I've heard a lot of negative things about CHOP. Is there another option for you?????
Seems that preventing a child from doing his Rx'd prescriptions for CF, vice worrying about a lawsuit from a someone who has built a resistance to tobi-is MUCH more cause for a lawsuit. And by the way, I have NEVER heard of someone who has a resistance to TOBI-yet. Anyone else heard of anything different? I'd be curious to know!!!
Hope Jason's arm is better. BTW, I've heard a lot of negative things about CHOP. Is there another option for you?????
I think alot of people who have been on tobi a while have pseudo which is resistent. I have been on Tobra/Tobi for over 10 years and culture Pseudo which is resistent to it. I have also been told by a few RT's that if say someone without cf has a minor sinus infection and inhales a bit of second hand tobi, it is not enough to kill the bacteria in their infection, but is enough for the bacteria to build up resistence to it. How fast this happens I don't know.
thelizardqueen
New member
Interesting. I've been on Tobra for 11 years now, and have not built up a resistance to it yet - and this is inhaling first hand, not second hand.
Again. they are focused mainly on making sure that the pseudomonas and other bacteria that live in the HOSPITAL NOT the pseudomonas that lives in other patients doesn't come in contact with the TOBI. If everyone who needed tobi used it in such a way that it goes into the ventilation system, the bacteria that live in the hospital would be exposed to TOBI over and over again and would eventually only those bacteria that was resistent to the TOBI would survive. At that point, the hospital itself would be harboring TOBI-resistent bacteria - and anyone wuith a depresed immune system (not just CFers) coming into the hospital for anything would be at risk of acuiring a TOBI-resistent bacterial infection.
Think about it.
Letting hospital-based bugs become resistent to an antibiotic is exactly how MRSA came to be.
They are doing their best to make sure that there aren't hospital-based strains of pseudomonas that are resistent to TOBI. We want to help them with that, right?
LisaV
Think about it.
Letting hospital-based bugs become resistent to an antibiotic is exactly how MRSA came to be.
They are doing their best to make sure that there aren't hospital-based strains of pseudomonas that are resistent to TOBI. We want to help them with that, right?
LisaV
about microbiol resistence, see ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.shea-online.org/assets/files/position_papers/AntimicroResist97.PDF">http://www.shea-online.org/ass.../AntimicroResist97.PDF</a> ) .
Note:
"Areas in the hospital that have the highest rate of antimicrobial resistance are the areas that have the highest usage of anitimicrobials."
-lisav
Note:
"Areas in the hospital that have the highest rate of antimicrobial resistance are the areas that have the highest usage of anitimicrobials."
-lisav
Hi All - thank you so much for all of your experiences. It is more info in which to make educated decisions in the future. As far as having other options in regards to CHOP, we love DuPont for his CF care. We have an independent contract with our health ins. and my husband's employer that allows Jason to go there for any CF related care, including hospitalizations for CF. Because this hospitalization was for his elbow fracture, we had to go to an in network facility for it to be covered. Our in-network choices of pediatric ortho's was a bit limited. CHOP was our best choice considering our options. I think in a way it was a blessing to see how things are handled at CHOP for choices in the future. They would absolutely not be our choice for the CF clinic for many reasons.
I also wanted to thank everyone on this site - I was having a really emotional weekend; just feeling very overwhelmed and angry as a result. I kept turning to the board to just read all of the different posts, watch the great video feeds that people have been making and catch up on how everyone else is. It is so wonderful to have a place to go where you feel like you are def. not alone.
I am def. going to ask our cf clinic about their thoughts.
Again thank you so very much for ALL of your thoughts and opinions!!!
I also wanted to thank everyone on this site - I was having a really emotional weekend; just feeling very overwhelmed and angry as a result. I kept turning to the board to just read all of the different posts, watch the great video feeds that people have been making and catch up on how everyone else is. It is so wonderful to have a place to go where you feel like you are def. not alone.
I am def. going to ask our cf clinic about their thoughts.
Again thank you so very much for ALL of your thoughts and opinions!!!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JoAnn</b></i>
Hi All - thank you so much for all of your experiences. It is more info in which to make educated decisions in the future. As far as having other options in regards to CHOP, we love DuPont for his CF care. We have an independent contract with our health ins. and my husband's employer that allows Jason to go there for any CF related care, including hospitalizations for CF. Because this hospitalization was for his elbow fracture, we had to go to an in network facility for it to be covered. Our in-network choices of pediatric ortho's was a bit limited. CHOP was our best choice considering our options. I think in a way it was a blessing to see how things are handled at CHOP for choices in the future. They would absolutely not be our choice for the CF clinic for many reasons.
I also wanted to thank everyone on this site - I was having a really emotional weekend; just feeling very overwhelmed and angry as a result. I kept turning to the board to just read all of the different posts, watch the great video feeds that people have been making and catch up on how everyone else is. It is so wonderful to have a place to go where you feel like you are def. not alone.
I am def. going to ask our cf clinic about their thoughts.
Again thank you so very much for ALL of your thoughts and opinions!!!</end quote></div>
Hi All - thank you so much for all of your experiences. It is more info in which to make educated decisions in the future. As far as having other options in regards to CHOP, we love DuPont for his CF care. We have an independent contract with our health ins. and my husband's employer that allows Jason to go there for any CF related care, including hospitalizations for CF. Because this hospitalization was for his elbow fracture, we had to go to an in network facility for it to be covered. Our in-network choices of pediatric ortho's was a bit limited. CHOP was our best choice considering our options. I think in a way it was a blessing to see how things are handled at CHOP for choices in the future. They would absolutely not be our choice for the CF clinic for many reasons.
I also wanted to thank everyone on this site - I was having a really emotional weekend; just feeling very overwhelmed and angry as a result. I kept turning to the board to just read all of the different posts, watch the great video feeds that people have been making and catch up on how everyone else is. It is so wonderful to have a place to go where you feel like you are def. not alone.
I am def. going to ask our cf clinic about their thoughts.
Again thank you so very much for ALL of your thoughts and opinions!!!</end quote></div>
thefrogprincess
New member
I've actually heard this from my doctors at Seattle Children's Hospital before I started going to the adult clinic at the University of Washington. TOBI is such a strong antibiotic that they don't want it getting into the general population. When I went on it for the first time my mother was asked if we had an air purifyer in the house. We did so they didn't worry about it. Think about it though, how often is penecillin perscribed anymore? Not much, I've never been on it for anything. And in the grand scheme of things penecilin hasn't been around that long. But there are a lot of bugs that are resistnat to it. Many hospitals have policies regarding antibiotics. Lots of doctors perscribe them to people who just have a cold virus or the flu because the patient thinks it helps them, but it really doesn't. REsistance is getting out of control and drug makers can't keep up. Not that I agree with stopping a course in the middle. The hospital could have brought in an air purifier or put him in isolation so he could still get his meds but not expose others.