Tune ups

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anonymous

New member
Question about tune-ups. Has anyone been scheduled for quartly tune-ups even though you really aren't having any flair-ups? My daughter, 2 1/2, has CF and we (the doctor and parents) are thinking about inserting a port line and doing tune-ups 2-4 times a year. Idea is not to wait until there is a problem, but to try to prevent problems. Sounds like a great approach, however, there is something about putting in a port line and doing IV antibotics on a quartly bases to a relatively healthy little girl (relative being the key word there). She had a tune-up in November which cleared up a persisent cough, gave her more energy, and since she has really put on weight. Our doctor has also said several time that Europeans CF patients are living longer and are doing the quartly tune-ups. Just wanted to hear someone else who is having it done.

thanks
 
A

anonymous

New member
Question about tune-ups. Has anyone been scheduled for quartly tune-ups even though you really aren't having any flair-ups? My daughter, 2 1/2, has CF and we (the doctor and parents) are thinking about inserting a port line and doing tune-ups 2-4 times a year. Idea is not to wait until there is a problem, but to try to prevent problems. Sounds like a great approach, however, there is something about putting in a port line and doing IV antibotics on a quartly bases to a relatively healthy little girl (relative being the key word there). She had a tune-up in November which cleared up a persisent cough, gave her more energy, and since she has really put on weight. Our doctor has also said several time that Europeans CF patients are living longer and are doing the quartly tune-ups. Just wanted to hear someone else who is having it done.

thanks
 
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miesl

New member
Personally, I would be concerned about her bacteria developing resistances to antibiotics. Have you discussed this with your doctors?
 
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miesl

New member
Personally, I would be concerned about her bacteria developing resistances to antibiotics. Have you discussed this with your doctors?
 
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anonymous

New member
When DS was first diagnosed, his doctor mentioned "tune ups" in the context of "they used to have patients come in once or twice a year for cleanouts/tune ups", but it didn't sound like they did that anymore. Now it's based on symptoms. Did the person develop a cold, which turned into something worse -- staph infection.... Then they'd order iv antibiotics based on an infection, not because it's summer and time for all the cfers who are on break from school to go in and get cleaned out. Liza
 
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anonymous

New member
When DS was first diagnosed, his doctor mentioned "tune ups" in the context of "they used to have patients come in once or twice a year for cleanouts/tune ups", but it didn't sound like they did that anymore. Now it's based on symptoms. Did the person develop a cold, which turned into something worse -- staph infection.... Then they'd order iv antibiotics based on an infection, not because it's summer and time for all the cfers who are on break from school to go in and get cleaned out. Liza
 
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anonymous

New member
I was concerned about resistance. One thing I found interesting was that psuedomos starts to become resistance to TOBI within 28 days of treatment (or maybe 6 months). I want to find some info about this, but if you wait for symptoms, then you degradation of lung function. I don't know, need to find some more information.
 
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anonymous

New member
I was concerned about resistance. One thing I found interesting was that psuedomos starts to become resistance to TOBI within 28 days of treatment (or maybe 6 months). I want to find some info about this, but if you wait for symptoms, then you degradation of lung function. I don't know, need to find some more information.
 
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thelizardqueen

New member
I'm completly against tuneups. What is the point of going into hospital and taking IV drugs, when you're not sick and don't need them? I don't see them as preventatives either, as what happens when you build up a resistance to all of these IV drugs? What will you use later on in life when you really need them? I say tuneups or IVs are only good, if oral or inhaled antibiotics are not working for you anymore. I've had one course of IVS in my whole life and that was 10 years ago. When I get sick, oral and inhaled antibiotics do the trick for me. I've been on TOBI on and off for over 10 years now, and I haven't built up a resistance to it at all.

I don't like the idea that docs push drugs or IV treatments before considering other options.
 
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thelizardqueen

New member
I'm completly against tuneups. What is the point of going into hospital and taking IV drugs, when you're not sick and don't need them? I don't see them as preventatives either, as what happens when you build up a resistance to all of these IV drugs? What will you use later on in life when you really need them? I say tuneups or IVs are only good, if oral or inhaled antibiotics are not working for you anymore. I've had one course of IVS in my whole life and that was 10 years ago. When I get sick, oral and inhaled antibiotics do the trick for me. I've been on TOBI on and off for over 10 years now, and I haven't built up a resistance to it at all.

I don't like the idea that docs push drugs or IV treatments before considering other options.
 
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littledebbie

New member
I am so against this I don't know where to start. I just sort of addressed this in the adults folder too. I don't know when they developed this "how to treat CF" play book they seem to use, but it worries me that they are using our best weapons for no apparent reason. And what good is quartelry going to do? I think a lot of people on here could say they've gone a year or two without needing a hospitialization and then turned around and had a year where they were in three times. There is no ryhmye or reason, no strict plan for how this disease progresses. And why do Dr.'s get so blase about the fact this person is more than their disease. Why put this foreign object into a childs body to put them in the hospital 4 times a year at 2-3 weeks at a time, when they feel Fine!!! Arg!!!!!!! Quality of life people, let's keep our eye on the ball...quality of life. Hospitals are for when you are sick, really sick. It's called a tune-up. You wouldn't take your car in for a total engine rebuild when all it needs is an oil change. Oil change is maintanance....chest pt, inhalations, high cal diet, Dr.'d visits. Tune ups are iv's, heavy hitting antibiodicts, you're taking stuff apart to put it back together. And there's a mental toll to all those tune up, and you can ctach a lot of stuff in hospitals, and they will get resistant to these drugs that they will NEED one day.

Okay, so I guess I made my view clear...he he he, sorry over enthusiastic about this probably. So you know where I'm coming from I was diagnosed at 9 weeks. Cultured Pseudo once as a toddler, it went away came back at 6, first hospitilization at 8. Hospitalazied on and off sometimes once a year sometimes twice, sometimes not at all. Port placed at 15, because my veins were scarred and i decided i wanted it. Port removed at 21 not, working anymore, not hospitalized enough to make it worth while. Before anyone points out that I'm not the parent of a sick child, or any child, I would just like to say "I know that" no need to point it out. i realize it is much harder in a lot of respects to be the parent on this end of it. I'm just offering my perspective as it is.
 
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littledebbie

New member
I am so against this I don't know where to start. I just sort of addressed this in the adults folder too. I don't know when they developed this "how to treat CF" play book they seem to use, but it worries me that they are using our best weapons for no apparent reason. And what good is quartelry going to do? I think a lot of people on here could say they've gone a year or two without needing a hospitialization and then turned around and had a year where they were in three times. There is no ryhmye or reason, no strict plan for how this disease progresses. And why do Dr.'s get so blase about the fact this person is more than their disease. Why put this foreign object into a childs body to put them in the hospital 4 times a year at 2-3 weeks at a time, when they feel Fine!!! Arg!!!!!!! Quality of life people, let's keep our eye on the ball...quality of life. Hospitals are for when you are sick, really sick. It's called a tune-up. You wouldn't take your car in for a total engine rebuild when all it needs is an oil change. Oil change is maintanance....chest pt, inhalations, high cal diet, Dr.'d visits. Tune ups are iv's, heavy hitting antibiodicts, you're taking stuff apart to put it back together. And there's a mental toll to all those tune up, and you can ctach a lot of stuff in hospitals, and they will get resistant to these drugs that they will NEED one day.

Okay, so I guess I made my view clear...he he he, sorry over enthusiastic about this probably. So you know where I'm coming from I was diagnosed at 9 weeks. Cultured Pseudo once as a toddler, it went away came back at 6, first hospitilization at 8. Hospitalazied on and off sometimes once a year sometimes twice, sometimes not at all. Port placed at 15, because my veins were scarred and i decided i wanted it. Port removed at 21 not, working anymore, not hospitalized enough to make it worth while. Before anyone points out that I'm not the parent of a sick child, or any child, I would just like to say "I know that" no need to point it out. i realize it is much harder in a lot of respects to be the parent on this end of it. I'm just offering my perspective as it is.
 
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thelizardqueen

New member
The one and only time I was in hospital on IV I caught mono, and ended up being very sick for 5 months. Like Debbie said - you don't send your car in for a tuneup when its working fine. What you're doing with your child is working. Is he/she sick? - no? Then why put them in hospital on hard core drugs? This is just my opinion though. I know I'm not a mother taking care of her sick kid - but I am that sick kid. I've done great these past 24 years without needing to in for "tuneups". I've been on IV for an infection once in my life - 10 years ago, and I'm doing great. Think about how much your child will need these tuneups once they get worse. What if when they do get worse, they've built up a resistance to these drugs? Then what?
 
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thelizardqueen

New member
The one and only time I was in hospital on IV I caught mono, and ended up being very sick for 5 months. Like Debbie said - you don't send your car in for a tuneup when its working fine. What you're doing with your child is working. Is he/she sick? - no? Then why put them in hospital on hard core drugs? This is just my opinion though. I know I'm not a mother taking care of her sick kid - but I am that sick kid. I've done great these past 24 years without needing to in for "tuneups". I've been on IV for an infection once in my life - 10 years ago, and I'm doing great. Think about how much your child will need these tuneups once they get worse. What if when they do get worse, they've built up a resistance to these drugs? Then what?
 
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CFTwins

New member
I'm glad that you asked this question. I had been wondering about it too. Our docs also told us about the good results that Europeans are getting with this type of treatment. He had some great data and I can't remember all of the stats... essentially where this is happening there are no children who are colonizing pseudomonas and weight gain, etc. is better. Have you tried a Med Search for literature or asked your doctor to see any of the research?

I'm glad people raise the points about resistance, because that worries me too. It seems that this is a disease that in some ways responds to agressive treatment. Our doctor also pointed out that you have to weigh the benefit of the treatment to the "cost" in quality of life of being in the hospital so frequently. So... let us know what you decide to do.... tough choices.
 
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CFTwins

New member
I'm glad that you asked this question. I had been wondering about it too. Our docs also told us about the good results that Europeans are getting with this type of treatment. He had some great data and I can't remember all of the stats... essentially where this is happening there are no children who are colonizing pseudomonas and weight gain, etc. is better. Have you tried a Med Search for literature or asked your doctor to see any of the research?

I'm glad people raise the points about resistance, because that worries me too. It seems that this is a disease that in some ways responds to agressive treatment. Our doctor also pointed out that you have to weigh the benefit of the treatment to the "cost" in quality of life of being in the hospital so frequently. So... let us know what you decide to do.... tough choices.
 
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anonymous

New member
My son is 20 and has never gone in for "tuneups". He has done very well mind you- I would say his disease is mild. But I am glad that if he ever needs them he probably wont have a resistance to drugs. He was in the hospital twice as an infant- once for diagnosis and again for what turned out to be reflux related choking spells. He was in again at 5- bronchitis, 16- infection and 17 for stomach stuff. He also has had 2 sinus surgeries- overnight visits and an appendectomy. I have noticed that some docs are more prone to the tuneups- guess it is all in how you were trained.
 
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anonymous

New member
My son is 20 and has never gone in for "tuneups". He has done very well mind you- I would say his disease is mild. But I am glad that if he ever needs them he probably wont have a resistance to drugs. He was in the hospital twice as an infant- once for diagnosis and again for what turned out to be reflux related choking spells. He was in again at 5- bronchitis, 16- infection and 17 for stomach stuff. He also has had 2 sinus surgeries- overnight visits and an appendectomy. I have noticed that some docs are more prone to the tuneups- guess it is all in how you were trained.
 
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