tune ups??

J

JazzysMom

New member
Doctors vary on this idea. I tried tune ups for a bit in my twenties. Well actually twice and both times I ended up back in the hospital shortly after with true exacerbations.

I decided no more preventative tune ups. Now I go in when I have a flare up that cant be handled at home or on oral/nebbed antibiotics.

If she isnt culturing anything (when was her last culture btw?) that the antibiotics wont do much because there is nothing to fight.

SINCE the doctor who said this is NOT your regular doctor I would wait. Work hard on clearing her out with the vest etc. Check in with her regular doctor. Not all doctors in the same group are always on the same page and even when they are.....each patient is different.
 
J

JazzysMom

New member
Doctors vary on this idea. I tried tune ups for a bit in my twenties. Well actually twice and both times I ended up back in the hospital shortly after with true exacerbations.

I decided no more preventative tune ups. Now I go in when I have a flare up that cant be handled at home or on oral/nebbed antibiotics.

If she isnt culturing anything (when was her last culture btw?) that the antibiotics wont do much because there is nothing to fight.

SINCE the doctor who said this is NOT your regular doctor I would wait. Work hard on clearing her out with the vest etc. Check in with her regular doctor. Not all doctors in the same group are always on the same page and even when they are.....each patient is different.
 
J

JazzysMom

New member
Doctors vary on this idea. I tried tune ups for a bit in my twenties. Well actually twice and both times I ended up back in the hospital shortly after with true exacerbations.

I decided no more preventative tune ups. Now I go in when I have a flare up that cant be handled at home or on oral/nebbed antibiotics.

If she isnt culturing anything (when was her last culture btw?) that the antibiotics wont do much because there is nothing to fight.

SINCE the doctor who said this is NOT your regular doctor I would wait. Work hard on clearing her out with the vest etc. Check in with her regular doctor. Not all doctors in the same group are always on the same page and even when they are.....each patient is different.
 
J

JazzysMom

New member
Doctors vary on this idea. I tried tune ups for a bit in my twenties. Well actually twice and both times I ended up back in the hospital shortly after with true exacerbations.

I decided no more preventative tune ups. Now I go in when I have a flare up that cant be handled at home or on oral/nebbed antibiotics.

If she isnt culturing anything (when was her last culture btw?) that the antibiotics wont do much because there is nothing to fight.

SINCE the doctor who said this is NOT your regular doctor I would wait. Work hard on clearing her out with the vest etc. Check in with her regular doctor. Not all doctors in the same group are always on the same page and even when they are.....each patient is different.
 
B

blondelawyer

New member
Don't see tune ups as a bad thing...some doctors have their cfers have tune-up every three months regardless of what is going on. It is important to stay on top of everything. That being said, I COMPLETELY understand not wanting to go to the hospital with all of the germs, etc. Like Victoria suggested, check with the doctor to see about doing home IVs. That would let you control the germs. If not, have a discussion with the doctors about they want her to do a tune up and you can tell them your concerns. If she goes to the hospital be diligent about making sure that everyone washes hands/follows procedures, etc.

Also, it sounds like maybe you should talk to a doctor or therapist about your anxiety. I don't have a child with CF so I can't relate exactly, but my husband has CF so I do know about dealing with someone with this disease. It is hard to deal with for everyone involved. And your daughter needs you, so you need to do what you can do to take care of yourself--which may mean seeing or talking to someone about this. You have no doubt been through a lot in the past 5 years, so talking to a professional about it may be really beneficial.

Take care!
 
B

blondelawyer

New member
Don't see tune ups as a bad thing...some doctors have their cfers have tune-up every three months regardless of what is going on. It is important to stay on top of everything. That being said, I COMPLETELY understand not wanting to go to the hospital with all of the germs, etc. Like Victoria suggested, check with the doctor to see about doing home IVs. That would let you control the germs. If not, have a discussion with the doctors about they want her to do a tune up and you can tell them your concerns. If she goes to the hospital be diligent about making sure that everyone washes hands/follows procedures, etc.

Also, it sounds like maybe you should talk to a doctor or therapist about your anxiety. I don't have a child with CF so I can't relate exactly, but my husband has CF so I do know about dealing with someone with this disease. It is hard to deal with for everyone involved. And your daughter needs you, so you need to do what you can do to take care of yourself--which may mean seeing or talking to someone about this. You have no doubt been through a lot in the past 5 years, so talking to a professional about it may be really beneficial.

Take care!
 
B

blondelawyer

New member
Don't see tune ups as a bad thing...some doctors have their cfers have tune-up every three months regardless of what is going on. It is important to stay on top of everything. That being said, I COMPLETELY understand not wanting to go to the hospital with all of the germs, etc. Like Victoria suggested, check with the doctor to see about doing home IVs. That would let you control the germs. If not, have a discussion with the doctors about they want her to do a tune up and you can tell them your concerns. If she goes to the hospital be diligent about making sure that everyone washes hands/follows procedures, etc.

Also, it sounds like maybe you should talk to a doctor or therapist about your anxiety. I don't have a child with CF so I can't relate exactly, but my husband has CF so I do know about dealing with someone with this disease. It is hard to deal with for everyone involved. And your daughter needs you, so you need to do what you can do to take care of yourself--which may mean seeing or talking to someone about this. You have no doubt been through a lot in the past 5 years, so talking to a professional about it may be really beneficial.

Take care!
 
B

blondelawyer

New member
Don't see tune ups as a bad thing...some doctors have their cfers have tune-up every three months regardless of what is going on. It is important to stay on top of everything. That being said, I COMPLETELY understand not wanting to go to the hospital with all of the germs, etc. Like Victoria suggested, check with the doctor to see about doing home IVs. That would let you control the germs. If not, have a discussion with the doctors about they want her to do a tune up and you can tell them your concerns. If she goes to the hospital be diligent about making sure that everyone washes hands/follows procedures, etc.

Also, it sounds like maybe you should talk to a doctor or therapist about your anxiety. I don't have a child with CF so I can't relate exactly, but my husband has CF so I do know about dealing with someone with this disease. It is hard to deal with for everyone involved. And your daughter needs you, so you need to do what you can do to take care of yourself--which may mean seeing or talking to someone about this. You have no doubt been through a lot in the past 5 years, so talking to a professional about it may be really beneficial.

Take care!
 
B

blondelawyer

New member
Don't see tune ups as a bad thing...some doctors have their cfers have tune-up every three months regardless of what is going on. It is important to stay on top of everything. That being said, I COMPLETELY understand not wanting to go to the hospital with all of the germs, etc. Like Victoria suggested, check with the doctor to see about doing home IVs. That would let you control the germs. If not, have a discussion with the doctors about they want her to do a tune up and you can tell them your concerns. If she goes to the hospital be diligent about making sure that everyone washes hands/follows procedures, etc.

Also, it sounds like maybe you should talk to a doctor or therapist about your anxiety. I don't have a child with CF so I can't relate exactly, but my husband has CF so I do know about dealing with someone with this disease. It is hard to deal with for everyone involved. And your daughter needs you, so you need to do what you can do to take care of yourself--which may mean seeing or talking to someone about this. You have no doubt been through a lot in the past 5 years, so talking to a professional about it may be really beneficial.

Take care!
 
B

blondelawyer

New member
Don't see tune ups as a bad thing...some doctors have their cfers have tune-up every three months regardless of what is going on. It is important to stay on top of everything. That being said, I COMPLETELY understand not wanting to go to the hospital with all of the germs, etc. Like Victoria suggested, check with the doctor to see about doing home IVs. That would let you control the germs. If not, have a discussion with the doctors about they want her to do a tune up and you can tell them your concerns. If she goes to the hospital be diligent about making sure that everyone washes hands/follows procedures, etc.

Also, it sounds like maybe you should talk to a doctor or therapist about your anxiety. I don't have a child with CF so I can't relate exactly, but my husband has CF so I do know about dealing with someone with this disease. It is hard to deal with for everyone involved. And your daughter needs you, so you need to do what you can do to take care of yourself--which may mean seeing or talking to someone about this. You have no doubt been through a lot in the past 5 years, so talking to a professional about it may be really beneficial.

Take care!
 
Z

zoe4life

New member
Hello. I didn't reply to your first post last month, but I'm afraid I have to say something now. We also go to the Jax. clinic, and I have to say that you make them sound like idiots. You trying to blame them last month on your lack of knowledge about cf is ridiculous. When a child or anyone else in your life is diagnosed with something, it is YOUR responsibility to investigate, research, learn all you can about the disease. They are there to do all medical things neccessary for your daughter to stay as healthy as she can.

When you stated that you don't give her enzymes, treatments, etc... every single time she is supposed to have them....then don't even think about blaming your doctors for her situation.

As far as tune-ups, apparantly you haven't researched about them either. They are extremely beneficial to someone with cf. You need to grow-up for your daughters sake and quit whining about it bothering you about hospital bugs, etc... just to keep from getting a tune-up. If her doctors think she needs one, then she probably does. Unless you are still lying to them about giving her her meds and enzymes every single time.

I'm not normally an aggressive person, I just feel that you are not saying it like it really is. We have NEVER missed giving our child enzymes ( like you said about your daughter, it will make them have gi problems) or nebs or cpt.

Our clinic is an awesome clinic, we have great docs. You need to quit blaming them and start taking responsibility for yourself, know what you want to ask them, be ahead of them, do your own research!!

Have a nice day,
 
Z

zoe4life

New member
Hello. I didn't reply to your first post last month, but I'm afraid I have to say something now. We also go to the Jax. clinic, and I have to say that you make them sound like idiots. You trying to blame them last month on your lack of knowledge about cf is ridiculous. When a child or anyone else in your life is diagnosed with something, it is YOUR responsibility to investigate, research, learn all you can about the disease. They are there to do all medical things neccessary for your daughter to stay as healthy as she can.

When you stated that you don't give her enzymes, treatments, etc... every single time she is supposed to have them....then don't even think about blaming your doctors for her situation.

As far as tune-ups, apparantly you haven't researched about them either. They are extremely beneficial to someone with cf. You need to grow-up for your daughters sake and quit whining about it bothering you about hospital bugs, etc... just to keep from getting a tune-up. If her doctors think she needs one, then she probably does. Unless you are still lying to them about giving her her meds and enzymes every single time.

I'm not normally an aggressive person, I just feel that you are not saying it like it really is. We have NEVER missed giving our child enzymes ( like you said about your daughter, it will make them have gi problems) or nebs or cpt.

Our clinic is an awesome clinic, we have great docs. You need to quit blaming them and start taking responsibility for yourself, know what you want to ask them, be ahead of them, do your own research!!

Have a nice day,
 
Z

zoe4life

New member
Hello. I didn't reply to your first post last month, but I'm afraid I have to say something now. We also go to the Jax. clinic, and I have to say that you make them sound like idiots. You trying to blame them last month on your lack of knowledge about cf is ridiculous. When a child or anyone else in your life is diagnosed with something, it is YOUR responsibility to investigate, research, learn all you can about the disease. They are there to do all medical things neccessary for your daughter to stay as healthy as she can.

When you stated that you don't give her enzymes, treatments, etc... every single time she is supposed to have them....then don't even think about blaming your doctors for her situation.

As far as tune-ups, apparantly you haven't researched about them either. They are extremely beneficial to someone with cf. You need to grow-up for your daughters sake and quit whining about it bothering you about hospital bugs, etc... just to keep from getting a tune-up. If her doctors think she needs one, then she probably does. Unless you are still lying to them about giving her her meds and enzymes every single time.

I'm not normally an aggressive person, I just feel that you are not saying it like it really is. We have NEVER missed giving our child enzymes ( like you said about your daughter, it will make them have gi problems) or nebs or cpt.

Our clinic is an awesome clinic, we have great docs. You need to quit blaming them and start taking responsibility for yourself, know what you want to ask them, be ahead of them, do your own research!!

Have a nice day,
 
Z

zoe4life

New member
Hello. I didn't reply to your first post last month, but I'm afraid I have to say something now. We also go to the Jax. clinic, and I have to say that you make them sound like idiots. You trying to blame them last month on your lack of knowledge about cf is ridiculous. When a child or anyone else in your life is diagnosed with something, it is YOUR responsibility to investigate, research, learn all you can about the disease. They are there to do all medical things neccessary for your daughter to stay as healthy as she can.

When you stated that you don't give her enzymes, treatments, etc... every single time she is supposed to have them....then don't even think about blaming your doctors for her situation.

As far as tune-ups, apparantly you haven't researched about them either. They are extremely beneficial to someone with cf. You need to grow-up for your daughters sake and quit whining about it bothering you about hospital bugs, etc... just to keep from getting a tune-up. If her doctors think she needs one, then she probably does. Unless you are still lying to them about giving her her meds and enzymes every single time.

I'm not normally an aggressive person, I just feel that you are not saying it like it really is. We have NEVER missed giving our child enzymes ( like you said about your daughter, it will make them have gi problems) or nebs or cpt.

Our clinic is an awesome clinic, we have great docs. You need to quit blaming them and start taking responsibility for yourself, know what you want to ask them, be ahead of them, do your own research!!

Have a nice day,
 
Z

zoe4life

New member
Hello. I didn't reply to your first post last month, but I'm afraid I have to say something now. We also go to the Jax. clinic, and I have to say that you make them sound like idiots. You trying to blame them last month on your lack of knowledge about cf is ridiculous. When a child or anyone else in your life is diagnosed with something, it is YOUR responsibility to investigate, research, learn all you can about the disease. They are there to do all medical things neccessary for your daughter to stay as healthy as she can.

When you stated that you don't give her enzymes, treatments, etc... every single time she is supposed to have them....then don't even think about blaming your doctors for her situation.

As far as tune-ups, apparantly you haven't researched about them either. They are extremely beneficial to someone with cf. You need to grow-up for your daughters sake and quit whining about it bothering you about hospital bugs, etc... just to keep from getting a tune-up. If her doctors think she needs one, then she probably does. Unless you are still lying to them about giving her her meds and enzymes every single time.

I'm not normally an aggressive person, I just feel that you are not saying it like it really is. We have NEVER missed giving our child enzymes ( like you said about your daughter, it will make them have gi problems) or nebs or cpt.

Our clinic is an awesome clinic, we have great docs. You need to quit blaming them and start taking responsibility for yourself, know what you want to ask them, be ahead of them, do your own research!!

Have a nice day,
 
Z

zoe4life

New member
Hello. I didn't reply to your first post last month, but I'm afraid I have to say something now. We also go to the Jax. clinic, and I have to say that you make them sound like idiots. You trying to blame them last month on your lack of knowledge about cf is ridiculous. When a child or anyone else in your life is diagnosed with something, it is YOUR responsibility to investigate, research, learn all you can about the disease. They are there to do all medical things neccessary for your daughter to stay as healthy as she can.

When you stated that you don't give her enzymes, treatments, etc... every single time she is supposed to have them....then don't even think about blaming your doctors for her situation.

As far as tune-ups, apparantly you haven't researched about them either. They are extremely beneficial to someone with cf. You need to grow-up for your daughters sake and quit whining about it bothering you about hospital bugs, etc... just to keep from getting a tune-up. If her doctors think she needs one, then she probably does. Unless you are still lying to them about giving her her meds and enzymes every single time.

I'm not normally an aggressive person, I just feel that you are not saying it like it really is. We have NEVER missed giving our child enzymes ( like you said about your daughter, it will make them have gi problems) or nebs or cpt.

Our clinic is an awesome clinic, we have great docs. You need to quit blaming them and start taking responsibility for yourself, know what you want to ask them, be ahead of them, do your own research!!

Have a nice day,
 
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