Vest and Pedi

[AUradar]

I've been suprised about the lack of knowledge of CF in the pedicatric doctors. I know you say he's a family friend, but if he's a general peds doc, well, there's a reason why he doesn't treat your daughter for CF, thats not his speciality. If you're concerned with the issues your ped is raising then I would really urge you to do what your are doing, consulting the CF community, or seek a second opinion from a good CF doc.

Don't mean to come off harsh or negative.

As far as doing the vest without any current onset, as posted, the vest is to keep things from happening. Don't know how long you have been dealing with CF, but there is a school of thought out there that puts kids on 2-week IV tune-ups every 3 months. The theory??? Keep flair-ups from happening. They've done some studies which show lung scarring has occured before syptoms of flair-ups are present. That means reaction isn't enough, you have to be pro-active. There is a lot of controvesy over the tune-ups due to other issues, but the idea of being pro-active will help your child

 

[AUradar]

I've been suprised about the lack of knowledge of CF in the pedicatric doctors. I know you say he's a family friend, but if he's a general peds doc, well, there's a reason why he doesn't treat your daughter for CF, thats not his speciality. If you're concerned with the issues your ped is raising then I would really urge you to do what your are doing, consulting the CF community, or seek a second opinion from a good CF doc.

Don't mean to come off harsh or negative.

As far as doing the vest without any current onset, as posted, the vest is to keep things from happening. Don't know how long you have been dealing with CF, but there is a school of thought out there that puts kids on 2-week IV tune-ups every 3 months. The theory??? Keep flair-ups from happening. They've done some studies which show lung scarring has occured before syptoms of flair-ups are present. That means reaction isn't enough, you have to be pro-active. There is a lot of controvesy over the tune-ups due to other issues, but the idea of being pro-active will help your child

 

[AUradar]

I've been suprised about the lack of knowledge of CF in the pedicatric doctors. I know you say he's a family friend, but if he's a general peds doc, well, there's a reason why he doesn't treat your daughter for CF, thats not his speciality. If you're concerned with the issues your ped is raising then I would really urge you to do what your are doing, consulting the CF community, or seek a second opinion from a good CF doc.

Don't mean to come off harsh or negative.

As far as doing the vest without any current onset, as posted, the vest is to keep things from happening. Don't know how long you have been dealing with CF, but there is a school of thought out there that puts kids on 2-week IV tune-ups every 3 months. The theory??? Keep flair-ups from happening. They've done some studies which show lung scarring has occured before syptoms of flair-ups are present. That means reaction isn't enough, you have to be pro-active. There is a lot of controvesy over the tune-ups due to other issues, but the idea of being pro-active will help your child

 

[AUradar]

I've been suprised about the lack of knowledge of CF in the pedicatric doctors. I know you say he's a family friend, but if he's a general peds doc, well, there's a reason why he doesn't treat your daughter for CF, thats not his speciality. If you're concerned with the issues your ped is raising then I would really urge you to do what your are doing, consulting the CF community, or seek a second opinion from a good CF doc.

Don't mean to come off harsh or negative.

As far as doing the vest without any current onset, as posted, the vest is to keep things from happening. Don't know how long you have been dealing with CF, but there is a school of thought out there that puts kids on 2-week IV tune-ups every 3 months. The theory??? Keep flair-ups from happening. They've done some studies which show lung scarring has occured before syptoms of flair-ups are present. That means reaction isn't enough, you have to be pro-active. There is a lot of controvesy over the tune-ups due to other issues, but the idea of being pro-active will help your child

 

[AUradar]

I've been suprised about the lack of knowledge of CF in the pedicatric doctors. I know you say he's a family friend, but if he's a general peds doc, well, there's a reason why he doesn't treat your daughter for CF, thats not his speciality. If you're concerned with the issues your ped is raising then I would really urge you to do what your are doing, consulting the CF community, or seek a second opinion from a good CF doc.

Don't mean to come off harsh or negative.

As far as doing the vest without any current onset, as posted, the vest is to keep things from happening. Don't know how long you have been dealing with CF, but there is a school of thought out there that puts kids on 2-week IV tune-ups every 3 months. The theory??? Keep flair-ups from happening. They've done some studies which show lung scarring has occured before syptoms of flair-ups are present. That means reaction isn't enough, you have to be pro-active. There is a lot of controvesy over the tune-ups due to other issues, but the idea of being pro-active will help your child

 

[Mommafirst]

Hey Em, I'm sorry your trusted Pedi is questioning these treatments. I often start to wonder about how much time I'm taking out of Alyssa's every day when she doesn't really need it yet -- but then remember that I'd rather her sit with the vest 40 minutes a day and protect her lungs longer than ever feel I hadn't done enough to help her have the healthies lungs possible. I don't think our pedi knows about the vest or all the treatments we do. When Alyssa got off of IVs and I mentioned that her liver enzymes were elevated as a result, pedi said to me, "That's okay, CF doesn't impact the liver." At that point I stopped listening to anything CF related she had to say. CF most certainly could have or prompt liver issues -- so I realized this is not her area and I wasn't discussing CF with her anymore. Its too confusing to have multiple directives. And now that Alyssa's going to be 2, I probably will just do well child visits with the pedi.

 

[Mommafirst]

Hey Em, I'm sorry your trusted Pedi is questioning these treatments. I often start to wonder about how much time I'm taking out of Alyssa's every day when she doesn't really need it yet -- but then remember that I'd rather her sit with the vest 40 minutes a day and protect her lungs longer than ever feel I hadn't done enough to help her have the healthies lungs possible. I don't think our pedi knows about the vest or all the treatments we do. When Alyssa got off of IVs and I mentioned that her liver enzymes were elevated as a result, pedi said to me, "That's okay, CF doesn't impact the liver." At that point I stopped listening to anything CF related she had to say. CF most certainly could have or prompt liver issues -- so I realized this is not her area and I wasn't discussing CF with her anymore. Its too confusing to have multiple directives. And now that Alyssa's going to be 2, I probably will just do well child visits with the pedi.

 

[Mommafirst]

Hey Em, I'm sorry your trusted Pedi is questioning these treatments. I often start to wonder about how much time I'm taking out of Alyssa's every day when she doesn't really need it yet -- but then remember that I'd rather her sit with the vest 40 minutes a day and protect her lungs longer than ever feel I hadn't done enough to help her have the healthies lungs possible. I don't think our pedi knows about the vest or all the treatments we do. When Alyssa got off of IVs and I mentioned that her liver enzymes were elevated as a result, pedi said to me, "That's okay, CF doesn't impact the liver." At that point I stopped listening to anything CF related she had to say. CF most certainly could have or prompt liver issues -- so I realized this is not her area and I wasn't discussing CF with her anymore. Its too confusing to have multiple directives. And now that Alyssa's going to be 2, I probably will just do well child visits with the pedi.

 

[Mommafirst]

Hey Em, I'm sorry your trusted Pedi is questioning these treatments. I often start to wonder about how much time I'm taking out of Alyssa's every day when she doesn't really need it yet -- but then remember that I'd rather her sit with the vest 40 minutes a day and protect her lungs longer than ever feel I hadn't done enough to help her have the healthies lungs possible. I don't think our pedi knows about the vest or all the treatments we do. When Alyssa got off of IVs and I mentioned that her liver enzymes were elevated as a result, pedi said to me, "That's okay, CF doesn't impact the liver." At that point I stopped listening to anything CF related she had to say. CF most certainly could have or prompt liver issues -- so I realized this is not her area and I wasn't discussing CF with her anymore. Its too confusing to have multiple directives. And now that Alyssa's going to be 2, I probably will just do well child visits with the pedi.

 

[Mommafirst]

Hey Em, I'm sorry your trusted Pedi is questioning these treatments. I often start to wonder about how much time I'm taking out of Alyssa's every day when she doesn't really need it yet -- but then remember that I'd rather her sit with the vest 40 minutes a day and protect her lungs longer than ever feel I hadn't done enough to help her have the healthies lungs possible. I don't think our pedi knows about the vest or all the treatments we do. When Alyssa got off of IVs and I mentioned that her liver enzymes were elevated as a result, pedi said to me, "That's okay, CF doesn't impact the liver." At that point I stopped listening to anything CF related she had to say. CF most certainly could have or prompt liver issues -- so I realized this is not her area and I wasn't discussing CF with her anymore. Its too confusing to have multiple directives. And now that Alyssa's going to be 2, I probably will just do well child visits with the pedi.

 

[AbbysMama]

It is interesting how Abby will have two worlds of medical care. It just really stinks that we are 2.5 hours away from the CF clinic. We can't just jet up to Atlanta every time she sounds bad. I know that must sound horrible. Not willing to travel 300 miles (round-trip) every time she coughs...I feel like such a horrible mother.

As she gets older and if/when she presents clinical symptoms we may have to consider a move to the metro-Atlanta area. GROAN. I grew up in the hustle and bustle of metro Atlanta. The thought of moving back is just reprehensible to me. I LOVE visiting, I hated living there.

So what I understand is that for anything that seems stomach or lung related, we just need to contact the CF center. Earaches and other typical baby stuff, deal with the pedi. Now that she's 16 months, we shouldn't have to use the pedi too often. He was so gun-ho about preventative care for her that I just don't understand this change. Of course, I have to remind myself that I wasn't there for the conversation (it was between hubby and pedi at hubby's work) and that the pedi is moving from working directly with a group to his own practice, so some of the frustration that hubby heard might be stress related to the change. Who knows.

Sorry for the rambling.

Em

 

[AbbysMama]

It is interesting how Abby will have two worlds of medical care. It just really stinks that we are 2.5 hours away from the CF clinic. We can't just jet up to Atlanta every time she sounds bad. I know that must sound horrible. Not willing to travel 300 miles (round-trip) every time she coughs...I feel like such a horrible mother.

As she gets older and if/when she presents clinical symptoms we may have to consider a move to the metro-Atlanta area. GROAN. I grew up in the hustle and bustle of metro Atlanta. The thought of moving back is just reprehensible to me. I LOVE visiting, I hated living there.

So what I understand is that for anything that seems stomach or lung related, we just need to contact the CF center. Earaches and other typical baby stuff, deal with the pedi. Now that she's 16 months, we shouldn't have to use the pedi too often. He was so gun-ho about preventative care for her that I just don't understand this change. Of course, I have to remind myself that I wasn't there for the conversation (it was between hubby and pedi at hubby's work) and that the pedi is moving from working directly with a group to his own practice, so some of the frustration that hubby heard might be stress related to the change. Who knows.

Sorry for the rambling.

Em

 

[AbbysMama]

It is interesting how Abby will have two worlds of medical care. It just really stinks that we are 2.5 hours away from the CF clinic. We can't just jet up to Atlanta every time she sounds bad. I know that must sound horrible. Not willing to travel 300 miles (round-trip) every time she coughs...I feel like such a horrible mother.

As she gets older and if/when she presents clinical symptoms we may have to consider a move to the metro-Atlanta area. GROAN. I grew up in the hustle and bustle of metro Atlanta. The thought of moving back is just reprehensible to me. I LOVE visiting, I hated living there.

So what I understand is that for anything that seems stomach or lung related, we just need to contact the CF center. Earaches and other typical baby stuff, deal with the pedi. Now that she's 16 months, we shouldn't have to use the pedi too often. He was so gun-ho about preventative care for her that I just don't understand this change. Of course, I have to remind myself that I wasn't there for the conversation (it was between hubby and pedi at hubby's work) and that the pedi is moving from working directly with a group to his own practice, so some of the frustration that hubby heard might be stress related to the change. Who knows.

Sorry for the rambling.

Em

 

[AbbysMama]

It is interesting how Abby will have two worlds of medical care. It just really stinks that we are 2.5 hours away from the CF clinic. We can't just jet up to Atlanta every time she sounds bad. I know that must sound horrible. Not willing to travel 300 miles (round-trip) every time she coughs...I feel like such a horrible mother.

As she gets older and if/when she presents clinical symptoms we may have to consider a move to the metro-Atlanta area. GROAN. I grew up in the hustle and bustle of metro Atlanta. The thought of moving back is just reprehensible to me. I LOVE visiting, I hated living there.

So what I understand is that for anything that seems stomach or lung related, we just need to contact the CF center. Earaches and other typical baby stuff, deal with the pedi. Now that she's 16 months, we shouldn't have to use the pedi too often. He was so gun-ho about preventative care for her that I just don't understand this change. Of course, I have to remind myself that I wasn't there for the conversation (it was between hubby and pedi at hubby's work) and that the pedi is moving from working directly with a group to his own practice, so some of the frustration that hubby heard might be stress related to the change. Who knows.

Sorry for the rambling.

Em

 

[AbbysMama]

It is interesting how Abby will have two worlds of medical care. It just really stinks that we are 2.5 hours away from the CF clinic. We can't just jet up to Atlanta every time she sounds bad. I know that must sound horrible. Not willing to travel 300 miles (round-trip) every time she coughs...I feel like such a horrible mother.

As she gets older and if/when she presents clinical symptoms we may have to consider a move to the metro-Atlanta area. GROAN. I grew up in the hustle and bustle of metro Atlanta. The thought of moving back is just reprehensible to me. I LOVE visiting, I hated living there.

So what I understand is that for anything that seems stomach or lung related, we just need to contact the CF center. Earaches and other typical baby stuff, deal with the pedi. Now that she's 16 months, we shouldn't have to use the pedi too often. He was so gun-ho about preventative care for her that I just don't understand this change. Of course, I have to remind myself that I wasn't there for the conversation (it was between hubby and pedi at hubby's work) and that the pedi is moving from working directly with a group to his own practice, so some of the frustration that hubby heard might be stress related to the change. Who knows.

Sorry for the rambling.

Em

 

[Mommafirst]

Em -- if she gets cultured every three months at clinic and then develops a cough, they may just treat for what she was culturing the last clinic. Alyssa cultures staph. If she gets a cough and I call (and I'm only 15 minutes away) they call in an oral antibiotic to get things started. If it doesn't clear in about 10 days, then they'll want to see her. So you may be able to get the CF center to call in meds for you rather than hike up to the center at a moments notice.

 

[Mommafirst]

Em -- if she gets cultured every three months at clinic and then develops a cough, they may just treat for what she was culturing the last clinic. Alyssa cultures staph. If she gets a cough and I call (and I'm only 15 minutes away) they call in an oral antibiotic to get things started. If it doesn't clear in about 10 days, then they'll want to see her. So you may be able to get the CF center to call in meds for you rather than hike up to the center at a moments notice.

 

[Mommafirst]

Em -- if she gets cultured every three months at clinic and then develops a cough, they may just treat for what she was culturing the last clinic. Alyssa cultures staph. If she gets a cough and I call (and I'm only 15 minutes away) they call in an oral antibiotic to get things started. If it doesn't clear in about 10 days, then they'll want to see her. So you may be able to get the CF center to call in meds for you rather than hike up to the center at a moments notice.

 

[Mommafirst]

Em -- if she gets cultured every three months at clinic and then develops a cough, they may just treat for what she was culturing the last clinic. Alyssa cultures staph. If she gets a cough and I call (and I'm only 15 minutes away) they call in an oral antibiotic to get things started. If it doesn't clear in about 10 days, then they'll want to see her. So you may be able to get the CF center to call in meds for you rather than hike up to the center at a moments notice.

 

[Mommafirst]

Em -- if she gets cultured every three months at clinic and then develops a cough, they may just treat for what she was culturing the last clinic. Alyssa cultures staph. If she gets a cough and I call (and I'm only 15 minutes away) they call in an oral antibiotic to get things started. If it doesn't clear in about 10 days, then they'll want to see her. So you may be able to get the CF center to call in meds for you rather than hike up to the center at a moments notice.