extremely frustrated

T

tammykrumrey

Guest
I, too, ask for copies of culture reports/labs/x-ray/CT scans/PFTs, etc. I want to keep them in my records and I want to see them with my own eyes!

If it is staph, I think that is somewhat of a 'first' bug that a lot of little ones with CF culture. It was the first for my daughters to culture, and I was told that it is not something that is treated unless there are symptoms. And when they started culturing MRSA, I was told the same thing. But when there are symptoms, increased cough or whatever...they are treated immediately. As for leading to PA...well, Kayla has cultured it for years, and still no PA (although I am still waiting on her culture results<img src="i/expressions/face-icon-small-sad.gif" border="0"> )

And for the feeding. I do not know enought about goats milk, so I cannot say what may cause the CF dr to not like it. Hannah was on pregestimil sp??(it's been 8 years...) and it was VERY expensive. She went through so many cans of it each week thanks to her hardy appetite! But she did great on it. If you can get a presecription for it, that is great! I switched her to reg. whole milk as soon as we got the ok from her CF dr.

I do understand your frustration. Maybe you could do as Liza suggested, and meet with the diatician and the dr. to find out a game plan. I don't usuallly have any frustrations with our clinic. I tend to do a lot of research (and ask a lot of questions from people here-like you are doing) to be able to have a good conversation with our girls dr. regarding what would be the best care for them. I just feel like the dr. listens to me and knows that I have done my research and I feel like we are team working towards the same goal.

And when you mentioned the antibiotic, just in case...when my nephew was born, his CF dr at the time had him on a daily antibiotic-no matter what. I think that back 17-18 years ago the dr. thought it was to keep them from catching things...not sure.

But hang in there. Sounds like you are doing great!
 
T

tammykrumrey

Guest
I, too, ask for copies of culture reports/labs/x-ray/CT scans/PFTs, etc. I want to keep them in my records and I want to see them with my own eyes!

If it is staph, I think that is somewhat of a 'first' bug that a lot of little ones with CF culture. It was the first for my daughters to culture, and I was told that it is not something that is treated unless there are symptoms. And when they started culturing MRSA, I was told the same thing. But when there are symptoms, increased cough or whatever...they are treated immediately. As for leading to PA...well, Kayla has cultured it for years, and still no PA (although I am still waiting on her culture results<img src="i/expressions/face-icon-small-sad.gif" border="0"> )

And for the feeding. I do not know enought about goats milk, so I cannot say what may cause the CF dr to not like it. Hannah was on pregestimil sp??(it's been 8 years...) and it was VERY expensive. She went through so many cans of it each week thanks to her hardy appetite! But she did great on it. If you can get a presecription for it, that is great! I switched her to reg. whole milk as soon as we got the ok from her CF dr.

I do understand your frustration. Maybe you could do as Liza suggested, and meet with the diatician and the dr. to find out a game plan. I don't usuallly have any frustrations with our clinic. I tend to do a lot of research (and ask a lot of questions from people here-like you are doing) to be able to have a good conversation with our girls dr. regarding what would be the best care for them. I just feel like the dr. listens to me and knows that I have done my research and I feel like we are team working towards the same goal.

And when you mentioned the antibiotic, just in case...when my nephew was born, his CF dr at the time had him on a daily antibiotic-no matter what. I think that back 17-18 years ago the dr. thought it was to keep them from catching things...not sure.

But hang in there. Sounds like you are doing great!
 
T

tammykrumrey

Guest
I, too, ask for copies of culture reports/labs/x-ray/CT scans/PFTs, etc. I want to keep them in my records and I want to see them with my own eyes!

If it is staph, I think that is somewhat of a 'first' bug that a lot of little ones with CF culture. It was the first for my daughters to culture, and I was told that it is not something that is treated unless there are symptoms. And when they started culturing MRSA, I was told the same thing. But when there are symptoms, increased cough or whatever...they are treated immediately. As for leading to PA...well, Kayla has cultured it for years, and still no PA (although I am still waiting on her culture results<img src="i/expressions/face-icon-small-sad.gif" border="0"> )

And for the feeding. I do not know enought about goats milk, so I cannot say what may cause the CF dr to not like it. Hannah was on pregestimil sp??(it's been 8 years...) and it was VERY expensive. She went through so many cans of it each week thanks to her hardy appetite! But she did great on it. If you can get a presecription for it, that is great! I switched her to reg. whole milk as soon as we got the ok from her CF dr.

I do understand your frustration. Maybe you could do as Liza suggested, and meet with the diatician and the dr. to find out a game plan. I don't usuallly have any frustrations with our clinic. I tend to do a lot of research (and ask a lot of questions from people here-like you are doing) to be able to have a good conversation with our girls dr. regarding what would be the best care for them. I just feel like the dr. listens to me and knows that I have done my research and I feel like we are team working towards the same goal.

And when you mentioned the antibiotic, just in case...when my nephew was born, his CF dr at the time had him on a daily antibiotic-no matter what. I think that back 17-18 years ago the dr. thought it was to keep them from catching things...not sure.

But hang in there. Sounds like you are doing great!
 
T

tammykrumrey

Guest
I, too, ask for copies of culture reports/labs/x-ray/CT scans/PFTs, etc. I want to keep them in my records and I want to see them with my own eyes!

If it is staph, I think that is somewhat of a 'first' bug that a lot of little ones with CF culture. It was the first for my daughters to culture, and I was told that it is not something that is treated unless there are symptoms. And when they started culturing MRSA, I was told the same thing. But when there are symptoms, increased cough or whatever...they are treated immediately. As for leading to PA...well, Kayla has cultured it for years, and still no PA (although I am still waiting on her culture results<img src="i/expressions/face-icon-small-sad.gif" border="0"> )

And for the feeding. I do not know enought about goats milk, so I cannot say what may cause the CF dr to not like it. Hannah was on pregestimil sp??(it's been 8 years...) and it was VERY expensive. She went through so many cans of it each week thanks to her hardy appetite! But she did great on it. If you can get a presecription for it, that is great! I switched her to reg. whole milk as soon as we got the ok from her CF dr.

I do understand your frustration. Maybe you could do as Liza suggested, and meet with the diatician and the dr. to find out a game plan. I don't usuallly have any frustrations with our clinic. I tend to do a lot of research (and ask a lot of questions from people here-like you are doing) to be able to have a good conversation with our girls dr. regarding what would be the best care for them. I just feel like the dr. listens to me and knows that I have done my research and I feel like we are team working towards the same goal.

And when you mentioned the antibiotic, just in case...when my nephew was born, his CF dr at the time had him on a daily antibiotic-no matter what. I think that back 17-18 years ago the dr. thought it was to keep them from catching things...not sure.

But hang in there. Sounds like you are doing great!
 
T

tammykrumrey

Guest
I, too, ask for copies of culture reports/labs/x-ray/CT scans/PFTs, etc. I want to keep them in my records and I want to see them with my own eyes!
<br />
<br />If it is staph, I think that is somewhat of a 'first' bug that a lot of little ones with CF culture. It was the first for my daughters to culture, and I was told that it is not something that is treated unless there are symptoms. And when they started culturing MRSA, I was told the same thing. But when there are symptoms, increased cough or whatever...they are treated immediately. As for leading to PA...well, Kayla has cultured it for years, and still no PA (although I am still waiting on her culture results<img src="i/expressions/face-icon-small-sad.gif" border="0"> )
<br />
<br />And for the feeding. I do not know enought about goats milk, so I cannot say what may cause the CF dr to not like it. Hannah was on pregestimil sp??(it's been 8 years...) and it was VERY expensive. She went through so many cans of it each week thanks to her hardy appetite! But she did great on it. If you can get a presecription for it, that is great! I switched her to reg. whole milk as soon as we got the ok from her CF dr.
<br />
<br />I do understand your frustration. Maybe you could do as Liza suggested, and meet with the diatician and the dr. to find out a game plan. I don't usuallly have any frustrations with our clinic. I tend to do a lot of research (and ask a lot of questions from people here-like you are doing) to be able to have a good conversation with our girls dr. regarding what would be the best care for them. I just feel like the dr. listens to me and knows that I have done my research and I feel like we are team working towards the same goal.
<br />
<br />And when you mentioned the antibiotic, just in case...when my nephew was born, his CF dr at the time had him on a daily antibiotic-no matter what. I think that back 17-18 years ago the dr. thought it was to keep them from catching things...not sure.
<br />
<br />But hang in there. Sounds like you are doing great!
<br />
<br />
 
P

PlumPerfect

New member
thanks for the replys I am starting to feel better now. I love this forum it is soo helpful. my son is almost 3 months. Thanks for the info on vest, I wish they would at least discuss it with me.

the goats milk I found with my dd when she was allergic to whey in milk and also didn't tolerate soy. I have researched it well and I tried explaining it to the dr. but she was only into what she wanted. I am thinking I will discuss it with the dietitian next time, along with bringing info about it to them. I am not changing this he is doing fine. the thing is she said she was concerned about the risk factors of cf'ers having anemia but then said he needed more protein, isn't it iron that helps with anemia? he has rice cereal in every bottle that is iron fortified. I think it comes down to the fact that she doesn't know anything about it so she is going to nix it.

I will have to figure out how to request forms for now on, that is a good idea, thank you all
 
P

PlumPerfect

New member
thanks for the replys I am starting to feel better now. I love this forum it is soo helpful. my son is almost 3 months. Thanks for the info on vest, I wish they would at least discuss it with me.

the goats milk I found with my dd when she was allergic to whey in milk and also didn't tolerate soy. I have researched it well and I tried explaining it to the dr. but she was only into what she wanted. I am thinking I will discuss it with the dietitian next time, along with bringing info about it to them. I am not changing this he is doing fine. the thing is she said she was concerned about the risk factors of cf'ers having anemia but then said he needed more protein, isn't it iron that helps with anemia? he has rice cereal in every bottle that is iron fortified. I think it comes down to the fact that she doesn't know anything about it so she is going to nix it.

I will have to figure out how to request forms for now on, that is a good idea, thank you all
 
P

PlumPerfect

New member
thanks for the replys I am starting to feel better now. I love this forum it is soo helpful. my son is almost 3 months. Thanks for the info on vest, I wish they would at least discuss it with me.

the goats milk I found with my dd when she was allergic to whey in milk and also didn't tolerate soy. I have researched it well and I tried explaining it to the dr. but she was only into what she wanted. I am thinking I will discuss it with the dietitian next time, along with bringing info about it to them. I am not changing this he is doing fine. the thing is she said she was concerned about the risk factors of cf'ers having anemia but then said he needed more protein, isn't it iron that helps with anemia? he has rice cereal in every bottle that is iron fortified. I think it comes down to the fact that she doesn't know anything about it so she is going to nix it.

I will have to figure out how to request forms for now on, that is a good idea, thank you all
 
P

PlumPerfect

New member
thanks for the replys I am starting to feel better now. I love this forum it is soo helpful. my son is almost 3 months. Thanks for the info on vest, I wish they would at least discuss it with me.

the goats milk I found with my dd when she was allergic to whey in milk and also didn't tolerate soy. I have researched it well and I tried explaining it to the dr. but she was only into what she wanted. I am thinking I will discuss it with the dietitian next time, along with bringing info about it to them. I am not changing this he is doing fine. the thing is she said she was concerned about the risk factors of cf'ers having anemia but then said he needed more protein, isn't it iron that helps with anemia? he has rice cereal in every bottle that is iron fortified. I think it comes down to the fact that she doesn't know anything about it so she is going to nix it.

I will have to figure out how to request forms for now on, that is a good idea, thank you all
 
P

PlumPerfect

New member
thanks for the replys I am starting to feel better now. I love this forum it is soo helpful. my son is almost 3 months. Thanks for the info on vest, I wish they would at least discuss it with me.
<br />
<br />the goats milk I found with my dd when she was allergic to whey in milk and also didn't tolerate soy. I have researched it well and I tried explaining it to the dr. but she was only into what she wanted. I am thinking I will discuss it with the dietitian next time, along with bringing info about it to them. I am not changing this he is doing fine. the thing is she said she was concerned about the risk factors of cf'ers having anemia but then said he needed more protein, isn't it iron that helps with anemia? he has rice cereal in every bottle that is iron fortified. I think it comes down to the fact that she doesn't know anything about it so she is going to nix it.
<br />
<br />I will have to figure out how to request forms for now on, that is a good idea, thank you all
 
J

Juliet

New member
I've cultured Staph Aureus since the early 1980s. Since I had so many episodes of "bronchitis" as a kid, I'm guessing I probably had it years before then, but my first culture ever was when I was a teenager. I've never cultured Pseudo.

The way I heard it explained is that the pH of the mucus in the lungs are affected by the bugs. Something to do with how they metabolize and reproduce and then 'break down' when attacked by our immune system. Supposedly Staph makes the pH go one way, whereas pseudo finds the other pH more 'inviting'. Hence the seeming ability of Staph to help hold PA at bay. I asked my Doc at Johns Hopkins about that theory. He said there have been some studies on the subject, but he's not aware of any definitive conclusions or statistically significant scientific proof one way or the other.
 
J

Juliet

New member
I've cultured Staph Aureus since the early 1980s. Since I had so many episodes of "bronchitis" as a kid, I'm guessing I probably had it years before then, but my first culture ever was when I was a teenager. I've never cultured Pseudo.

The way I heard it explained is that the pH of the mucus in the lungs are affected by the bugs. Something to do with how they metabolize and reproduce and then 'break down' when attacked by our immune system. Supposedly Staph makes the pH go one way, whereas pseudo finds the other pH more 'inviting'. Hence the seeming ability of Staph to help hold PA at bay. I asked my Doc at Johns Hopkins about that theory. He said there have been some studies on the subject, but he's not aware of any definitive conclusions or statistically significant scientific proof one way or the other.
 
J

Juliet

New member
I've cultured Staph Aureus since the early 1980s. Since I had so many episodes of "bronchitis" as a kid, I'm guessing I probably had it years before then, but my first culture ever was when I was a teenager. I've never cultured Pseudo.

The way I heard it explained is that the pH of the mucus in the lungs are affected by the bugs. Something to do with how they metabolize and reproduce and then 'break down' when attacked by our immune system. Supposedly Staph makes the pH go one way, whereas pseudo finds the other pH more 'inviting'. Hence the seeming ability of Staph to help hold PA at bay. I asked my Doc at Johns Hopkins about that theory. He said there have been some studies on the subject, but he's not aware of any definitive conclusions or statistically significant scientific proof one way or the other.
 
J

Juliet

New member
I've cultured Staph Aureus since the early 1980s. Since I had so many episodes of "bronchitis" as a kid, I'm guessing I probably had it years before then, but my first culture ever was when I was a teenager. I've never cultured Pseudo.

The way I heard it explained is that the pH of the mucus in the lungs are affected by the bugs. Something to do with how they metabolize and reproduce and then 'break down' when attacked by our immune system. Supposedly Staph makes the pH go one way, whereas pseudo finds the other pH more 'inviting'. Hence the seeming ability of Staph to help hold PA at bay. I asked my Doc at Johns Hopkins about that theory. He said there have been some studies on the subject, but he's not aware of any definitive conclusions or statistically significant scientific proof one way or the other.
 
J

Juliet

New member
I've cultured Staph Aureus since the early 1980s. Since I had so many episodes of "bronchitis" as a kid, I'm guessing I probably had it years before then, but my first culture ever was when I was a teenager. I've never cultured Pseudo.
<br />
<br />The way I heard it explained is that the pH of the mucus in the lungs are affected by the bugs. Something to do with how they metabolize and reproduce and then 'break down' when attacked by our immune system. Supposedly Staph makes the pH go one way, whereas pseudo finds the other pH more 'inviting'. Hence the seeming ability of Staph to help hold PA at bay. I asked my Doc at Johns Hopkins about that theory. He said there have been some studies on the subject, but he's not aware of any definitive conclusions or statistically significant scientific proof one way or the other.
 
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