extremely frustrated

PlumPerfect · Aug 27, 2008

so we tell them first thing that we are interested in a vest and we measured his chest already and he is 16 inches( which 2 weeks ago one of the nurses said it had to be at least 13) the nurse today says well thats good I think they have to be 19 or 21 inches and blew it off...grrr
then our dr comes in and tells us she doesn't agree with the gaots milk ( which I already knew she wouldn't but he isn't tolerating anything else, plus we really believe in it) she tell us to try him on progestimil (sp?) and they would have to see if insurance covers it. we still told her that we are happy with our chice and don't want to put him through all the issues he was having on formula. she tell us use this first then if that doesn't work she will let us use the goats milk ( "let" , whatever ) and then they didn't tell us where to get it or give a prescription for it or anything.
After that she said his throat cultures came back with ( i can not recal what it was ) staph something or other and its a common things with cf children who have high numbers... if anyone knows what she was talking about i would like to know but don't really want to call the office.. she says its what lead to psudemones (sp?) in adults and causes illnesses...

if anyone has any answers it would help.

also is this this common to be this frustrated with you clinic.
from what i know our dr. is one of the best, she has never made a mistake in her carreer and so on.. but she has such a poor bedside mannor. people keep telling me she is great you just have to ignor that part.. but man do i just want to scream right now

the whole reason she wants him off goats milk is because people with cf are prone to be anemic and she wants him to have more protien.. he is 13 1/2 pounds and his vitamin levels have always came back great so she keep trying to pump him up with things he doesn't need, like the 21 day antibiotic when he wasn't even sick, bbut just incase... is this really normal?

sorry this is a little rantish I am just so frustrated right now..

PlumPerfect · Aug 27, 2008

so we tell them first thing that we are interested in a vest and we measured his chest already and he is 16 inches( which 2 weeks ago one of the nurses said it had to be at least 13) the nurse today says well thats good I think they have to be 19 or 21 inches and blew it off...grrr
then our dr comes in and tells us she doesn't agree with the gaots milk ( which I already knew she wouldn't but he isn't tolerating anything else, plus we really believe in it) she tell us to try him on progestimil (sp?) and they would have to see if insurance covers it. we still told her that we are happy with our chice and don't want to put him through all the issues he was having on formula. she tell us use this first then if that doesn't work she will let us use the goats milk ( "let" , whatever ) and then they didn't tell us where to get it or give a prescription for it or anything.
After that she said his throat cultures came back with ( i can not recal what it was ) staph something or other and its a common things with cf children who have high numbers... if anyone knows what she was talking about i would like to know but don't really want to call the office.. she says its what lead to psudemones (sp?) in adults and causes illnesses...

if anyone has any answers it would help.

also is this this common to be this frustrated with you clinic.
from what i know our dr. is one of the best, she has never made a mistake in her carreer and so on.. but she has such a poor bedside mannor. people keep telling me she is great you just have to ignor that part.. but man do i just want to scream right now

the whole reason she wants him off goats milk is because people with cf are prone to be anemic and she wants him to have more protien.. he is 13 1/2 pounds and his vitamin levels have always came back great so she keep trying to pump him up with things he doesn't need, like the 21 day antibiotic when he wasn't even sick, bbut just incase... is this really normal?

sorry this is a little rantish I am just so frustrated right now..

PlumPerfect · Aug 27, 2008

so we tell them first thing that we are interested in a vest and we measured his chest already and he is 16 inches( which 2 weeks ago one of the nurses said it had to be at least 13) the nurse today says well thats good I think they have to be 19 or 21 inches and blew it off...grrr
then our dr comes in and tells us she doesn't agree with the gaots milk ( which I already knew she wouldn't but he isn't tolerating anything else, plus we really believe in it) she tell us to try him on progestimil (sp?) and they would have to see if insurance covers it. we still told her that we are happy with our chice and don't want to put him through all the issues he was having on formula. she tell us use this first then if that doesn't work she will let us use the goats milk ( "let" , whatever ) and then they didn't tell us where to get it or give a prescription for it or anything.
After that she said his throat cultures came back with ( i can not recal what it was ) staph something or other and its a common things with cf children who have high numbers... if anyone knows what she was talking about i would like to know but don't really want to call the office.. she says its what lead to psudemones (sp?) in adults and causes illnesses...

if anyone has any answers it would help.

also is this this common to be this frustrated with you clinic.
from what i know our dr. is one of the best, she has never made a mistake in her carreer and so on.. but she has such a poor bedside mannor. people keep telling me she is great you just have to ignor that part.. but man do i just want to scream right now

the whole reason she wants him off goats milk is because people with cf are prone to be anemic and she wants him to have more protien.. he is 13 1/2 pounds and his vitamin levels have always came back great so she keep trying to pump him up with things he doesn't need, like the 21 day antibiotic when he wasn't even sick, bbut just incase... is this really normal?

sorry this is a little rantish I am just so frustrated right now..

PlumPerfect · Aug 27, 2008

so we tell them first thing that we are interested in a vest and we measured his chest already and he is 16 inches( which 2 weeks ago one of the nurses said it had to be at least 13) the nurse today says well thats good I think they have to be 19 or 21 inches and blew it off...grrr
then our dr comes in and tells us she doesn't agree with the gaots milk ( which I already knew she wouldn't but he isn't tolerating anything else, plus we really believe in it) she tell us to try him on progestimil (sp?) and they would have to see if insurance covers it. we still told her that we are happy with our chice and don't want to put him through all the issues he was having on formula. she tell us use this first then if that doesn't work she will let us use the goats milk ( "let" , whatever ) and then they didn't tell us where to get it or give a prescription for it or anything.
After that she said his throat cultures came back with ( i can not recal what it was ) staph something or other and its a common things with cf children who have high numbers... if anyone knows what she was talking about i would like to know but don't really want to call the office.. she says its what lead to psudemones (sp?) in adults and causes illnesses...

if anyone has any answers it would help.

also is this this common to be this frustrated with you clinic.
from what i know our dr. is one of the best, she has never made a mistake in her carreer and so on.. but she has such a poor bedside mannor. people keep telling me she is great you just have to ignor that part.. but man do i just want to scream right now

the whole reason she wants him off goats milk is because people with cf are prone to be anemic and she wants him to have more protien.. he is 13 1/2 pounds and his vitamin levels have always came back great so she keep trying to pump him up with things he doesn't need, like the 21 day antibiotic when he wasn't even sick, bbut just incase... is this really normal?

sorry this is a little rantish I am just so frustrated right now..

PlumPerfect · Aug 27, 2008

so we tell them first thing that we are interested in a vest and we measured his chest already and he is 16 inches( which 2 weeks ago one of the nurses said it had to be at least 13) the nurse today says well thats good I think they have to be 19 or 21 inches and blew it off...grrr
 then our dr comes in and tells us she doesn't agree with the gaots milk ( which I already knew she wouldn't but he isn't tolerating anything else, plus we really believe in it) she tell us to try him on progestimil (sp?) and they would have to see if insurance covers it. we still told her that we are happy with our chice and don't want to put him through all the issues he was having on formula. she tell us use this first then if that doesn't work she will let us use the goats milk ( "let" , whatever ) and then they didn't tell us where to get it or give a prescription for it or anything.
 After that she said his throat cultures came back with ( i can not recal what it was ) staph something or other and its a common things with cf children who have high numbers... if anyone knows what she was talking about i would like to know but don't really want to call the office.. she says its what lead to psudemones (sp?) in adults and causes illnesses...
 
 if anyone has any answers it would help.
 
 also is this this common to be this frustrated with you clinic.
 from what i know our dr. is one of the best, she has never made a mistake in her carreer and so on.. but she has such a poor bedside mannor. people keep telling me she is great you just have to ignor that part.. but man do i just want to scream right now
 
 the whole reason she wants him off goats milk is because people with cf are prone to be anemic and she wants him to have more protien.. he is 13 1/2 pounds and his vitamin levels have always came back great so she keep trying to pump him up with things he doesn't need, like the 21 day antibiotic when he wasn't even sick, bbut just incase... is this really normal?
 
 sorry this is a little rantish I am just so frustrated right now..

Ratatosk · Aug 27, 2008

DS had to be 19" for the small size hill-rom vest; however, I believe they now make an extra small size as does repirtech.

As for lab results, I always send in a request for information form. I believe most clinics have them on their webpage. I request clinic notes, xray reports, labs, etc. so I can see for myself what they say. I've had nurses call to say everything is fine, only to read that DS is culturing something.

DS hated pregestimil, but I know several children do fine on it. We opted for infamil lipil because that's what he was on prior to being diagnosed and we knew he liked that. Locally they were forever trying to get us to switch back to it, but his doctor in the City said to feed him what he'll eat. He wasn't EATING the pregistimil and would scream and try to escape if the bottle came at him. I tasted it, too -- tasted like vomit and they way roadkill smells. Bleah. But I imagine your doctor is concerned with maybe not getting proper nutrition. Maybe see if you can visit with the dietician at your clinic and have them do an analysis on it -- what he may or may not be getting nutritionally and calorie-wise.

As for frustration with your CF clinic. Locally, it's a constant, because they're not proactive enough. And I hesitate to say they're reactive because they're not concerned with culture, lab and xray results, whereas our primary CF doctor in the City is very aggressive. Half the time at the local clinic, I leave feeling pretty angry because the doctor pretty much criticizes everything we do -- big ego -- doesn't like that we go elsewhere for DS' cf care.

Ratatosk · Aug 27, 2008

DS had to be 19" for the small size hill-rom vest; however, I believe they now make an extra small size as does repirtech.

As for lab results, I always send in a request for information form. I believe most clinics have them on their webpage. I request clinic notes, xray reports, labs, etc. so I can see for myself what they say. I've had nurses call to say everything is fine, only to read that DS is culturing something.

DS hated pregestimil, but I know several children do fine on it. We opted for infamil lipil because that's what he was on prior to being diagnosed and we knew he liked that. Locally they were forever trying to get us to switch back to it, but his doctor in the City said to feed him what he'll eat. He wasn't EATING the pregistimil and would scream and try to escape if the bottle came at him. I tasted it, too -- tasted like vomit and they way roadkill smells. Bleah. But I imagine your doctor is concerned with maybe not getting proper nutrition. Maybe see if you can visit with the dietician at your clinic and have them do an analysis on it -- what he may or may not be getting nutritionally and calorie-wise.

As for frustration with your CF clinic. Locally, it's a constant, because they're not proactive enough. And I hesitate to say they're reactive because they're not concerned with culture, lab and xray results, whereas our primary CF doctor in the City is very aggressive. Half the time at the local clinic, I leave feeling pretty angry because the doctor pretty much criticizes everything we do -- big ego -- doesn't like that we go elsewhere for DS' cf care.

Ratatosk · Aug 27, 2008

DS had to be 19" for the small size hill-rom vest; however, I believe they now make an extra small size as does repirtech.

As for lab results, I always send in a request for information form. I believe most clinics have them on their webpage. I request clinic notes, xray reports, labs, etc. so I can see for myself what they say. I've had nurses call to say everything is fine, only to read that DS is culturing something.

DS hated pregestimil, but I know several children do fine on it. We opted for infamil lipil because that's what he was on prior to being diagnosed and we knew he liked that. Locally they were forever trying to get us to switch back to it, but his doctor in the City said to feed him what he'll eat. He wasn't EATING the pregistimil and would scream and try to escape if the bottle came at him. I tasted it, too -- tasted like vomit and they way roadkill smells. Bleah. But I imagine your doctor is concerned with maybe not getting proper nutrition. Maybe see if you can visit with the dietician at your clinic and have them do an analysis on it -- what he may or may not be getting nutritionally and calorie-wise.

As for frustration with your CF clinic. Locally, it's a constant, because they're not proactive enough. And I hesitate to say they're reactive because they're not concerned with culture, lab and xray results, whereas our primary CF doctor in the City is very aggressive. Half the time at the local clinic, I leave feeling pretty angry because the doctor pretty much criticizes everything we do -- big ego -- doesn't like that we go elsewhere for DS' cf care.

Ratatosk · Aug 27, 2008

DS had to be 19" for the small size hill-rom vest; however, I believe they now make an extra small size as does repirtech.

As for lab results, I always send in a request for information form. I believe most clinics have them on their webpage. I request clinic notes, xray reports, labs, etc. so I can see for myself what they say. I've had nurses call to say everything is fine, only to read that DS is culturing something.

DS hated pregestimil, but I know several children do fine on it. We opted for infamil lipil because that's what he was on prior to being diagnosed and we knew he liked that. Locally they were forever trying to get us to switch back to it, but his doctor in the City said to feed him what he'll eat. He wasn't EATING the pregistimil and would scream and try to escape if the bottle came at him. I tasted it, too -- tasted like vomit and they way roadkill smells. Bleah. But I imagine your doctor is concerned with maybe not getting proper nutrition. Maybe see if you can visit with the dietician at your clinic and have them do an analysis on it -- what he may or may not be getting nutritionally and calorie-wise.

As for frustration with your CF clinic. Locally, it's a constant, because they're not proactive enough. And I hesitate to say they're reactive because they're not concerned with culture, lab and xray results, whereas our primary CF doctor in the City is very aggressive. Half the time at the local clinic, I leave feeling pretty angry because the doctor pretty much criticizes everything we do -- big ego -- doesn't like that we go elsewhere for DS' cf care.

Ratatosk · Aug 27, 2008

DS had to be 19" for the small size hill-rom vest; however, I believe they now make an extra small size as does repirtech.
 
 As for lab results, I always send in a request for information form. I believe most clinics have them on their webpage. I request clinic notes, xray reports, labs, etc. so I can see for myself what they say. I've had nurses call to say everything is fine, only to read that DS is culturing something.
 
 DS hated pregestimil, but I know several children do fine on it. We opted for infamil lipil because that's what he was on prior to being diagnosed and we knew he liked that. Locally they were forever trying to get us to switch back to it, but his doctor in the City said to feed him what he'll eat. He wasn't EATING the pregistimil and would scream and try to escape if the bottle came at him. I tasted it, too -- tasted like vomit and they way roadkill smells. Bleah. But I imagine your doctor is concerned with maybe not getting proper nutrition. Maybe see if you can visit with the dietician at your clinic and have them do an analysis on it -- what he may or may not be getting nutritionally and calorie-wise.
 
 As for frustration with your CF clinic. Locally, it's a constant, because they're not proactive enough. And I hesitate to say they're reactive because they're not concerned with culture, lab and xray results, whereas our primary CF doctor in the City is very aggressive. Half the time at the local clinic, I leave feeling pretty angry because the doctor pretty much criticizes everything we do -- big ego -- doesn't like that we go elsewhere for DS' cf care.

Mommafirst · Aug 27, 2008

First, if your siggy is correct and your ds is only 2 months old, the clinic probably thinks he's too young for even the smallest vest. I'd be concerned that young as well, because you could cause shaken baby issues, kwim. We got ours when my dd was 14 months old and our doctor thought that was a bit young, though he was totally supportive when the RT said she could push it through. Our clinic usually waits until 2 years old for the vest.

My daughter has always cultured staph. It doesn't really bother her, even when she gets a cold it rarely exacerbates into a cough. When they culture something chronically like this, it is pretty normal to call in a 21 day course of antibiotics when they get sick. It seems excessive, but IMO its better than three weeks on IVs.

The issue with staph, from what I've read, is that it actually is better to leave it be unless it is causing a cough. The reasoning is that if the staph is in control it keep pseudomonas at bay, but when you kill off the staph the pseudomonas can grow at a faster rate. My dd doesn't culture pseudomonas yet, but my understanding is that 80% of all CFers will culture it by age 18.

As for the goats milk...BLAH! I think you should do what you feel is best for your child. The doctors are VERY important for good CF care, but if he drinks it and does well on it and his vitamin levels are all holding steady, I don't really see why you should switch to a less organic ingredient. In a few months you'll be able to start real food and can make sure he gets lots of protein that way.

The relationship you have with your CF team is super important. Feeling frustrated and underinformed is probably par for the course in the early days, but if over time you don't feel heard and informed, then you might have to move on to another doctor on the team. Hang in there, this is all still very new and you are doing an awesome job -- it will all come together.

Mommafirst · Aug 27, 2008

First, if your siggy is correct and your ds is only 2 months old, the clinic probably thinks he's too young for even the smallest vest. I'd be concerned that young as well, because you could cause shaken baby issues, kwim. We got ours when my dd was 14 months old and our doctor thought that was a bit young, though he was totally supportive when the RT said she could push it through. Our clinic usually waits until 2 years old for the vest.

My daughter has always cultured staph. It doesn't really bother her, even when she gets a cold it rarely exacerbates into a cough. When they culture something chronically like this, it is pretty normal to call in a 21 day course of antibiotics when they get sick. It seems excessive, but IMO its better than three weeks on IVs.

The issue with staph, from what I've read, is that it actually is better to leave it be unless it is causing a cough. The reasoning is that if the staph is in control it keep pseudomonas at bay, but when you kill off the staph the pseudomonas can grow at a faster rate. My dd doesn't culture pseudomonas yet, but my understanding is that 80% of all CFers will culture it by age 18.

As for the goats milk...BLAH! I think you should do what you feel is best for your child. The doctors are VERY important for good CF care, but if he drinks it and does well on it and his vitamin levels are all holding steady, I don't really see why you should switch to a less organic ingredient. In a few months you'll be able to start real food and can make sure he gets lots of protein that way.

The relationship you have with your CF team is super important. Feeling frustrated and underinformed is probably par for the course in the early days, but if over time you don't feel heard and informed, then you might have to move on to another doctor on the team. Hang in there, this is all still very new and you are doing an awesome job -- it will all come together.

Mommafirst · Aug 27, 2008

First, if your siggy is correct and your ds is only 2 months old, the clinic probably thinks he's too young for even the smallest vest. I'd be concerned that young as well, because you could cause shaken baby issues, kwim. We got ours when my dd was 14 months old and our doctor thought that was a bit young, though he was totally supportive when the RT said she could push it through. Our clinic usually waits until 2 years old for the vest.

My daughter has always cultured staph. It doesn't really bother her, even when she gets a cold it rarely exacerbates into a cough. When they culture something chronically like this, it is pretty normal to call in a 21 day course of antibiotics when they get sick. It seems excessive, but IMO its better than three weeks on IVs.

The issue with staph, from what I've read, is that it actually is better to leave it be unless it is causing a cough. The reasoning is that if the staph is in control it keep pseudomonas at bay, but when you kill off the staph the pseudomonas can grow at a faster rate. My dd doesn't culture pseudomonas yet, but my understanding is that 80% of all CFers will culture it by age 18.

As for the goats milk...BLAH! I think you should do what you feel is best for your child. The doctors are VERY important for good CF care, but if he drinks it and does well on it and his vitamin levels are all holding steady, I don't really see why you should switch to a less organic ingredient. In a few months you'll be able to start real food and can make sure he gets lots of protein that way.

The relationship you have with your CF team is super important. Feeling frustrated and underinformed is probably par for the course in the early days, but if over time you don't feel heard and informed, then you might have to move on to another doctor on the team. Hang in there, this is all still very new and you are doing an awesome job -- it will all come together.

Mommafirst · Aug 27, 2008

First, if your siggy is correct and your ds is only 2 months old, the clinic probably thinks he's too young for even the smallest vest. I'd be concerned that young as well, because you could cause shaken baby issues, kwim. We got ours when my dd was 14 months old and our doctor thought that was a bit young, though he was totally supportive when the RT said she could push it through. Our clinic usually waits until 2 years old for the vest.

My daughter has always cultured staph. It doesn't really bother her, even when she gets a cold it rarely exacerbates into a cough. When they culture something chronically like this, it is pretty normal to call in a 21 day course of antibiotics when they get sick. It seems excessive, but IMO its better than three weeks on IVs.

The issue with staph, from what I've read, is that it actually is better to leave it be unless it is causing a cough. The reasoning is that if the staph is in control it keep pseudomonas at bay, but when you kill off the staph the pseudomonas can grow at a faster rate. My dd doesn't culture pseudomonas yet, but my understanding is that 80% of all CFers will culture it by age 18.

As for the goats milk...BLAH! I think you should do what you feel is best for your child. The doctors are VERY important for good CF care, but if he drinks it and does well on it and his vitamin levels are all holding steady, I don't really see why you should switch to a less organic ingredient. In a few months you'll be able to start real food and can make sure he gets lots of protein that way.

The relationship you have with your CF team is super important. Feeling frustrated and underinformed is probably par for the course in the early days, but if over time you don't feel heard and informed, then you might have to move on to another doctor on the team. Hang in there, this is all still very new and you are doing an awesome job -- it will all come together.

Mommafirst · Aug 27, 2008

First, if your siggy is correct and your ds is only 2 months old, the clinic probably thinks he's too young for even the smallest vest. I'd be concerned that young as well, because you could cause shaken baby issues, kwim. We got ours when my dd was 14 months old and our doctor thought that was a bit young, though he was totally supportive when the RT said she could push it through. Our clinic usually waits until 2 years old for the vest.
 
 My daughter has always cultured staph. It doesn't really bother her, even when she gets a cold it rarely exacerbates into a cough. When they culture something chronically like this, it is pretty normal to call in a 21 day course of antibiotics when they get sick. It seems excessive, but IMO its better than three weeks on IVs.
 
 The issue with staph, from what I've read, is that it actually is better to leave it be unless it is causing a cough. The reasoning is that if the staph is in control it keep pseudomonas at bay, but when you kill off the staph the pseudomonas can grow at a faster rate. My dd doesn't culture pseudomonas yet, but my understanding is that 80% of all CFers will culture it by age 18.
 
 As for the goats milk...BLAH! I think you should do what you feel is best for your child. The doctors are VERY important for good CF care, but if he drinks it and does well on it and his vitamin levels are all holding steady, I don't really see why you should switch to a less organic ingredient. In a few months you'll be able to start real food and can make sure he gets lots of protein that way.
 
 The relationship you have with your CF team is super important. Feeling frustrated and underinformed is probably par for the course in the early days, but if over time you don't feel heard and informed, then you might have to move on to another doctor on the team. Hang in there, this is all still very new and you are doing an awesome job -- it will all come together.

ehtansky21 · Aug 27, 2008

Hello Plumperfect,
How old is your son???? Are you breastfeeding at all or is the goats milk where he will be getting his primary nutrients???? You can really add nutrients into the foods if he is eating some solids. You can also add stuff into the goats milk....coconut milk and flax oil/seed is really good with the fat content and health benefits...
AS for throat cultures. I always ask for a copy of the results and put it in my notebook for each of my kids. As I understand, Staph is almost good to have, because it kind of scares off the rest of the really bad bacterias, such as pseudomonas. My oldest always cultures staph and the only time they really treat it is when he is actually sick.
I do get really frustrated with the CF clinic and I have to check myself and make sure I am not just in denial of where the kids are at in there health (I am resistant to doing treatment that is not necessary and not researched well). This forum is where I get a lot of my feedback and base a lot of my decisions on.
Hope this helps.
Missa

ehtansky21 · Aug 27, 2008

Hello Plumperfect,
How old is your son???? Are you breastfeeding at all or is the goats milk where he will be getting his primary nutrients???? You can really add nutrients into the foods if he is eating some solids. You can also add stuff into the goats milk....coconut milk and flax oil/seed is really good with the fat content and health benefits...
AS for throat cultures. I always ask for a copy of the results and put it in my notebook for each of my kids. As I understand, Staph is almost good to have, because it kind of scares off the rest of the really bad bacterias, such as pseudomonas. My oldest always cultures staph and the only time they really treat it is when he is actually sick.
I do get really frustrated with the CF clinic and I have to check myself and make sure I am not just in denial of where the kids are at in there health (I am resistant to doing treatment that is not necessary and not researched well). This forum is where I get a lot of my feedback and base a lot of my decisions on.
Hope this helps.
Missa

ehtansky21 · Aug 27, 2008

Hello Plumperfect,
How old is your son???? Are you breastfeeding at all or is the goats milk where he will be getting his primary nutrients???? You can really add nutrients into the foods if he is eating some solids. You can also add stuff into the goats milk....coconut milk and flax oil/seed is really good with the fat content and health benefits...
AS for throat cultures. I always ask for a copy of the results and put it in my notebook for each of my kids. As I understand, Staph is almost good to have, because it kind of scares off the rest of the really bad bacterias, such as pseudomonas. My oldest always cultures staph and the only time they really treat it is when he is actually sick.
I do get really frustrated with the CF clinic and I have to check myself and make sure I am not just in denial of where the kids are at in there health (I am resistant to doing treatment that is not necessary and not researched well). This forum is where I get a lot of my feedback and base a lot of my decisions on.
Hope this helps.
Missa

ehtansky21 · Aug 27, 2008

Hello Plumperfect,
How old is your son???? Are you breastfeeding at all or is the goats milk where he will be getting his primary nutrients???? You can really add nutrients into the foods if he is eating some solids. You can also add stuff into the goats milk....coconut milk and flax oil/seed is really good with the fat content and health benefits...
AS for throat cultures. I always ask for a copy of the results and put it in my notebook for each of my kids. As I understand, Staph is almost good to have, because it kind of scares off the rest of the really bad bacterias, such as pseudomonas. My oldest always cultures staph and the only time they really treat it is when he is actually sick.
I do get really frustrated with the CF clinic and I have to check myself and make sure I am not just in denial of where the kids are at in there health (I am resistant to doing treatment that is not necessary and not researched well). This forum is where I get a lot of my feedback and base a lot of my decisions on.
Hope this helps.
Missa

ehtansky21 · Aug 27, 2008

Hello Plumperfect,
 How old is your son???? Are you breastfeeding at all or is the goats milk where he will be getting his primary nutrients???? You can really add nutrients into the foods if he is eating some solids. You can also add stuff into the goats milk....coconut milk and flax oil/seed is really good with the fat content and health benefits...
 AS for throat cultures. I always ask for a copy of the results and put it in my notebook for each of my kids. As I understand, Staph is almost good to have, because it kind of scares off the rest of the really bad bacterias, such as pseudomonas. My oldest always cultures staph and the only time they really treat it is when he is actually sick.
 I do get really frustrated with the CF clinic and I have to check myself and make sure I am not just in denial of where the kids are at in there health (I am resistant to doing treatment that is not necessary and not researched well). This forum is where I get a lot of my feedback and base a lot of my decisions on.
 Hope this helps.
 Missa

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