PSEUDO TWICE...My daughter

M

MCGrad2006

Guest
Pseudo is almost invetiable in us CFer's. I have had it for as long as I can remember as well. I was always able to do the things my peers were doing as well. I played field hockey in high school and was able to the practices and games well. If you are reliable in doing the meds, she will have a better chance at a 'normal' life. Its a part of CF and we all worry and do extra to keep ourselves healthy. Like Amy said, you cant keep her in a bubble, kids will get sick. If she gets sick, be more proactive and call your doc more often. They may be able to medicate her over the phone too...I usually just call my doc and say I'm sick and they call in the meds for me.

What AND saiid too, is good advice washing things down. If the doc sees you doing all of that, maybe they will take a hint. Sorry to hear of your problems, but try not to over worry yourself. And dont worry about burdening us with your CF issues. Thats what we are here for! <img src="i/expressions/heart.gif" border="0">
 
M

MCGrad2006

Guest
Pseudo is almost invetiable in us CFer's. I have had it for as long as I can remember as well. I was always able to do the things my peers were doing as well. I played field hockey in high school and was able to the practices and games well. If you are reliable in doing the meds, she will have a better chance at a 'normal' life. Its a part of CF and we all worry and do extra to keep ourselves healthy. Like Amy said, you cant keep her in a bubble, kids will get sick. If she gets sick, be more proactive and call your doc more often. They may be able to medicate her over the phone too...I usually just call my doc and say I'm sick and they call in the meds for me.

What AND saiid too, is good advice washing things down. If the doc sees you doing all of that, maybe they will take a hint. Sorry to hear of your problems, but try not to over worry yourself. And dont worry about burdening us with your CF issues. Thats what we are here for! <img src="i/expressions/heart.gif" border="0">
 
M

MCGrad2006

Guest
Pseudo is almost invetiable in us CFer's. I have had it for as long as I can remember as well. I was always able to do the things my peers were doing as well. I played field hockey in high school and was able to the practices and games well. If you are reliable in doing the meds, she will have a better chance at a 'normal' life. Its a part of CF and we all worry and do extra to keep ourselves healthy. Like Amy said, you cant keep her in a bubble, kids will get sick. If she gets sick, be more proactive and call your doc more often. They may be able to medicate her over the phone too...I usually just call my doc and say I'm sick and they call in the meds for me.

What AND saiid too, is good advice washing things down. If the doc sees you doing all of that, maybe they will take a hint. Sorry to hear of your problems, but try not to over worry yourself. And dont worry about burdening us with your CF issues. Thats what we are here for! <img src="i/expressions/heart.gif" border="0">
 
M

MCGrad2006

Guest
Pseudo is almost invetiable in us CFer's. I have had it for as long as I can remember as well. I was always able to do the things my peers were doing as well. I played field hockey in high school and was able to the practices and games well. If you are reliable in doing the meds, she will have a better chance at a 'normal' life. Its a part of CF and we all worry and do extra to keep ourselves healthy. Like Amy said, you cant keep her in a bubble, kids will get sick. If she gets sick, be more proactive and call your doc more often. They may be able to medicate her over the phone too...I usually just call my doc and say I'm sick and they call in the meds for me.

What AND saiid too, is good advice washing things down. If the doc sees you doing all of that, maybe they will take a hint. Sorry to hear of your problems, but try not to over worry yourself. And dont worry about burdening us with your CF issues. Thats what we are here for! <img src="i/expressions/heart.gif" border="0">
 
M

MCGrad2006

Guest
Pseudo is almost invetiable in us CFer's. I have had it for as long as I can remember as well. I was always able to do the things my peers were doing as well. I played field hockey in high school and was able to the practices and games well. If you are reliable in doing the meds, she will have a better chance at a 'normal' life. Its a part of CF and we all worry and do extra to keep ourselves healthy. Like Amy said, you cant keep her in a bubble, kids will get sick. If she gets sick, be more proactive and call your doc more often. They may be able to medicate her over the phone too...I usually just call my doc and say I'm sick and they call in the meds for me.

What AND saiid too, is good advice washing things down. If the doc sees you doing all of that, maybe they will take a hint. Sorry to hear of your problems, but try not to over worry yourself. And dont worry about burdening us with your CF issues. Thats what we are here for! <img src="i/expressions/heart.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I mentioned this in the family section, we have since refused to go to our local CF clinic and see the head of the cf program at the regular peds clinic. We don't have a very good rapport with any of the local staff. Think from day one we were labeled troublemakers when we complained about the crowded waiting room, staff not washing hands. Viewing the doctor's notes after our last well child visit, there was a comment about us not going to the coordinated clinic "as parents have concerns with germs". We tried discussing our concerns and we got comments such as "well you send your child to day care, preschool" or "we've never had a patient with cepacia at our clinic" We were also told that the don't have enough space to provide individual exam rooms for each patient and have patients wait in the waiting room to see the various health care professionals and it doesn't sound as if that will change. We tried working with them. Meanwhile we see the local cf doctor at least twice a year, have a cf culture done each time and labs done once a year at the main clinic.

I imagine at some point they may need to change the way they do things. I spoke with a parent of a recently diagnosed baby and they deal with the same issues. So at least we're not the only clinic outcasts. She was also told by her primary clinic in the City not to listen to anything the local doctors tell her -- which is kinda bizarre because our local clinic just became accreditted and are considered a satellite clinic of the main one in the ciy.

I'd be more stressed about the whole situation, except our primary physician is in the city 4 hours away and we see him at least twice a year.
 
R

Ratatosk

Administrator
Staff member
I mentioned this in the family section, we have since refused to go to our local CF clinic and see the head of the cf program at the regular peds clinic. We don't have a very good rapport with any of the local staff. Think from day one we were labeled troublemakers when we complained about the crowded waiting room, staff not washing hands. Viewing the doctor's notes after our last well child visit, there was a comment about us not going to the coordinated clinic "as parents have concerns with germs". We tried discussing our concerns and we got comments such as "well you send your child to day care, preschool" or "we've never had a patient with cepacia at our clinic" We were also told that the don't have enough space to provide individual exam rooms for each patient and have patients wait in the waiting room to see the various health care professionals and it doesn't sound as if that will change. We tried working with them. Meanwhile we see the local cf doctor at least twice a year, have a cf culture done each time and labs done once a year at the main clinic.

I imagine at some point they may need to change the way they do things. I spoke with a parent of a recently diagnosed baby and they deal with the same issues. So at least we're not the only clinic outcasts. She was also told by her primary clinic in the City not to listen to anything the local doctors tell her -- which is kinda bizarre because our local clinic just became accreditted and are considered a satellite clinic of the main one in the ciy.

I'd be more stressed about the whole situation, except our primary physician is in the city 4 hours away and we see him at least twice a year.
 
R

Ratatosk

Administrator
Staff member
I mentioned this in the family section, we have since refused to go to our local CF clinic and see the head of the cf program at the regular peds clinic. We don't have a very good rapport with any of the local staff. Think from day one we were labeled troublemakers when we complained about the crowded waiting room, staff not washing hands. Viewing the doctor's notes after our last well child visit, there was a comment about us not going to the coordinated clinic "as parents have concerns with germs". We tried discussing our concerns and we got comments such as "well you send your child to day care, preschool" or "we've never had a patient with cepacia at our clinic" We were also told that the don't have enough space to provide individual exam rooms for each patient and have patients wait in the waiting room to see the various health care professionals and it doesn't sound as if that will change. We tried working with them. Meanwhile we see the local cf doctor at least twice a year, have a cf culture done each time and labs done once a year at the main clinic.

I imagine at some point they may need to change the way they do things. I spoke with a parent of a recently diagnosed baby and they deal with the same issues. So at least we're not the only clinic outcasts. She was also told by her primary clinic in the City not to listen to anything the local doctors tell her -- which is kinda bizarre because our local clinic just became accreditted and are considered a satellite clinic of the main one in the ciy.

I'd be more stressed about the whole situation, except our primary physician is in the city 4 hours away and we see him at least twice a year.
 
R

Ratatosk

Administrator
Staff member
I mentioned this in the family section, we have since refused to go to our local CF clinic and see the head of the cf program at the regular peds clinic. We don't have a very good rapport with any of the local staff. Think from day one we were labeled troublemakers when we complained about the crowded waiting room, staff not washing hands. Viewing the doctor's notes after our last well child visit, there was a comment about us not going to the coordinated clinic "as parents have concerns with germs". We tried discussing our concerns and we got comments such as "well you send your child to day care, preschool" or "we've never had a patient with cepacia at our clinic" We were also told that the don't have enough space to provide individual exam rooms for each patient and have patients wait in the waiting room to see the various health care professionals and it doesn't sound as if that will change. We tried working with them. Meanwhile we see the local cf doctor at least twice a year, have a cf culture done each time and labs done once a year at the main clinic.

I imagine at some point they may need to change the way they do things. I spoke with a parent of a recently diagnosed baby and they deal with the same issues. So at least we're not the only clinic outcasts. She was also told by her primary clinic in the City not to listen to anything the local doctors tell her -- which is kinda bizarre because our local clinic just became accreditted and are considered a satellite clinic of the main one in the ciy.

I'd be more stressed about the whole situation, except our primary physician is in the city 4 hours away and we see him at least twice a year.
 
R

Ratatosk

Administrator
Staff member
I mentioned this in the family section, we have since refused to go to our local CF clinic and see the head of the cf program at the regular peds clinic. We don't have a very good rapport with any of the local staff. Think from day one we were labeled troublemakers when we complained about the crowded waiting room, staff not washing hands. Viewing the doctor's notes after our last well child visit, there was a comment about us not going to the coordinated clinic "as parents have concerns with germs". We tried discussing our concerns and we got comments such as "well you send your child to day care, preschool" or "we've never had a patient with cepacia at our clinic" We were also told that the don't have enough space to provide individual exam rooms for each patient and have patients wait in the waiting room to see the various health care professionals and it doesn't sound as if that will change. We tried working with them. Meanwhile we see the local cf doctor at least twice a year, have a cf culture done each time and labs done once a year at the main clinic.

I imagine at some point they may need to change the way they do things. I spoke with a parent of a recently diagnosed baby and they deal with the same issues. So at least we're not the only clinic outcasts. She was also told by her primary clinic in the City not to listen to anything the local doctors tell her -- which is kinda bizarre because our local clinic just became accreditted and are considered a satellite clinic of the main one in the ciy.

I'd be more stressed about the whole situation, except our primary physician is in the city 4 hours away and we see him at least twice a year.
 
B

bagged2drag

Active member
as far as refusing to go to the hospital.. don't do it. You could take your chances and get lucky, but in many cases you won't be able to get prescriptions without follow up care. Furthermore, if there is a change, especially one which is not symptomatically noticed, you will then be forced to be reactive to it instead of being proactive. This could be potentially devastating. I know this first hand. I avoided the cf clinic for quite a number of years, and before that, my parents weren't very compliant. I always had a bad cough and "bronchitis" and I would always go to the walk in clinic to get treated. Well, going on oral abx almost once a month for a few years made me resistant to most medications. Also, after having surgery, my pfts dropped and I was never able to get them back up. A lot of this may have been prevented if i had been proactive and on top of my care. Instead I was bullheaded because I hated the clinic and the costs involved. I was lucky at least and eventually regained susceptibility to oral abx.
 
B

bagged2drag

Active member
as far as refusing to go to the hospital.. don't do it. You could take your chances and get lucky, but in many cases you won't be able to get prescriptions without follow up care. Furthermore, if there is a change, especially one which is not symptomatically noticed, you will then be forced to be reactive to it instead of being proactive. This could be potentially devastating. I know this first hand. I avoided the cf clinic for quite a number of years, and before that, my parents weren't very compliant. I always had a bad cough and "bronchitis" and I would always go to the walk in clinic to get treated. Well, going on oral abx almost once a month for a few years made me resistant to most medications. Also, after having surgery, my pfts dropped and I was never able to get them back up. A lot of this may have been prevented if i had been proactive and on top of my care. Instead I was bullheaded because I hated the clinic and the costs involved. I was lucky at least and eventually regained susceptibility to oral abx.
 
B

bagged2drag

Active member
as far as refusing to go to the hospital.. don't do it. You could take your chances and get lucky, but in many cases you won't be able to get prescriptions without follow up care. Furthermore, if there is a change, especially one which is not symptomatically noticed, you will then be forced to be reactive to it instead of being proactive. This could be potentially devastating. I know this first hand. I avoided the cf clinic for quite a number of years, and before that, my parents weren't very compliant. I always had a bad cough and "bronchitis" and I would always go to the walk in clinic to get treated. Well, going on oral abx almost once a month for a few years made me resistant to most medications. Also, after having surgery, my pfts dropped and I was never able to get them back up. A lot of this may have been prevented if i had been proactive and on top of my care. Instead I was bullheaded because I hated the clinic and the costs involved. I was lucky at least and eventually regained susceptibility to oral abx.
 
B

bagged2drag

Active member
as far as refusing to go to the hospital.. don't do it. You could take your chances and get lucky, but in many cases you won't be able to get prescriptions without follow up care. Furthermore, if there is a change, especially one which is not symptomatically noticed, you will then be forced to be reactive to it instead of being proactive. This could be potentially devastating. I know this first hand. I avoided the cf clinic for quite a number of years, and before that, my parents weren't very compliant. I always had a bad cough and "bronchitis" and I would always go to the walk in clinic to get treated. Well, going on oral abx almost once a month for a few years made me resistant to most medications. Also, after having surgery, my pfts dropped and I was never able to get them back up. A lot of this may have been prevented if i had been proactive and on top of my care. Instead I was bullheaded because I hated the clinic and the costs involved. I was lucky at least and eventually regained susceptibility to oral abx.
 
B

bagged2drag

Active member
as far as refusing to go to the hospital.. don't do it. You could take your chances and get lucky, but in many cases you won't be able to get prescriptions without follow up care. Furthermore, if there is a change, especially one which is not symptomatically noticed, you will then be forced to be reactive to it instead of being proactive. This could be potentially devastating. I know this first hand. I avoided the cf clinic for quite a number of years, and before that, my parents weren't very compliant. I always had a bad cough and "bronchitis" and I would always go to the walk in clinic to get treated. Well, going on oral abx almost once a month for a few years made me resistant to most medications. Also, after having surgery, my pfts dropped and I was never able to get them back up. A lot of this may have been prevented if i had been proactive and on top of my care. Instead I was bullheaded because I hated the clinic and the costs involved. I was lucky at least and eventually regained susceptibility to oral abx.
 
N

NoExcuses

New member
i haven't read what others have said but not going to clinic <b> is not the answer </b>. PA happens to about 80% of all CF patients. you are right, post-poning colonization is the best way to go. but skipping clinic is not going to help the situation.

wash hands, wash hands, wash hands. remove all clothes (including shoes) when you return home from clinic before you enter the house. shower when you get back.

nothing will get into your little one's lungs unless it gets on her hands first. PA isn't airborn. So if she picks up PA it's from equipment at the clinic (pulmonary function machines, etc) or by touching things with her hands and sticking them in her nose/mouth.

so believe it or not, infection control is extremely controllable by you, even if the clinic won't cooperate.

it's overwhelming, i know. and you just want to do what's best for her. this is why this forum can be so useful. i would really recommend against skipping clinic, though. and check out other clinics - often times egalitarian societies such as those in Europe like to claim that all care is the same, but in reality, there are differences. can't hurt to check things out at another clinic.
 
N

NoExcuses

New member
i haven't read what others have said but not going to clinic <b> is not the answer </b>. PA happens to about 80% of all CF patients. you are right, post-poning colonization is the best way to go. but skipping clinic is not going to help the situation.

wash hands, wash hands, wash hands. remove all clothes (including shoes) when you return home from clinic before you enter the house. shower when you get back.

nothing will get into your little one's lungs unless it gets on her hands first. PA isn't airborn. So if she picks up PA it's from equipment at the clinic (pulmonary function machines, etc) or by touching things with her hands and sticking them in her nose/mouth.

so believe it or not, infection control is extremely controllable by you, even if the clinic won't cooperate.

it's overwhelming, i know. and you just want to do what's best for her. this is why this forum can be so useful. i would really recommend against skipping clinic, though. and check out other clinics - often times egalitarian societies such as those in Europe like to claim that all care is the same, but in reality, there are differences. can't hurt to check things out at another clinic.
 
N

NoExcuses

New member
i haven't read what others have said but not going to clinic <b> is not the answer </b>. PA happens to about 80% of all CF patients. you are right, post-poning colonization is the best way to go. but skipping clinic is not going to help the situation.

wash hands, wash hands, wash hands. remove all clothes (including shoes) when you return home from clinic before you enter the house. shower when you get back.

nothing will get into your little one's lungs unless it gets on her hands first. PA isn't airborn. So if she picks up PA it's from equipment at the clinic (pulmonary function machines, etc) or by touching things with her hands and sticking them in her nose/mouth.

so believe it or not, infection control is extremely controllable by you, even if the clinic won't cooperate.

it's overwhelming, i know. and you just want to do what's best for her. this is why this forum can be so useful. i would really recommend against skipping clinic, though. and check out other clinics - often times egalitarian societies such as those in Europe like to claim that all care is the same, but in reality, there are differences. can't hurt to check things out at another clinic.
 
N

NoExcuses

New member
i haven't read what others have said but not going to clinic <b> is not the answer </b>. PA happens to about 80% of all CF patients. you are right, post-poning colonization is the best way to go. but skipping clinic is not going to help the situation.

wash hands, wash hands, wash hands. remove all clothes (including shoes) when you return home from clinic before you enter the house. shower when you get back.

nothing will get into your little one's lungs unless it gets on her hands first. PA isn't airborn. So if she picks up PA it's from equipment at the clinic (pulmonary function machines, etc) or by touching things with her hands and sticking them in her nose/mouth.

so believe it or not, infection control is extremely controllable by you, even if the clinic won't cooperate.

it's overwhelming, i know. and you just want to do what's best for her. this is why this forum can be so useful. i would really recommend against skipping clinic, though. and check out other clinics - often times egalitarian societies such as those in Europe like to claim that all care is the same, but in reality, there are differences. can't hurt to check things out at another clinic.
 
N

NoExcuses

New member
i haven't read what others have said but not going to clinic <b> is not the answer </b>. PA happens to about 80% of all CF patients. you are right, post-poning colonization is the best way to go. but skipping clinic is not going to help the situation.

wash hands, wash hands, wash hands. remove all clothes (including shoes) when you return home from clinic before you enter the house. shower when you get back.

nothing will get into your little one's lungs unless it gets on her hands first. PA isn't airborn. So if she picks up PA it's from equipment at the clinic (pulmonary function machines, etc) or by touching things with her hands and sticking them in her nose/mouth.

so believe it or not, infection control is extremely controllable by you, even if the clinic won't cooperate.

it's overwhelming, i know. and you just want to do what's best for her. this is why this forum can be so useful. i would really recommend against skipping clinic, though. and check out other clinics - often times egalitarian societies such as those in Europe like to claim that all care is the same, but in reality, there are differences. can't hurt to check things out at another clinic.
 
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