What have we learnt that we were not told???

[Louieh1]

We have had alot of newly diagnosed cf children in our county lately and I was asked if I had any tips or info for a new parent regarding CF on what to do and do not(Stuff that the doctors might not have told us in the early days)Just wondering if you have any tips I could pass on that you found invaluable?/Thank you.

 

[Louieh1]

We have had alot of newly diagnosed cf children in our county lately and I was asked if I had any tips or info for a new parent regarding CF on what to do and do not(Stuff that the doctors might not have told us in the early days)Just wondering if you have any tips I could pass on that you found invaluable?/Thank you.

 

[Louieh1]

We have had alot of newly diagnosed cf children in our county lately and I was asked if I had any tips or info for a new parent regarding CF on what to do and do not(Stuff that the doctors might not have told us in the early days)Just wondering if you have any tips I could pass on that you found invaluable?/Thank you.

 

[Louieh1]

We have had alot of newly diagnosed cf children in our county lately and I was asked if I had any tips or info for a new parent regarding CF on what to do and do not(Stuff that the doctors might not have told us in the early days)Just wondering if you have any tips I could pass on that you found invaluable?/Thank you.

 

[Louieh1]

We have had alot of newly diagnosed cf children in our county lately and I was asked if I had any tips or info for a new parent regarding CF on what to do and do not(Stuff that the doctors might not have told us in the early days)Just wondering if you have any tips I could pass on that you found invaluable?/Thank you.

 

[pjspiegle]

One thing that we were not told in the beginning was the importance of avoiding buffets due to high risk of burkholderia until after Nathan had a culture of it once. Thank GOD it turned out it was a contaimenated culture and he did not actually have it but it would have been nice to know we should not let him eat at buffets before we had the scare.

Another is the indoor pools and hot tubs. Where this is risking psedumonas and most will grow it sooner or later, I think we should have been told so that we could make our own decisions. I don't want to put Nathan in a bubble, but I would like this kind of information so that we can make an educated decision for ourselves and decide if it is worth the risk or not. Nathan does go swimming, we are just careful of where and make sure they are checking chemicals and cleaning properly.

Can't protect them from everything, but it would be nice to know about the big stuff before hand so that we can decide what is best. I mean really, is eating at verses not eating at a buffet really putting him in a bubble? We personally think that there are enough other eating options that avoiding buffets just is not a big deal for us, besides most are pretty nasty anyways.

Just my opinion but I would rather make an informed choice and have the facts to base that choice on before he grows some major bug of some sort.

Oh yeah, My best advice to all CF parents especially is to FOLLOW YOUR INSTINCTS UNTIL PROVEN ABSOLUTELY WRONG, don't give up until you get an answer that satisfys you and you feel good with.

 

[pjspiegle]

One thing that we were not told in the beginning was the importance of avoiding buffets due to high risk of burkholderia until after Nathan had a culture of it once. Thank GOD it turned out it was a contaimenated culture and he did not actually have it but it would have been nice to know we should not let him eat at buffets before we had the scare.

Another is the indoor pools and hot tubs. Where this is risking psedumonas and most will grow it sooner or later, I think we should have been told so that we could make our own decisions. I don't want to put Nathan in a bubble, but I would like this kind of information so that we can make an educated decision for ourselves and decide if it is worth the risk or not. Nathan does go swimming, we are just careful of where and make sure they are checking chemicals and cleaning properly.

Can't protect them from everything, but it would be nice to know about the big stuff before hand so that we can decide what is best. I mean really, is eating at verses not eating at a buffet really putting him in a bubble? We personally think that there are enough other eating options that avoiding buffets just is not a big deal for us, besides most are pretty nasty anyways.

Just my opinion but I would rather make an informed choice and have the facts to base that choice on before he grows some major bug of some sort.

Oh yeah, My best advice to all CF parents especially is to FOLLOW YOUR INSTINCTS UNTIL PROVEN ABSOLUTELY WRONG, don't give up until you get an answer that satisfys you and you feel good with.

 

[pjspiegle]

One thing that we were not told in the beginning was the importance of avoiding buffets due to high risk of burkholderia until after Nathan had a culture of it once. Thank GOD it turned out it was a contaimenated culture and he did not actually have it but it would have been nice to know we should not let him eat at buffets before we had the scare.

Another is the indoor pools and hot tubs. Where this is risking psedumonas and most will grow it sooner or later, I think we should have been told so that we could make our own decisions. I don't want to put Nathan in a bubble, but I would like this kind of information so that we can make an educated decision for ourselves and decide if it is worth the risk or not. Nathan does go swimming, we are just careful of where and make sure they are checking chemicals and cleaning properly.

Can't protect them from everything, but it would be nice to know about the big stuff before hand so that we can decide what is best. I mean really, is eating at verses not eating at a buffet really putting him in a bubble? We personally think that there are enough other eating options that avoiding buffets just is not a big deal for us, besides most are pretty nasty anyways.

Just my opinion but I would rather make an informed choice and have the facts to base that choice on before he grows some major bug of some sort.

Oh yeah, My best advice to all CF parents especially is to FOLLOW YOUR INSTINCTS UNTIL PROVEN ABSOLUTELY WRONG, don't give up until you get an answer that satisfys you and you feel good with.

 

[pjspiegle]

One thing that we were not told in the beginning was the importance of avoiding buffets due to high risk of burkholderia until after Nathan had a culture of it once. Thank GOD it turned out it was a contaimenated culture and he did not actually have it but it would have been nice to know we should not let him eat at buffets before we had the scare.

Another is the indoor pools and hot tubs. Where this is risking psedumonas and most will grow it sooner or later, I think we should have been told so that we could make our own decisions. I don't want to put Nathan in a bubble, but I would like this kind of information so that we can make an educated decision for ourselves and decide if it is worth the risk or not. Nathan does go swimming, we are just careful of where and make sure they are checking chemicals and cleaning properly.

Can't protect them from everything, but it would be nice to know about the big stuff before hand so that we can decide what is best. I mean really, is eating at verses not eating at a buffet really putting him in a bubble? We personally think that there are enough other eating options that avoiding buffets just is not a big deal for us, besides most are pretty nasty anyways.

Just my opinion but I would rather make an informed choice and have the facts to base that choice on before he grows some major bug of some sort.

Oh yeah, My best advice to all CF parents especially is to FOLLOW YOUR INSTINCTS UNTIL PROVEN ABSOLUTELY WRONG, don't give up until you get an answer that satisfys you and you feel good with.

 

[pjspiegle]

One thing that we were not told in the beginning was the importance of avoiding buffets due to high risk of burkholderia until after Nathan had a culture of it once. Thank GOD it turned out it was a contaimenated culture and he did not actually have it but it would have been nice to know we should not let him eat at buffets before we had the scare.

Another is the indoor pools and hot tubs. Where this is risking psedumonas and most will grow it sooner or later, I think we should have been told so that we could make our own decisions. I don't want to put Nathan in a bubble, but I would like this kind of information so that we can make an educated decision for ourselves and decide if it is worth the risk or not. Nathan does go swimming, we are just careful of where and make sure they are checking chemicals and cleaning properly.

Can't protect them from everything, but it would be nice to know about the big stuff before hand so that we can decide what is best. I mean really, is eating at verses not eating at a buffet really putting him in a bubble? We personally think that there are enough other eating options that avoiding buffets just is not a big deal for us, besides most are pretty nasty anyways.

Just my opinion but I would rather make an informed choice and have the facts to base that choice on before he grows some major bug of some sort.

Oh yeah, My best advice to all CF parents especially is to FOLLOW YOUR INSTINCTS UNTIL PROVEN ABSOLUTELY WRONG, don't give up until you get an answer that satisfys you and you feel good with.

 

[Sakem]

Buy a trampoline!!!!!! Buy a trampoline!!!!! Buy a trampoline!!!!
and put them on at a VERY early age....heck even if they are just crawling, u can get in them and lay them down on their stomach or back and bouce them up and down.

I believe the trampoline had been part of the puzzle to my son's good health. It's amazing how much stronger the lungs can be from doing your own work, plus it makes them sleep good at night.

 

[Sakem]

Buy a trampoline!!!!!! Buy a trampoline!!!!! Buy a trampoline!!!!
and put them on at a VERY early age....heck even if they are just crawling, u can get in them and lay them down on their stomach or back and bouce them up and down.

I believe the trampoline had been part of the puzzle to my son's good health. It's amazing how much stronger the lungs can be from doing your own work, plus it makes them sleep good at night.

 

[Sakem]

Buy a trampoline!!!!!! Buy a trampoline!!!!! Buy a trampoline!!!!
and put them on at a VERY early age....heck even if they are just crawling, u can get in them and lay them down on their stomach or back and bouce them up and down.

I believe the trampoline had been part of the puzzle to my son's good health. It's amazing how much stronger the lungs can be from doing your own work, plus it makes them sleep good at night.

 

[Sakem]

Buy a trampoline!!!!!! Buy a trampoline!!!!! Buy a trampoline!!!!
and put them on at a VERY early age....heck even if they are just crawling, u can get in them and lay them down on their stomach or back and bouce them up and down.

I believe the trampoline had been part of the puzzle to my son's good health. It's amazing how much stronger the lungs can be from doing your own work, plus it makes them sleep good at night.

 

[Sakem]

Buy a trampoline!!!!!! Buy a trampoline!!!!! Buy a trampoline!!!!
and put them on at a VERY early age....heck even if they are just crawling, u can get in them and lay them down on their stomach or back and bouce them up and down.

I believe the trampoline had been part of the puzzle to my son's good health. It's amazing how much stronger the lungs can be from doing your own work, plus it makes them sleep good at night.

 

[Ratatosk]

Basically because of cross contamination concerns and the bugs they may carry -- pseudomonas, cepacia, mrsa... cfers should maintain a distance, not be in close contact with each other. Lot easier when your child is older, but with youngsters, especially toddlers who always have to touch things, do the hand to nose/mouth contact... I believe the CFF has pamphlets on germ prevention, CF in the classroom -- one of those mentions not having cfers who go to the same school in the same classroom.

Our local cf clinic has a community waiting room, patients go from room to room to see the medical staff, and not the other way around, there are toys in the waiting room. They're not concerned with the cross contamination issue because none of their patients have ever cultured cepacia at their clinic.

Our clinic STILL doesn't encourage doing CPT or the Vest until their are lung issues. I just spoke to a parent of another CFer, who like us goes to a different clinic in the City rather than the local one and she told me about a family in her town with two teenagers wcf who go to our local clinic and the eldest one JUST got a vest, the youngest doesn't do CPT because "her lungs aren't affected".

Oh and ditto on the hot tubs. After reading a recent article in the paper about the millions of particles of bacteria in those things, I don't believe I'll ever set foot in one of those again either. Hotter water has the potentional for growing more things than say the cooler water in swimming pools, plus when you're sitting in a hot tub, the steam is probably at face level, so you're breathing all that nastiness in. DS does go to swimming lessons, swims in pools and lakes.

 

[Ratatosk]

Basically because of cross contamination concerns and the bugs they may carry -- pseudomonas, cepacia, mrsa... cfers should maintain a distance, not be in close contact with each other. Lot easier when your child is older, but with youngsters, especially toddlers who always have to touch things, do the hand to nose/mouth contact... I believe the CFF has pamphlets on germ prevention, CF in the classroom -- one of those mentions not having cfers who go to the same school in the same classroom.

Our local cf clinic has a community waiting room, patients go from room to room to see the medical staff, and not the other way around, there are toys in the waiting room. They're not concerned with the cross contamination issue because none of their patients have ever cultured cepacia at their clinic.

Our clinic STILL doesn't encourage doing CPT or the Vest until their are lung issues. I just spoke to a parent of another CFer, who like us goes to a different clinic in the City rather than the local one and she told me about a family in her town with two teenagers wcf who go to our local clinic and the eldest one JUST got a vest, the youngest doesn't do CPT because "her lungs aren't affected".

Oh and ditto on the hot tubs. After reading a recent article in the paper about the millions of particles of bacteria in those things, I don't believe I'll ever set foot in one of those again either. Hotter water has the potentional for growing more things than say the cooler water in swimming pools, plus when you're sitting in a hot tub, the steam is probably at face level, so you're breathing all that nastiness in. DS does go to swimming lessons, swims in pools and lakes.

 

[Ratatosk]

Basically because of cross contamination concerns and the bugs they may carry -- pseudomonas, cepacia, mrsa... cfers should maintain a distance, not be in close contact with each other. Lot easier when your child is older, but with youngsters, especially toddlers who always have to touch things, do the hand to nose/mouth contact... I believe the CFF has pamphlets on germ prevention, CF in the classroom -- one of those mentions not having cfers who go to the same school in the same classroom.

Our local cf clinic has a community waiting room, patients go from room to room to see the medical staff, and not the other way around, there are toys in the waiting room. They're not concerned with the cross contamination issue because none of their patients have ever cultured cepacia at their clinic.

Our clinic STILL doesn't encourage doing CPT or the Vest until their are lung issues. I just spoke to a parent of another CFer, who like us goes to a different clinic in the City rather than the local one and she told me about a family in her town with two teenagers wcf who go to our local clinic and the eldest one JUST got a vest, the youngest doesn't do CPT because "her lungs aren't affected".

Oh and ditto on the hot tubs. After reading a recent article in the paper about the millions of particles of bacteria in those things, I don't believe I'll ever set foot in one of those again either. Hotter water has the potentional for growing more things than say the cooler water in swimming pools, plus when you're sitting in a hot tub, the steam is probably at face level, so you're breathing all that nastiness in. DS does go to swimming lessons, swims in pools and lakes.

 

[Ratatosk]

Basically because of cross contamination concerns and the bugs they may carry -- pseudomonas, cepacia, mrsa... cfers should maintain a distance, not be in close contact with each other. Lot easier when your child is older, but with youngsters, especially toddlers who always have to touch things, do the hand to nose/mouth contact... I believe the CFF has pamphlets on germ prevention, CF in the classroom -- one of those mentions not having cfers who go to the same school in the same classroom.

Our local cf clinic has a community waiting room, patients go from room to room to see the medical staff, and not the other way around, there are toys in the waiting room. They're not concerned with the cross contamination issue because none of their patients have ever cultured cepacia at their clinic.

Our clinic STILL doesn't encourage doing CPT or the Vest until their are lung issues. I just spoke to a parent of another CFer, who like us goes to a different clinic in the City rather than the local one and she told me about a family in her town with two teenagers wcf who go to our local clinic and the eldest one JUST got a vest, the youngest doesn't do CPT because "her lungs aren't affected".

Oh and ditto on the hot tubs. After reading a recent article in the paper about the millions of particles of bacteria in those things, I don't believe I'll ever set foot in one of those again either. Hotter water has the potentional for growing more things than say the cooler water in swimming pools, plus when you're sitting in a hot tub, the steam is probably at face level, so you're breathing all that nastiness in. DS does go to swimming lessons, swims in pools and lakes.

 

[Ratatosk]

Basically because of cross contamination concerns and the bugs they may carry -- pseudomonas, cepacia, mrsa... cfers should maintain a distance, not be in close contact with each other. Lot easier when your child is older, but with youngsters, especially toddlers who always have to touch things, do the hand to nose/mouth contact... I believe the CFF has pamphlets on germ prevention, CF in the classroom -- one of those mentions not having cfers who go to the same school in the same classroom.

Our local cf clinic has a community waiting room, patients go from room to room to see the medical staff, and not the other way around, there are toys in the waiting room. They're not concerned with the cross contamination issue because none of their patients have ever cultured cepacia at their clinic.

Our clinic STILL doesn't encourage doing CPT or the Vest until their are lung issues. I just spoke to a parent of another CFer, who like us goes to a different clinic in the City rather than the local one and she told me about a family in her town with two teenagers wcf who go to our local clinic and the eldest one JUST got a vest, the youngest doesn't do CPT because "her lungs aren't affected".

Oh and ditto on the hot tubs. After reading a recent article in the paper about the millions of particles of bacteria in those things, I don't believe I'll ever set foot in one of those again either. Hotter water has the potentional for growing more things than say the cooler water in swimming pools, plus when you're sitting in a hot tub, the steam is probably at face level, so you're breathing all that nastiness in. DS does go to swimming lessons, swims in pools and lakes.