Need Help Please...

M

Mommafirst

Guest
Hi Renee,

I read this post this morning and I've been thinking about it for awhile before I posted. I've really tried to think about what I would (will) do, as I have not been in this situation, but quite possibly will someday.

The thing I keep coming back to in my mind is that while the CF bugs are the enemy, these girls shouldn't be made to feel that they are each others' enemies. It would be horrible if your daughter had to high tail it out of the girls bathroom if the other girl was in there. They both wind up feeling like they are Typhoid Mary or something. KWIM.

I think what I would do was set up a meeting with the other girl and her mom. Since you spoke to the mom, this seems like a possibility. Just do it outside in a place where you feel comfortable that they don't have to be on top of one another sharing germs. Let the girls discuss what they would like to do in this situation. Enlist their help in the problem solving . . . it will go a long way in showing them that you understand that it is THEIR lives and their decisions. Sounds like your daughter is very knowledgable, so maybe she'd like to share her thoughts with the other girl.

Possibly they can develop a text messaging or e-mail based friendship. They might feel comfortable enough to share their schedules each year and coordinate which classrooms they are in etc. If one will be in the same classroom after the other, you might have your dd bring lysol wipes for her desk everyday or something. As usual, good handwashing and hygeine is going to be essential -- but it seems to me that this is doable, especially since your daughter is on the cusp of taking over her own care for her health (if you haven't started doing so already).

HUGS, I know this is scary, but I think with good guidance that this can be a great learning experience for your daughter and a good opportunity for her to connect with someone who understand the day-to-day life she lives.
 
M

Mommafirst

Guest
Hi Renee,

I read this post this morning and I've been thinking about it for awhile before I posted. I've really tried to think about what I would (will) do, as I have not been in this situation, but quite possibly will someday.

The thing I keep coming back to in my mind is that while the CF bugs are the enemy, these girls shouldn't be made to feel that they are each others' enemies. It would be horrible if your daughter had to high tail it out of the girls bathroom if the other girl was in there. They both wind up feeling like they are Typhoid Mary or something. KWIM.

I think what I would do was set up a meeting with the other girl and her mom. Since you spoke to the mom, this seems like a possibility. Just do it outside in a place where you feel comfortable that they don't have to be on top of one another sharing germs. Let the girls discuss what they would like to do in this situation. Enlist their help in the problem solving . . . it will go a long way in showing them that you understand that it is THEIR lives and their decisions. Sounds like your daughter is very knowledgable, so maybe she'd like to share her thoughts with the other girl.

Possibly they can develop a text messaging or e-mail based friendship. They might feel comfortable enough to share their schedules each year and coordinate which classrooms they are in etc. If one will be in the same classroom after the other, you might have your dd bring lysol wipes for her desk everyday or something. As usual, good handwashing and hygeine is going to be essential -- but it seems to me that this is doable, especially since your daughter is on the cusp of taking over her own care for her health (if you haven't started doing so already).

HUGS, I know this is scary, but I think with good guidance that this can be a great learning experience for your daughter and a good opportunity for her to connect with someone who understand the day-to-day life she lives.
 
M

Mommafirst

Guest
Hi Renee,

I read this post this morning and I've been thinking about it for awhile before I posted. I've really tried to think about what I would (will) do, as I have not been in this situation, but quite possibly will someday.

The thing I keep coming back to in my mind is that while the CF bugs are the enemy, these girls shouldn't be made to feel that they are each others' enemies. It would be horrible if your daughter had to high tail it out of the girls bathroom if the other girl was in there. They both wind up feeling like they are Typhoid Mary or something. KWIM.

I think what I would do was set up a meeting with the other girl and her mom. Since you spoke to the mom, this seems like a possibility. Just do it outside in a place where you feel comfortable that they don't have to be on top of one another sharing germs. Let the girls discuss what they would like to do in this situation. Enlist their help in the problem solving . . . it will go a long way in showing them that you understand that it is THEIR lives and their decisions. Sounds like your daughter is very knowledgable, so maybe she'd like to share her thoughts with the other girl.

Possibly they can develop a text messaging or e-mail based friendship. They might feel comfortable enough to share their schedules each year and coordinate which classrooms they are in etc. If one will be in the same classroom after the other, you might have your dd bring lysol wipes for her desk everyday or something. As usual, good handwashing and hygeine is going to be essential -- but it seems to me that this is doable, especially since your daughter is on the cusp of taking over her own care for her health (if you haven't started doing so already).

HUGS, I know this is scary, but I think with good guidance that this can be a great learning experience for your daughter and a good opportunity for her to connect with someone who understand the day-to-day life she lives.
 
M

Mommafirst

Guest
Hi Renee,

I read this post this morning and I've been thinking about it for awhile before I posted. I've really tried to think about what I would (will) do, as I have not been in this situation, but quite possibly will someday.

The thing I keep coming back to in my mind is that while the CF bugs are the enemy, these girls shouldn't be made to feel that they are each others' enemies. It would be horrible if your daughter had to high tail it out of the girls bathroom if the other girl was in there. They both wind up feeling like they are Typhoid Mary or something. KWIM.

I think what I would do was set up a meeting with the other girl and her mom. Since you spoke to the mom, this seems like a possibility. Just do it outside in a place where you feel comfortable that they don't have to be on top of one another sharing germs. Let the girls discuss what they would like to do in this situation. Enlist their help in the problem solving . . . it will go a long way in showing them that you understand that it is THEIR lives and their decisions. Sounds like your daughter is very knowledgable, so maybe she'd like to share her thoughts with the other girl.

Possibly they can develop a text messaging or e-mail based friendship. They might feel comfortable enough to share their schedules each year and coordinate which classrooms they are in etc. If one will be in the same classroom after the other, you might have your dd bring lysol wipes for her desk everyday or something. As usual, good handwashing and hygeine is going to be essential -- but it seems to me that this is doable, especially since your daughter is on the cusp of taking over her own care for her health (if you haven't started doing so already).

HUGS, I know this is scary, but I think with good guidance that this can be a great learning experience for your daughter and a good opportunity for her to connect with someone who understand the day-to-day life she lives.
 
M

Mommafirst

Guest
Hi Renee,
<br />
<br />I read this post this morning and I've been thinking about it for awhile before I posted. I've really tried to think about what I would (will) do, as I have not been in this situation, but quite possibly will someday.
<br />
<br />The thing I keep coming back to in my mind is that while the CF bugs are the enemy, these girls shouldn't be made to feel that they are each others' enemies. It would be horrible if your daughter had to high tail it out of the girls bathroom if the other girl was in there. They both wind up feeling like they are Typhoid Mary or something. KWIM.
<br />
<br />I think what I would do was set up a meeting with the other girl and her mom. Since you spoke to the mom, this seems like a possibility. Just do it outside in a place where you feel comfortable that they don't have to be on top of one another sharing germs. Let the girls discuss what they would like to do in this situation. Enlist their help in the problem solving . . . it will go a long way in showing them that you understand that it is THEIR lives and their decisions. Sounds like your daughter is very knowledgable, so maybe she'd like to share her thoughts with the other girl.
<br />
<br />Possibly they can develop a text messaging or e-mail based friendship. They might feel comfortable enough to share their schedules each year and coordinate which classrooms they are in etc. If one will be in the same classroom after the other, you might have your dd bring lysol wipes for her desk everyday or something. As usual, good handwashing and hygeine is going to be essential -- but it seems to me that this is doable, especially since your daughter is on the cusp of taking over her own care for her health (if you haven't started doing so already).
<br />
<br />HUGS, I know this is scary, but I think with good guidance that this can be a great learning experience for your daughter and a good opportunity for her to connect with someone who understand the day-to-day life she lives.
 
Z

zeeannie

Guest
In the past three schools our child has attended there has been one other CF'er. At the start, even before I knew about that, I made sure the nurse, and administration, knew what the protocol was. I asked that they make sure they were never in the same class. My daughter found out who the other kid was and made sure she stayed at least three feet away. They actually became friends! It was more like just saying hi from a distance and chatting and stuff. This was in FIRST grade! I'm sure your junior hi kid can handle the balance. I'm not sure knowing what they culture would make me any more comfortable, if I knew they had what we don't, it'd be frustrating because there's nothing I could do about it that I'm not already doing anyway.

Someone mentioned the nurses office. We've arranged for our daughter to come into the main office and if there is no one in the nurses office she can go in and get her meds. If there are any kids at all in there, she waits outside in the main office and the nurse will bring out the meds. That way she's not exposed to anyones germs, not just the other CF'er. I've had to remind the nurse to wash her hands before handling the meds, ugh...
 
Z

zeeannie

Guest
In the past three schools our child has attended there has been one other CF'er. At the start, even before I knew about that, I made sure the nurse, and administration, knew what the protocol was. I asked that they make sure they were never in the same class. My daughter found out who the other kid was and made sure she stayed at least three feet away. They actually became friends! It was more like just saying hi from a distance and chatting and stuff. This was in FIRST grade! I'm sure your junior hi kid can handle the balance. I'm not sure knowing what they culture would make me any more comfortable, if I knew they had what we don't, it'd be frustrating because there's nothing I could do about it that I'm not already doing anyway.

Someone mentioned the nurses office. We've arranged for our daughter to come into the main office and if there is no one in the nurses office she can go in and get her meds. If there are any kids at all in there, she waits outside in the main office and the nurse will bring out the meds. That way she's not exposed to anyones germs, not just the other CF'er. I've had to remind the nurse to wash her hands before handling the meds, ugh...
 
Z

zeeannie

Guest
In the past three schools our child has attended there has been one other CF'er. At the start, even before I knew about that, I made sure the nurse, and administration, knew what the protocol was. I asked that they make sure they were never in the same class. My daughter found out who the other kid was and made sure she stayed at least three feet away. They actually became friends! It was more like just saying hi from a distance and chatting and stuff. This was in FIRST grade! I'm sure your junior hi kid can handle the balance. I'm not sure knowing what they culture would make me any more comfortable, if I knew they had what we don't, it'd be frustrating because there's nothing I could do about it that I'm not already doing anyway.

Someone mentioned the nurses office. We've arranged for our daughter to come into the main office and if there is no one in the nurses office she can go in and get her meds. If there are any kids at all in there, she waits outside in the main office and the nurse will bring out the meds. That way she's not exposed to anyones germs, not just the other CF'er. I've had to remind the nurse to wash her hands before handling the meds, ugh...
 
Z

zeeannie

Guest
In the past three schools our child has attended there has been one other CF'er. At the start, even before I knew about that, I made sure the nurse, and administration, knew what the protocol was. I asked that they make sure they were never in the same class. My daughter found out who the other kid was and made sure she stayed at least three feet away. They actually became friends! It was more like just saying hi from a distance and chatting and stuff. This was in FIRST grade! I'm sure your junior hi kid can handle the balance. I'm not sure knowing what they culture would make me any more comfortable, if I knew they had what we don't, it'd be frustrating because there's nothing I could do about it that I'm not already doing anyway.

Someone mentioned the nurses office. We've arranged for our daughter to come into the main office and if there is no one in the nurses office she can go in and get her meds. If there are any kids at all in there, she waits outside in the main office and the nurse will bring out the meds. That way she's not exposed to anyones germs, not just the other CF'er. I've had to remind the nurse to wash her hands before handling the meds, ugh...
 
Z

zeeannie

Guest
In the past three schools our child has attended there has been one other CF'er. At the start, even before I knew about that, I made sure the nurse, and administration, knew what the protocol was. I asked that they make sure they were never in the same class. My daughter found out who the other kid was and made sure she stayed at least three feet away. They actually became friends! It was more like just saying hi from a distance and chatting and stuff. This was in FIRST grade! I'm sure your junior hi kid can handle the balance. I'm not sure knowing what they culture would make me any more comfortable, if I knew they had what we don't, it'd be frustrating because there's nothing I could do about it that I'm not already doing anyway.
<br />
<br />Someone mentioned the nurses office. We've arranged for our daughter to come into the main office and if there is no one in the nurses office she can go in and get her meds. If there are any kids at all in there, she waits outside in the main office and the nurse will bring out the meds. That way she's not exposed to anyones germs, not just the other CF'er. I've had to remind the nurse to wash her hands before handling the meds, ugh...
 
R

ReneeP

New member
Thanks so much for all the advice and info. To answer Sharon's question, yes, Kaitlyn does carry her own enzymes so she doesn't have to go to the nurse unless she forgets to bring any... the nurse keeps a stash for her. We just started that this year and it has been going well.

I realize there are 2 sides to this issue and everyone feels differently. I tend to sit right on the fence. I can see both sides equally. There are 2 things right now that are pushing me over the fence... 1 is the fact that I know for sure that the other child cultures things that Kaitlyn doesn't and the other child has never been taught to avoid contact with other CF'ers. (the school nurse asked her).

The other thing, and what is really making me pause, is the fact that even the CFF prohibits people who culture B. Cepacia from going to any CF related public event, such as the conferences. And this is for grown people with CF who know very well what to do and not to do. I just keep asking myself, if the CFF feels there is enough of a risk to justify completely banning certain people from attending, then how can I possibly think deliberatly sending my daughter to school every day for the next 5 years with a person who I know cultures it is okay? How can I justify that? And will I be able to live with my decision if she does end up catching something really bad and gettintg sick?

Of course I know there's always a risk. There's a risk that the person behind me in line at the grocery store has CF and cultures B. Cepacia... but that's a risk I can't prevent because I don't know about it. This is a risk I CAN prevent... that's what I don't think I could live with.

The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...

I guess it's just one of the many issues we have faced and will continue to face... all you can do is your best and hope you make the right decisions... as of yet, I am not sure what that decision will be.

Again, thanks to everyone! I really appreciate all the comments. I don't want to make any rash decisions. I want to see it from all different angles so I can make an informed decision...
 
R

ReneeP

New member
Thanks so much for all the advice and info. To answer Sharon's question, yes, Kaitlyn does carry her own enzymes so she doesn't have to go to the nurse unless she forgets to bring any... the nurse keeps a stash for her. We just started that this year and it has been going well.

I realize there are 2 sides to this issue and everyone feels differently. I tend to sit right on the fence. I can see both sides equally. There are 2 things right now that are pushing me over the fence... 1 is the fact that I know for sure that the other child cultures things that Kaitlyn doesn't and the other child has never been taught to avoid contact with other CF'ers. (the school nurse asked her).

The other thing, and what is really making me pause, is the fact that even the CFF prohibits people who culture B. Cepacia from going to any CF related public event, such as the conferences. And this is for grown people with CF who know very well what to do and not to do. I just keep asking myself, if the CFF feels there is enough of a risk to justify completely banning certain people from attending, then how can I possibly think deliberatly sending my daughter to school every day for the next 5 years with a person who I know cultures it is okay? How can I justify that? And will I be able to live with my decision if she does end up catching something really bad and gettintg sick?

Of course I know there's always a risk. There's a risk that the person behind me in line at the grocery store has CF and cultures B. Cepacia... but that's a risk I can't prevent because I don't know about it. This is a risk I CAN prevent... that's what I don't think I could live with.

The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...

I guess it's just one of the many issues we have faced and will continue to face... all you can do is your best and hope you make the right decisions... as of yet, I am not sure what that decision will be.

Again, thanks to everyone! I really appreciate all the comments. I don't want to make any rash decisions. I want to see it from all different angles so I can make an informed decision...
 
R

ReneeP

New member
Thanks so much for all the advice and info. To answer Sharon's question, yes, Kaitlyn does carry her own enzymes so she doesn't have to go to the nurse unless she forgets to bring any... the nurse keeps a stash for her. We just started that this year and it has been going well.

I realize there are 2 sides to this issue and everyone feels differently. I tend to sit right on the fence. I can see both sides equally. There are 2 things right now that are pushing me over the fence... 1 is the fact that I know for sure that the other child cultures things that Kaitlyn doesn't and the other child has never been taught to avoid contact with other CF'ers. (the school nurse asked her).

The other thing, and what is really making me pause, is the fact that even the CFF prohibits people who culture B. Cepacia from going to any CF related public event, such as the conferences. And this is for grown people with CF who know very well what to do and not to do. I just keep asking myself, if the CFF feels there is enough of a risk to justify completely banning certain people from attending, then how can I possibly think deliberatly sending my daughter to school every day for the next 5 years with a person who I know cultures it is okay? How can I justify that? And will I be able to live with my decision if she does end up catching something really bad and gettintg sick?

Of course I know there's always a risk. There's a risk that the person behind me in line at the grocery store has CF and cultures B. Cepacia... but that's a risk I can't prevent because I don't know about it. This is a risk I CAN prevent... that's what I don't think I could live with.

The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...

I guess it's just one of the many issues we have faced and will continue to face... all you can do is your best and hope you make the right decisions... as of yet, I am not sure what that decision will be.

Again, thanks to everyone! I really appreciate all the comments. I don't want to make any rash decisions. I want to see it from all different angles so I can make an informed decision...
 
R

ReneeP

New member
Thanks so much for all the advice and info. To answer Sharon's question, yes, Kaitlyn does carry her own enzymes so she doesn't have to go to the nurse unless she forgets to bring any... the nurse keeps a stash for her. We just started that this year and it has been going well.

I realize there are 2 sides to this issue and everyone feels differently. I tend to sit right on the fence. I can see both sides equally. There are 2 things right now that are pushing me over the fence... 1 is the fact that I know for sure that the other child cultures things that Kaitlyn doesn't and the other child has never been taught to avoid contact with other CF'ers. (the school nurse asked her).

The other thing, and what is really making me pause, is the fact that even the CFF prohibits people who culture B. Cepacia from going to any CF related public event, such as the conferences. And this is for grown people with CF who know very well what to do and not to do. I just keep asking myself, if the CFF feels there is enough of a risk to justify completely banning certain people from attending, then how can I possibly think deliberatly sending my daughter to school every day for the next 5 years with a person who I know cultures it is okay? How can I justify that? And will I be able to live with my decision if she does end up catching something really bad and gettintg sick?

Of course I know there's always a risk. There's a risk that the person behind me in line at the grocery store has CF and cultures B. Cepacia... but that's a risk I can't prevent because I don't know about it. This is a risk I CAN prevent... that's what I don't think I could live with.

The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...

I guess it's just one of the many issues we have faced and will continue to face... all you can do is your best and hope you make the right decisions... as of yet, I am not sure what that decision will be.

Again, thanks to everyone! I really appreciate all the comments. I don't want to make any rash decisions. I want to see it from all different angles so I can make an informed decision...
 
R

ReneeP

New member
Thanks so much for all the advice and info. To answer Sharon's question, yes, Kaitlyn does carry her own enzymes so she doesn't have to go to the nurse unless she forgets to bring any... the nurse keeps a stash for her. We just started that this year and it has been going well.
<br />
<br />I realize there are 2 sides to this issue and everyone feels differently. I tend to sit right on the fence. I can see both sides equally. There are 2 things right now that are pushing me over the fence... 1 is the fact that I know for sure that the other child cultures things that Kaitlyn doesn't and the other child has never been taught to avoid contact with other CF'ers. (the school nurse asked her).
<br />
<br />The other thing, and what is really making me pause, is the fact that even the CFF prohibits people who culture B. Cepacia from going to any CF related public event, such as the conferences. And this is for grown people with CF who know very well what to do and not to do. I just keep asking myself, if the CFF feels there is enough of a risk to justify completely banning certain people from attending, then how can I possibly think deliberatly sending my daughter to school every day for the next 5 years with a person who I know cultures it is okay? How can I justify that? And will I be able to live with my decision if she does end up catching something really bad and gettintg sick?
<br />
<br />Of course I know there's always a risk. There's a risk that the person behind me in line at the grocery store has CF and cultures B. Cepacia... but that's a risk I can't prevent because I don't know about it. This is a risk I CAN prevent... that's what I don't think I could live with.
<br />
<br />The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...
<br />
<br />I guess it's just one of the many issues we have faced and will continue to face... all you can do is your best and hope you make the right decisions... as of yet, I am not sure what that decision will be.
<br />
<br />Again, thanks to everyone! I really appreciate all the comments. I don't want to make any rash decisions. I want to see it from all different angles so I can make an informed decision...
<br />
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ReneeP</b></i>

The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...</end quote></div>

My opinion is that your child should have a say in the matter. Her wishes need to be taken into account.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ReneeP</b></i>

The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...</end quote></div>

My opinion is that your child should have a say in the matter. Her wishes need to be taken into account.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ReneeP</b></i>

The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...</end quote></div>

My opinion is that your child should have a say in the matter. Her wishes need to be taken into account.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ReneeP</b></i>

The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...</end quote>

My opinion is that your child should have a say in the matter. Her wishes need to be taken into account.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ReneeP</b></i>
<br />
<br />The other thing is that I am longer dealing with a child here. Kaitlyn is 13 and has her own feelings and fears which she has very explicitly shared with me. She is scared of getting sick. She doesn't want to risk it. I can reassure her that the risk is minimal, which I have tried to do, but I can't make her any guaranties...</end quote>
<br />
<br />My opinion is that your child should have a say in the matter. Her wishes need to be taken into account.
 
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