ANOTHER CF CHILD AT MY DAUGHTER'S SCHOOL

[hmw]

I found out because of the arrangements we had to set up re. cross-contamination. Emily and the other child weren't in the same class but DID share the same lunch wave and snack time at her prior school, so we had to decide how to handle that (in this case, Emily's class swapped to go in for the next wave (15min later) so enzyme time didn't overlap. In our case, disclosure was easy: the other mother had it in writing that if another student came along with cf, it could be disclosed. Now, whether this was already in place or the nurse called to discuss it with this mom at the time Emily was dx'ed to gain permission I do not know, but this was how it was possible. Of course, I allowed this as well- should this happen in future I'd want other parents to be prepared and be able to contact me, etc.) The other parent with the immune-compromised child also discloses to the entire student body w/a letter sent home to the parents the issues her child has (without stating names, although most of us know who she is by now) to help protect her. Pneumonia and several other relatively common illnesses could easily kill her.

If parents are willing to disclose- and protect the school staff by putting it in writing- then the school is protected I would think. If it's the nurse or other staff just blabbing about kids' health conditions that is a different story altogether, but this is for the protection of the children involved.

eta> In our case, asking our center if they knew of anyone in our district may not have been helpful, since this child is followed by the other center in our state. But asking the social worker at your center is a good idea, I think (they can give other good ideas on how to deal with with school issues in general anyway.)

 

[hmw]

I found out because of the arrangements we had to set up re. cross-contamination. Emily and the other child weren't in the same class but DID share the same lunch wave and snack time at her prior school, so we had to decide how to handle that (in this case, Emily's class swapped to go in for the next wave (15min later) so enzyme time didn't overlap. In our case, disclosure was easy: the other mother had it in writing that if another student came along with cf, it could be disclosed. Now, whether this was already in place or the nurse called to discuss it with this mom at the time Emily was dx'ed to gain permission I do not know, but this was how it was possible. Of course, I allowed this as well- should this happen in future I'd want other parents to be prepared and be able to contact me, etc.) The other parent with the immune-compromised child also discloses to the entire student body w/a letter sent home to the parents the issues her child has (without stating names, although most of us know who she is by now) to help protect her. Pneumonia and several other relatively common illnesses could easily kill her.
<br />
<br />If parents are willing to disclose- and protect the school staff by putting it in writing- then the school is protected I would think. If it's the nurse or other staff just blabbing about kids' health conditions that is a different story altogether, but this is for the protection of the children involved.
<br />
<br />eta> In our case, asking our center if they knew of anyone in our district may not have been helpful, since this child is followed by the other center in our state. But asking the social worker at your center is a good idea, I think (they can give other good ideas on how to deal with with school issues in general anyway.)

 

[mamaScarlett]

Being a mom myself I can of course understand your concern and need to protect your child in any way you possibly can. Especially when so much with this disease is out of our control, you want to take control when you can.
I think there's been so many extremes over the years with Cf and cross contamination. You had the years of shared rooms, and camps...which was one extreme and we see where that got us. And then once that was realized you saw the 'crackdown' on cross contamination and in some cases a frenzy/germaphobe reaction.
Somewhere in the middle has to be the right way.
I highly doubt that I would pull my child out of school but their age and other factors would depend a lot on it. How attached to their teacher, classmates, routine, bus situation, etc are they? Its a tricky balance, bc Cf takes so much away from the patients life as it is-being in the school they love is very important. I would think alot about your and her situation as individuals, and not just in a black and white way. And I'd talk to a principal, your Cf team, and definitely social worker to get feedback, then make your decision having weighed everything.
And having Cepacia myself, I am highly concerned with not passing it on to others. (i have other family members with Cf that are non-cepacia, not to mention the clinic situation etc) I'm also concerned about not picking up any more bugs bc I need my lungs to keep everything else out. I've got enough as it is! But my doctor who is pretty balanced in this area has reminded me that you can walk by any random person, have them sneeze on you (or viceversa) and they could have Cf. Anywhere you go there is potential for that (plus all other types of respiratory diseases).
I just went to visit my newborn nephew in the hospital and held and kissed him (he and my sister are non cf and healthy), the next day they found out he and other babies caught mrsa infections from the hospital. My whole family freaked out bc I had been there and they were worried about me catching it.
It turned out fine, but its an example that Cf or non Cf situations can impact us, and most are out of our control. I hope your family makes the right decision for you. I'm sure its a very hard one.

*Another reminder, only bc some comments were made about Cepacia which is often referred to as the death bug-OF COURSE no one wants it, including me...But just to clarify remember it depends on the type of Cepacia you culture and how aggressivly you treat it. I have seen too many poor parents on these websites with kids that are DX with it, come here and hear something right off the bat, like their child won't live anymore. I have had it for 15 years, and am fine. There are theories that it may even be keeping my other bugs at bay. Not making light of it AT ALL, just making sure that facts are facts here.

 

[mamaScarlett]

Being a mom myself I can of course understand your concern and need to protect your child in any way you possibly can. Especially when so much with this disease is out of our control, you want to take control when you can.
I think there's been so many extremes over the years with Cf and cross contamination. You had the years of shared rooms, and camps...which was one extreme and we see where that got us. And then once that was realized you saw the 'crackdown' on cross contamination and in some cases a frenzy/germaphobe reaction.
Somewhere in the middle has to be the right way.
I highly doubt that I would pull my child out of school but their age and other factors would depend a lot on it. How attached to their teacher, classmates, routine, bus situation, etc are they? Its a tricky balance, bc Cf takes so much away from the patients life as it is-being in the school they love is very important. I would think alot about your and her situation as individuals, and not just in a black and white way. And I'd talk to a principal, your Cf team, and definitely social worker to get feedback, then make your decision having weighed everything.
And having Cepacia myself, I am highly concerned with not passing it on to others. (i have other family members with Cf that are non-cepacia, not to mention the clinic situation etc) I'm also concerned about not picking up any more bugs bc I need my lungs to keep everything else out. I've got enough as it is! But my doctor who is pretty balanced in this area has reminded me that you can walk by any random person, have them sneeze on you (or viceversa) and they could have Cf. Anywhere you go there is potential for that (plus all other types of respiratory diseases).
I just went to visit my newborn nephew in the hospital and held and kissed him (he and my sister are non cf and healthy), the next day they found out he and other babies caught mrsa infections from the hospital. My whole family freaked out bc I had been there and they were worried about me catching it.
It turned out fine, but its an example that Cf or non Cf situations can impact us, and most are out of our control. I hope your family makes the right decision for you. I'm sure its a very hard one.

*Another reminder, only bc some comments were made about Cepacia which is often referred to as the death bug-OF COURSE no one wants it, including me...But just to clarify remember it depends on the type of Cepacia you culture and how aggressivly you treat it. I have seen too many poor parents on these websites with kids that are DX with it, come here and hear something right off the bat, like their child won't live anymore. I have had it for 15 years, and am fine. There are theories that it may even be keeping my other bugs at bay. Not making light of it AT ALL, just making sure that facts are facts here.

 

[mamaScarlett]

Being a mom myself I can of course understand your concern and need to protect your child in any way you possibly can. Especially when so much with this disease is out of our control, you want to take control when you can.
<br />I think there's been so many extremes over the years with Cf and cross contamination. You had the years of shared rooms, and camps...which was one extreme and we see where that got us. And then once that was realized you saw the 'crackdown' on cross contamination and in some cases a frenzy/germaphobe reaction.
<br />Somewhere in the middle has to be the right way.
<br />I highly doubt that I would pull my child out of school but their age and other factors would depend a lot on it. How attached to their teacher, classmates, routine, bus situation, etc are they? Its a tricky balance, bc Cf takes so much away from the patients life as it is-being in the school they love is very important. I would think alot about your and her situation as individuals, and not just in a black and white way. And I'd talk to a principal, your Cf team, and definitely social worker to get feedback, then make your decision having weighed everything.
<br />And having Cepacia myself, I am highly concerned with not passing it on to others. (i have other family members with Cf that are non-cepacia, not to mention the clinic situation etc) I'm also concerned about not picking up any more bugs bc I need my lungs to keep everything else out. I've got enough as it is! But my doctor who is pretty balanced in this area has reminded me that you can walk by any random person, have them sneeze on you (or viceversa) and they could have Cf. Anywhere you go there is potential for that (plus all other types of respiratory diseases).
<br />I just went to visit my newborn nephew in the hospital and held and kissed him (he and my sister are non cf and healthy), the next day they found out he and other babies caught mrsa infections from the hospital. My whole family freaked out bc I had been there and they were worried about me catching it.
<br />It turned out fine, but its an example that Cf or non Cf situations can impact us, and most are out of our control. I hope your family makes the right decision for you. I'm sure its a very hard one.
<br />
<br />*Another reminder, only bc some comments were made about Cepacia which is often referred to as the death bug-OF COURSE no one wants it, including me...But just to clarify remember it depends on the type of Cepacia you culture and how aggressivly you treat it. I have seen too many poor parents on these websites with kids that are DX with it, come here and hear something right off the bat, like their child won't live anymore. I have had it for 15 years, and am fine. There are theories that it may even be keeping my other bugs at bay. Not making light of it AT ALL, just making sure that facts are facts here.

 

[Mommafirst]

We found out at the local great strides walk. My social worker new I was interested in meeting other families and brought me over to meet this other mom. I don't believe the social worker knew this was going to be a district issue, our kids were really little still, she had no reason to even think about where we all lived. Anyway We started talking....where do you live? oh us too!!! ...how old are your kids? mine too!! what elementary? US TOO!!!

The real irony came out later on, turns out we had the same OB as well. We don't live in a small community -- lots of doctors and hospitals abound. My OB was talking to me and said in all her years of practice she never had a baby born with CF, and then she had twins and Alyssa both born within a few months of each other.

 

[Mommafirst]

We found out at the local great strides walk. My social worker new I was interested in meeting other families and brought me over to meet this other mom. I don't believe the social worker knew this was going to be a district issue, our kids were really little still, she had no reason to even think about where we all lived. Anyway We started talking....where do you live? oh us too!!! ...how old are your kids? mine too!! what elementary? US TOO!!!

The real irony came out later on, turns out we had the same OB as well. We don't live in a small community -- lots of doctors and hospitals abound. My OB was talking to me and said in all her years of practice she never had a baby born with CF, and then she had twins and Alyssa both born within a few months of each other.

 

[Mommafirst]

We found out at the local great strides walk. My social worker new I was interested in meeting other families and brought me over to meet this other mom. I don't believe the social worker knew this was going to be a district issue, our kids were really little still, she had no reason to even think about where we all lived. Anyway We started talking....where do you live? oh us too!!! ...how old are your kids? mine too!! what elementary? US TOO!!!
<br />
<br />The real irony came out later on, turns out we had the same OB as well. We don't live in a small community -- lots of doctors and hospitals abound. My OB was talking to me and said in all her years of practice she never had a baby born with CF, and then she had twins and Alyssa both born within a few months of each other.

 

[SIcklyhatED]

I've read through this thread and I'm sorry, but the amount of pure <b>RAGE</b> this has sparked in me....

Maybe it's becaue I have a very mild case of CF, or I try to live my life apart from it, but shame on you for over-reacting. Yes, I said it. SHAME on you. Do you even KNOW what I would GIVE to meet another patient with CF? This iscolation, for me, has led to severe depression, an eating disorder that I'm STILL dealing with, self-injury, and a myriad of other emotional/mental complications.

If you didn't know the other child had CF you'd just live your life as usual. You'd never know and would never worry and it WOULDN"T MAKE A DAMN DIFFERENCE. The amount of germs and whatnot at school (and your DOCTORS OFFICE) is unavoidable. The chances of another child having someother illness or condition is about !00%. adding one other CF kid isn't going to make much difference.

Should all CF patient live in BUBBLE then? a bubble of close-mindedness and over protection? You're robbing your child of an opportunity to met someone who is like her. Just like a parent to think of only their physical health, not their mental health

Call me crass, and yes i understand it's your child and you want her to be healthy (I commend you for that), but this is over the top. I see that most people comenting on this thread are parents. Have any of you ASKED your child about this situation? And no, it doesn't matter how young they are. TALK to them and EXPLAIN becaue they end up just as f**ked up as me.

Rant. Over.

 

[SIcklyhatED]

I've read through this thread and I'm sorry, but the amount of pure <b>RAGE</b> this has sparked in me....

Maybe it's becaue I have a very mild case of CF, or I try to live my life apart from it, but shame on you for over-reacting. Yes, I said it. SHAME on you. Do you even KNOW what I would GIVE to meet another patient with CF? This iscolation, for me, has led to severe depression, an eating disorder that I'm STILL dealing with, self-injury, and a myriad of other emotional/mental complications.

If you didn't know the other child had CF you'd just live your life as usual. You'd never know and would never worry and it WOULDN"T MAKE A DAMN DIFFERENCE. The amount of germs and whatnot at school (and your DOCTORS OFFICE) is unavoidable. The chances of another child having someother illness or condition is about !00%. adding one other CF kid isn't going to make much difference.

Should all CF patient live in BUBBLE then? a bubble of close-mindedness and over protection? You're robbing your child of an opportunity to met someone who is like her. Just like a parent to think of only their physical health, not their mental health

Call me crass, and yes i understand it's your child and you want her to be healthy (I commend you for that), but this is over the top. I see that most people comenting on this thread are parents. Have any of you ASKED your child about this situation? And no, it doesn't matter how young they are. TALK to them and EXPLAIN becaue they end up just as f**ked up as me.

Rant. Over.

 

[SIcklyhatED]

I've read through this thread and I'm sorry, but the amount of pure <b>RAGE</b> this has sparked in me....
<br />
<br />Maybe it's becaue I have a very mild case of CF, or I try to live my life apart from it, but shame on you for over-reacting. Yes, I said it. SHAME on you. Do you even KNOW what I would GIVE to meet another patient with CF? This iscolation, for me, has led to severe depression, an eating disorder that I'm STILL dealing with, self-injury, and a myriad of other emotional/mental complications.
<br />
<br />If you didn't know the other child had CF you'd just live your life as usual. You'd never know and would never worry and it WOULDN"T MAKE A DAMN DIFFERENCE. The amount of germs and whatnot at school (and your DOCTORS OFFICE) is unavoidable. The chances of another child having someother illness or condition is about !00%. adding one other CF kid isn't going to make much difference.
<br />
<br />Should all CF patient live in BUBBLE then? a bubble of close-mindedness and over protection? You're robbing your child of an opportunity to met someone who is like her. Just like a parent to think of only their physical health, not their mental health
<br />
<br />Call me crass, and yes i understand it's your child and you want her to be healthy (I commend you for that), but this is over the top. I see that most people comenting on this thread are parents. Have any of you ASKED your child about this situation? And no, it doesn't matter how young they are. TALK to them and EXPLAIN becaue they end up just as f**ked up as me.
<br />
<br />Rant. Over.

 

[hmw]

I am very glad you have a very mild case of CF. Many of the children here are not as blessed as you are.

The vast majority of the parents here do ALL that they can to provide their children with lives apart from their CF and as healthy and balanced a life as possible. We think of their mental and emotional health EVERY DAY.

I am sorry you have grown up feeling isolated and that this has led to so many consequences in your life. This is something that is heartbreaking for any of us as parents to see and that we would never want our children to experience. That is WHY we try to give our children as much of a full, normal life as we can. But we still have to balance their medical needs with everything else in their lives. They can make their own choices about what contact they will have w/others w/CF when they are old enough to understand the risks involved of cross-contamination and decide how to approach it- but as parents it's OUR job to keep them safe when they are children based on what we know now.

The former CF camps and the way CF care USED to be handled at hospitals proves that when precautions are not taken it DOES matter. Germs can and do spread. It makes a difference.

And yes, we will explain to our children why these things are necessary. We give them credit as intelligent people regardless of their age.

Please try to keep this respectful...

 

[hmw]

I am very glad you have a very mild case of CF. Many of the children here are not as blessed as you are.

The vast majority of the parents here do ALL that they can to provide their children with lives apart from their CF and as healthy and balanced a life as possible. We think of their mental and emotional health EVERY DAY.

I am sorry you have grown up feeling isolated and that this has led to so many consequences in your life. This is something that is heartbreaking for any of us as parents to see and that we would never want our children to experience. That is WHY we try to give our children as much of a full, normal life as we can. But we still have to balance their medical needs with everything else in their lives. They can make their own choices about what contact they will have w/others w/CF when they are old enough to understand the risks involved of cross-contamination and decide how to approach it- but as parents it's OUR job to keep them safe when they are children based on what we know now.

The former CF camps and the way CF care USED to be handled at hospitals proves that when precautions are not taken it DOES matter. Germs can and do spread. It makes a difference.

And yes, we will explain to our children why these things are necessary. We give them credit as intelligent people regardless of their age.

Please try to keep this respectful...

 

[hmw]

I am very glad you have a very mild case of CF. Many of the children here are not as blessed as you are.
<br />
<br />The vast majority of the parents here do ALL that they can to provide their children with lives apart from their CF and as healthy and balanced a life as possible. We think of their mental and emotional health EVERY DAY.
<br />
<br />I am sorry you have grown up feeling isolated and that this has led to so many consequences in your life. This is something that is heartbreaking for any of us as parents to see and that we would never want our children to experience. That is WHY we try to give our children as much of a full, normal life as we can. But we still have to balance their medical needs with everything else in their lives. They can make their own choices about what contact they will have w/others w/CF when they are old enough to understand the risks involved of cross-contamination and decide how to approach it- but as parents it's OUR job to keep them safe when they are children based on what we know now.
<br />
<br />The former CF camps and the way CF care USED to be handled at hospitals proves that when precautions are not taken it DOES matter. Germs can and do spread. It makes a difference.
<br />
<br />And yes, we will explain to our children why these things are necessary. We give them credit as intelligent people regardless of their age.
<br />
<br />Please try to keep this respectful...

 

[Tammy15]

My son with CF had a best friend with CF also in the same grade and classes as we are in small school. His sister with CF also same house and school. I have to say there were no issues in fact as all were on same meds the other mother and I knew that when one kid conviently forgot meds if that were at each others house there was no getting out of tx and medication. They had each other to really talk. When one was sick we of ocurse kept them separated. I have to say my kids caught more colds and flu from kids whose parents send them to school sick . I believe most CF parents reconize early signs of something brewing and keep kids home. But that could have just been me and the the other CF friend in town.

 

[Tammy15]

My son with CF had a best friend with CF also in the same grade and classes as we are in small school. His sister with CF also same house and school. I have to say there were no issues in fact as all were on same meds the other mother and I knew that when one kid conviently forgot meds if that were at each others house there was no getting out of tx and medication. They had each other to really talk. When one was sick we of ocurse kept them separated. I have to say my kids caught more colds and flu from kids whose parents send them to school sick . I believe most CF parents reconize early signs of something brewing and keep kids home. But that could have just been me and the the other CF friend in town.

 

[Tammy15]

My son with CF had a best friend with CF also in the same grade and classes as we are in small school. His sister with CF also same house and school. I have to say there were no issues in fact as all were on same meds the other mother and I knew that when one kid conviently forgot meds if that were at each others house there was no getting out of tx and medication. They had each other to really talk. When one was sick we of ocurse kept them separated. I have to say my kids caught more colds and flu from kids whose parents send them to school sick . I believe most CF parents reconize early signs of something brewing and keep kids home. But that could have just been me and the the other CF friend in town.

 

[hmw]

I wouldn't worry about my daughter catching a cold or flu from another child with cf. That is in inevitable in the school environment (or anywhere large groups of people gather.) It's the other risks of cross-contamination that concern me.

It truly upsets me that CF is as isolating a disease that it is. But once a child is colonized with something, it's often- not always, but often- there to stay. I would be devastated if Emily gave something she was harboring to another child w/CF, and since she's never had a bronch, I don't really know *what* she's got down in those lungs that causes her exacerbations.

 

[hmw]

I wouldn't worry about my daughter catching a cold or flu from another child with cf. That is in inevitable in the school environment (or anywhere large groups of people gather.) It's the other risks of cross-contamination that concern me.

It truly upsets me that CF is as isolating a disease that it is. But once a child is colonized with something, it's often- not always, but often- there to stay. I would be devastated if Emily gave something she was harboring to another child w/CF, and since she's never had a bronch, I don't really know *what* she's got down in those lungs that causes her exacerbations.

 

[hmw]

I wouldn't worry about my daughter catching a cold or flu from another child with cf. That is in inevitable in the school environment (or anywhere large groups of people gather.) It's the other risks of cross-contamination that concern me.
<br />
<br />It truly upsets me that CF is as isolating a disease that it is. But once a child is colonized with something, it's often- not always, but often- there to stay. I would be devastated if Emily gave something she was harboring to another child w/CF, and since she's never had a bronch, I don't really know *what* she's got down in those lungs that causes her exacerbations.