ANOTHER CF CHILD AT MY DAUGHTER'S SCHOOL

[chrissyd]

First let me preface my post as saying that I am a CFer, I have a child but she does not have CF.

I never expected when I saw this thread the other day that it would become so emotionally charged. The fact is that the OP is trying to keep her child healthy, and *that* is commendable.

Personally I had never met another person with CF (face to face) until last year. I went to a CF meet up and met two people with CF; Patti and Joni. I had no issues and I can't wait for our next meeting. I just felt such a strong bond knowing that we all have something so intence and tragic in common. It is important to encourage contact of some sort (email, online support groups, etc.)--but I'm talking about when your child is ready and understands. I'm not sure how old she is (6?); but we are all ready at different times in our lives and you'll know when she is ready.

ANYWHO...You didn't ask about any of that stuff so in keeping with what you asked about and in hopes to get away from anymore "over reation" posts:

I think that the advice about talking with the school and setting healthy boundries were great, I also agree that you should sit down and have a heart to heart with your childs CF doc and get his/her oppinion on this whole thing. I think opening line of communication with the other family couldn't hurt. Maybe you guys could be support for each other? Also you could keep tabs with cultures, if the other family is ok with discussing them.

A final note:
I do not think be cautious is an over reaction and I wish that more would be supportive enough to chat with you and give advice rather that criticize. CF is not the same for every patient and that means that we *all* deal with this disease differently. We come to this site for support, not to feel judged.

<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

First let me preface my post as saying that I am a CFer, I have a child but she does not have CF.

I never expected when I saw this thread the other day that it would become so emotionally charged. The fact is that the OP is trying to keep her child healthy, and *that* is commendable.

Personally I had never met another person with CF (face to face) until last year. I went to a CF meet up and met two people with CF; Patti and Joni. I had no issues and I can't wait for our next meeting. I just felt such a strong bond knowing that we all have something so intence and tragic in common. It is important to encourage contact of some sort (email, online support groups, etc.)--but I'm talking about when your child is ready and understands. I'm not sure how old she is (6?); but we are all ready at different times in our lives and you'll know when she is ready.

ANYWHO...You didn't ask about any of that stuff so in keeping with what you asked about and in hopes to get away from anymore "over reation" posts:

I think that the advice about talking with the school and setting healthy boundries were great, I also agree that you should sit down and have a heart to heart with your childs CF doc and get his/her oppinion on this whole thing. I think opening line of communication with the other family couldn't hurt. Maybe you guys could be support for each other? Also you could keep tabs with cultures, if the other family is ok with discussing them.

A final note:
I do not think be cautious is an over reaction and I wish that more would be supportive enough to chat with you and give advice rather that criticize. CF is not the same for every patient and that means that we *all* deal with this disease differently. We come to this site for support, not to feel judged.

<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

First let me preface my post as saying that I am a CFer, I have a child but she does not have CF.
<br />
<br />I never expected when I saw this thread the other day that it would become so emotionally charged. The fact is that the OP is trying to keep her child healthy, and *that* is commendable.
<br />
<br />Personally I had never met another person with CF (face to face) until last year. I went to a CF meet up and met two people with CF; Patti and Joni. I had no issues and I can't wait for our next meeting. I just felt such a strong bond knowing that we all have something so intence and tragic in common. It is important to encourage contact of some sort (email, online support groups, etc.)--but I'm talking about when your child is ready and understands. I'm not sure how old she is (6?); but we are all ready at different times in our lives and you'll know when she is ready.
<br />
<br />ANYWHO...You didn't ask about any of that stuff so in keeping with what you asked about and in hopes to get away from anymore "over reation" posts:
<br />
<br />I think that the advice about talking with the school and setting healthy boundries were great, I also agree that you should sit down and have a heart to heart with your childs CF doc and get his/her oppinion on this whole thing. I think opening line of communication with the other family couldn't hurt. Maybe you guys could be support for each other? Also you could keep tabs with cultures, if the other family is ok with discussing them.
<br />
<br />A final note:
<br />I do not think be cautious is an over reaction and I wish that more would be supportive enough to chat with you and give advice rather that criticize. CF is not the same for every patient and that means that we *all* deal with this disease differently. We come to this site for support, not to feel judged.
<br />
<br /><img src="i/expressions/rose.gif" border="0">

 

[Ratatosk]

I too would be devastated should another person culture what DS has cultured in the past. He cultured pseudomonas at 3 months. Pseudo can live on surfaces for days. Most of my friends' children have cultured staph and are dreading the day their children may culture pseudomonas. DS has also cultured some other bugs. The child who follows behind him in school spent the first 3 years of his life in the hospital and just underwent yet another sinus surgery. So I worry about that child.

DS leads a fairly normal life -- he goes to school, is active in sports -- but he also vests and does nebs 90 minutes a day and then has an additional 40 minutes nebbing tobi.

 

[Ratatosk]

I too would be devastated should another person culture what DS has cultured in the past. He cultured pseudomonas at 3 months. Pseudo can live on surfaces for days. Most of my friends' children have cultured staph and are dreading the day their children may culture pseudomonas. DS has also cultured some other bugs. The child who follows behind him in school spent the first 3 years of his life in the hospital and just underwent yet another sinus surgery. So I worry about that child.

DS leads a fairly normal life -- he goes to school, is active in sports -- but he also vests and does nebs 90 minutes a day and then has an additional 40 minutes nebbing tobi.

 

[Ratatosk]

I too would be devastated should another person culture what DS has cultured in the past. He cultured pseudomonas at 3 months. Pseudo can live on surfaces for days. Most of my friends' children have cultured staph and are dreading the day their children may culture pseudomonas. DS has also cultured some other bugs. The child who follows behind him in school spent the first 3 years of his life in the hospital and just underwent yet another sinus surgery. So I worry about that child.
<br />
<br />DS leads a fairly normal life -- he goes to school, is active in sports -- but he also vests and does nebs 90 minutes a day and then has an additional 40 minutes nebbing tobi.
<br />