A
Aspiemom
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Sakem</b></i>
Leah:
You need to talk to the person on this board that has a NURSE assigned to their PRESCHOOL child for the WHOLE day at their public school. From what I can remember her child has mild CF and does not have any big issues w/ their CF. I'm not sure how they were able to get this arrangment, unless they are in a school district that just has lots of extra money or something. Prehaps she could give you some advice about getting something from the public school district. Sorry, I don't remeber who this was, but prehaps she will see this or someone else knows who I am talking about and can let you know.</end quote></div>
To each his own, and I don't even remember who this was, but I wanted to comment on it. I think it's BEYOND ridiculous. There is NO NEED WHATSOEVER for this type of over-protecting germaphobe behavior. CF kids, like anybody else, need to acquire an immune system. You know how this happens? Exposure to germs. It isn't that hard to figure out. I never disinfected anything as a kid. None of this hyper "oh my god we have to put bleach on everything" rubbish. You know that's why antibiotics are working less? Because everyone disinfects everything. It's totally unnecessary.
Your kid can go to public school like anyone else. It won't kill him, it won't hurt him, it'll be good for him.
I went to public school my entire life (and I'm in college now). I never had a nurse follow me anywhere in school. I only went to the nurse's office before lunch for my enzymes. End of story. I didn't disinfect anything and everything in front of me. I'm doing very well. 70% of my lung function at 23. And no, I don't have "mild" CF. I have a Class I and a Class II mutation. So essentially, in theory, I should be dead. And I'm fine. I attribute this, partially, to having lived a normal life. My mom did not freak out and go overboard, and I'm so glad.
Having CF means doing meds and taking care of your kids. It doesn't mean losing your mind and going way way overboard. For chrissake, they already have a lot of stuff making them stand out, let everything else be as NORMAL as possible. I feel bad for the kid who has a nurse follow him all the live long day. He's going to stand out and be the freak and it's SO UNNECESSARY. (Besides which, when he goes to college or gets a job -- assuming he doesn't stay home until he dies -- his body won't be able to handle it because everything in front of him was disinfected his whole life).
CF kids can be exposed to germs. They can even get colds! *gasp* It's not going to kill them. It would have to be a very specialized and unusual CF case to warrant anything insane like this.
Let the kid go to school. He'll thank you for it.</end quote></div>
I think there are all different levels of CF. Some are much more susceptible to germs and infections as others. Some people only have one lung, some people have additional health issues. For some of us there are few drugs that can help us any more so we have to be proactive so that we don't get sick. You can't judge everyone elses health according to your own and what worked for you.
Leah knows what's best for her son and if she and the doctors feel like he's picking up too much at school that is sending him into frequent exacerbations, then I think it's a good thing to keep him home. I don't think she's putting him in a bubble!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Sakem</b></i>
Leah:
You need to talk to the person on this board that has a NURSE assigned to their PRESCHOOL child for the WHOLE day at their public school. From what I can remember her child has mild CF and does not have any big issues w/ their CF. I'm not sure how they were able to get this arrangment, unless they are in a school district that just has lots of extra money or something. Prehaps she could give you some advice about getting something from the public school district. Sorry, I don't remeber who this was, but prehaps she will see this or someone else knows who I am talking about and can let you know.</end quote></div>
To each his own, and I don't even remember who this was, but I wanted to comment on it. I think it's BEYOND ridiculous. There is NO NEED WHATSOEVER for this type of over-protecting germaphobe behavior. CF kids, like anybody else, need to acquire an immune system. You know how this happens? Exposure to germs. It isn't that hard to figure out. I never disinfected anything as a kid. None of this hyper "oh my god we have to put bleach on everything" rubbish. You know that's why antibiotics are working less? Because everyone disinfects everything. It's totally unnecessary.
Your kid can go to public school like anyone else. It won't kill him, it won't hurt him, it'll be good for him.
I went to public school my entire life (and I'm in college now). I never had a nurse follow me anywhere in school. I only went to the nurse's office before lunch for my enzymes. End of story. I didn't disinfect anything and everything in front of me. I'm doing very well. 70% of my lung function at 23. And no, I don't have "mild" CF. I have a Class I and a Class II mutation. So essentially, in theory, I should be dead. And I'm fine. I attribute this, partially, to having lived a normal life. My mom did not freak out and go overboard, and I'm so glad.
Having CF means doing meds and taking care of your kids. It doesn't mean losing your mind and going way way overboard. For chrissake, they already have a lot of stuff making them stand out, let everything else be as NORMAL as possible. I feel bad for the kid who has a nurse follow him all the live long day. He's going to stand out and be the freak and it's SO UNNECESSARY. (Besides which, when he goes to college or gets a job -- assuming he doesn't stay home until he dies -- his body won't be able to handle it because everything in front of him was disinfected his whole life).
CF kids can be exposed to germs. They can even get colds! *gasp* It's not going to kill them. It would have to be a very specialized and unusual CF case to warrant anything insane like this.
Let the kid go to school. He'll thank you for it.</end quote></div>
I think there are all different levels of CF. Some are much more susceptible to germs and infections as others. Some people only have one lung, some people have additional health issues. For some of us there are few drugs that can help us any more so we have to be proactive so that we don't get sick. You can't judge everyone elses health according to your own and what worked for you.
Leah knows what's best for her son and if she and the doctors feel like he's picking up too much at school that is sending him into frequent exacerbations, then I think it's a good thing to keep him home. I don't think she's putting him in a bubble!