School

[ejwiegert]

A 504 in the US safeguards a child's needs. You can include things like, after handling "community" supplies in the classroom (markers, scissors, etc.) your daughter must be allowed to use her anti-bac. This will prevent a teacher from seeing her use it and confiscating (sp) it or "calling her out" about it. Usually, once teachers are made aware (speaking from a teacher's perspective) we'll do everything we can for a child with special circumstances. It is an invaulable tool and when done correctly can really protect your child's rights.

As for contact with the other CF child in the 504, if the other child's identity is not made known, then all you can put in the 504 is precautions for your child. You could put a provision in there if the administration or faculty know that your child is in the same classroom or ends up sitting next to another CF child at an assembly or something, the administration/faculty has the responsibilty to move the two children. I'm sure the administration knows who the other CF child is and they can take care of the situation without causing embarassment to either child. That is why we pay them the "big bucks"

Hope this helps! Feel free to email ejwiegert@gmail.com or private message me if you need more info.

Em

 

[EnergyGal]

to the original poster, lovemygirl

I hear your frustration. I remember as a child being afraid of potential germs and sickness and asked my mom many questions about germs.

She taught me things that I needed to be aware of in public places. She said to wash my hands after touching door knobs and just be careful not to get too close to someone who appeared sick. I thought the best defense of catching germs were to do extra therapies to keep my lungs clear because any germ has a much better chance of being fought off if the body is healthy. So that is my advice to you. Not too worry because that can make you both sick and eventually lead to many problems. I would teach your daughter not to be afraid of any germs. Keep her healthy and let her understand the importance of good cF clearance and taking her meds and she will lead a normal life. I taught myself not to touch my face unless my hands were clean.

I believe that a flu or bad viral bug will be more of a problem if a person with cf is not aware of good hygiene and taking good care of their health.

Instead of focussing on what you cannot control focus on the things that you can control and do them all. Not worrying, help to build confidence within your daughter, teaching her to relax, getting good sleep, exercise and eating well.

I think it is very important for her to be aware of who is around her not only for another cfer but when she is at a hospital or cf clinic. The world is filled with germs and if she is careful and lives a stress free life she will live a long time.

I would still see what you can do as a parent to keep her separate from the child with cf as well as let her teachers know that she can change her desk if the child next to her has a cold.

I wish you the best and you will be in my thoughts

 

[Allie]

I have a serious question. For those who don't want thier kids in a classroom ever with another CFer, what about this?

Your kids are in high school. I teach a course in creative writing. I am the only teacher for that course. One class of it. What if both CF kids want to take that course, do I tell one no? This applies to a lot of courses at my school. Spanish 3 and 4, all german courses, all latin courses, a lot of history courses, jewelry, photography, ceramics. What would I do? Some of these courses are full year, so you can't say "switch off semesters"

 

[Jane]

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

I have a serious question.

Your kids are in high school. I teach a course in creative writing. I am the only teacher for that course. One class of it. What if both CF kids want to take that course, do I tell one no? <div class="FTQUOTE"><begin quote>

I've thought about that in my school too. SO far we've been lucky and the kids w/cf have all been able to be assigned to the classes they want. As they get into more advanced classes that may be the case. I'm not sure what I'll do then.

 

[anonymous]

Allie,
I was assuming we were speaking about grade school aged children?? Obviously (at least in my opinion), it will be different when the child's older. High school, college, etc, the child will be old enough to understand the consequences/ramifications of friendship and old enough to make <b>his/her own</b> decision(s) on how to proceed. Plus, most of the "one course" only classes in high school are for junior/senior year. At that point, if my child, understanding the risks, chose to be in the class, or even to have a friendship of sorts with the other child, as a parent, I would respect that. Just my thoughts<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lovemygirl]

Thanks for the info on the 504. We live in a small community and I am having to put my faith in the staff at the school. I don't think it is necessary to put all of this in writing. They do not want either of the kids to get sick and I am sure that they are taking every precaution (without going overboard).
I too am wondering what will happen in high school and beyond. We have 3 kids all of the same age in our community and eventually they will all end up together. Perhaps this is just preparation for things to come. Unfortunately, it was not handled to my liking but now we are moving forward.

 

[NoExcuses]

.

 

[anonymous]

personally, I'd be more concerned about the parents of the non-CF kids who send their children to school even when they're sick. CF parents know enough about keeping an eye on infection that they keep their kid home when they aren't feeling well.

 

[anonymous]

I don't know. You say you came here for support and that you didn't want to be called names or anything but that is what you are doing to this other family WHO YOU KNOW NOTHING ABOUT. All you know about then is really gossip isn't it? it is just what other people tell you and who knows if that is true. So you are calling them mean things ( for example "not stooping to their level") when you don't know their situation.

I think overall most people are just saying you are being over protective, which you are, and that is their opinion. It is not said to be mean, just what they think. You say that you are going to tell your daughter that she should stay away from this boy when you find out who he is. How are you planning to do that? You don't know them so how can you find out?

Sue 24w/CF

 

[EnergyGal]

I do not think that one can catch mrsa and cepacia unless their immune system is compromised. If your child has a healthy cf and takes great care of herself and keeps her body clean by washing her hands etc... her chances of picking up a cf related germ goes way down in my opinion. I of course cannot say for sure but I know for me, all my cf friends who had Cepacia, i just kept a few feet distance and I was fine. I really believe in keeping the chest as clean as possible. Please do not worry. All you can do is do the best you can.

 

[NoExcuses]

.

 

[EnergyGal]

I only thought that if you are old and immunocompromised you can catch MRSA. That is pretty scary Amy if this is true.

 

[Emily65Roses]

I was always in the 90-100% for my PFTs and got MRSA when I was 16. My PFTs immediately went down to 44%, lowest I've ever been.

 

[lovemygirl]

Sue,
I am admittedly overprotective of her. I worry that she will resent this in the future but changing my personality at this age would be somewhat difficult. The information I have about the family is strictly from the hospital and the school so I believe my resources to be reliable. Keep in mind that a lot is said in anger and frustration as well.
Finding out who the family is will be very easy because it is a small community and a small school (Kindergarten - grade 2 only). Everyone knows everyone and someone will eventually mention the new family from .... I have no intention of seeking them out or stalking them but when the information reveals itself our daughter will be told.
My last posting was only that I didn't want to be called a liar (by Kylie). I already admitted to being overprotective and a bit hysterical. I have no trouble when someone states the truth but I do not appreciate being called a liar. I have no reason to come on this forum and lie.
I have a meeting with the CF team this week and we have a lot of questions. I appreciate all the feedback and as I mentioned it will not change who I am but a new perspective is always a good thing.

 

[anonymous]

lovemygirl - it is completely understandable to feel overprotective. She is your daughter - your own flesh and blood and you should not be critized for wanting to do everything possible in her best interests. I think that some people should consider that parents, spouses, CFers, etc. come here for support, advice and constructive criticism. That doesn't mean we're allowed to tear them down, so please show a little consideration and compasssion.

 

[kybert]

good lord you are stilll going on about hunting this family down. why dont you just hire a hitman. sounds like what you are looking for. while youre at it, you can put all the other cfers in your town on the list.

*shakes head*

 

[kybert]

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

lovemygirl - it is completely understandable to feel overprotective. She is your daughter - your own flesh and blood and you should not be critized for wanting to do everything possible in her best interests. I think that some people should consider that parents, spouses, CFers, etc. come here for support, advice and constructive criticism. That doesn't mean we're allowed to tear them down, so please show a little consideration and compasssion.</end quote></div>

so let me get this straight. we cant tell lovemygirl she is going about this all the wrong way, but she is allowed to tear down and gossip about a family who cant even defend themselves? i for one am not going to pat someone on the back for doing something i find highly disrespectful just because 'this is a community and we are supposed to be supportive wah wah'. i would be horrified if someone was trying to find out private information about me because THEY cant handle THEIR OWN affairs properly. this is why privacy laws were put in place, to protect people like this family. they obviously dont want to have contact so why cant she leave it at that? they deserve their privacy and lovemygirl needs to focus on more important things.

 

[lovemygirl]

Kylie,
I think we need to agree to disagree and let it be. You think I am a horrible person and you are entitled to your opinion as I am entitled to mine. I am certainly not going to lose sleep over it.
I am focusing on the most important thing in my life, which is my daughter.

 

[Emily65Roses]

I think our main concern is... you also need to focus on the most important thing in your daughter's life.. her <i>life</i>. Not only her health. But her <b>life</b>.

 

[lovemygirl]

Emily,
I am focusing much better this week than last and her life and quality of it are the most important thing to me. As I said in the past I was highly emotional when I originally posted. I have left it in the hands of the school to take the necessary precautions and keep them separated. I will meet with her Dr this week for more info on the actual risks.
There is no need to worry about her not living. She is very active in all aspects of life and I would never take that away from her. Look below at my signature quote... I live by it. She leads a very full life and I would not let someone take that away from her.
If I wanted her to live in a bubble then I would have had her switch schools or be home schooled. She is continuing to live the life she had before any of this situation came about and that will not change.