School

[thelizardqueen]

I tend to think that sterilizing gym equipment is being a tad overboard. I mean realistically thinking, do you think that they'll sterilize it ALL the time? I doubt it. Just give your kid purell handwash, and tell her/him to use it all the time. And I agree with everyone else, so I won't repeat what's already been said.

 

[sullihs]

<div class="FTQUOTE"><begin quote>Last anon (12:40), I just hope you know... contact with other CFers or not, your son will more than likely culture pseudo at one point or another. Just a matter of when, really. Not saying this to be annoying or rude, or whatever other negative adjectives may be thrown at me. Just to make sure you're aware.</end quote></div>

Emily65Roses -
My son has already cultured pseud once in the past and I know that he will culture it again in the future. I also know that the longer he goes without colonizing it in his lungs, the better his long-term prognosis is. I also know I have to pick my battles because I can't protect him from everything. Btw, I don't throw negative adjectives at people, everyone is entitled to their own opinion.

 

[julie]

Did you even read her post sullihs?????? Emily said, "Not saying this to be annoying or rude, or whatever other negative adjectives may be thrown at <b>ME</b>." She wasn't saying anything to anyone else or throwing any negative adjectives at anyone else, she was prefacing her post with a, please don't take this the wrong way, I mean well.....

Maybe you ought to read before your criticize, I think you owe her an apology, but that's just me.

You are right, everyone is entitled to their own opinion and she's entitled to hers. As an adult with CF, you might want to genuinely consider her opinion, and the opinion of other adults with CF. NOt that they are always right, but they are so willing to share what their parents did for them that did and didn't work well... help prevent other parents from making some of the same mistakes.

Are you aware your son can pick up pseudo from playing in the grass, in the dirt, in the water???? It's more likely he picks it up from there than from playing in the gym where another CFer played earlier that day. Are you going to prevent him from sitting/walking in grass, prevent him from being a kid and playing in the dirt, are you not going to allow him to swim???? Just some things to think about.

 

[anonymous]

Back to the topic at hand. There's a difference between casual contact -- walking past someone in a hallway, vs. eating, playing, participating in a close environment.

CFF foundation has recommendations regarding CFers in a school setting on their website. Distance requirements, trying to keep CFers separated by classroom... With HIPPA this makes things a bit more difficult. One would hope that most school officials would be aware which students have CF and be willing to keep kids in the same grade in different classrooms. Most school officials would be aware which students have CF --- most schools don't allow kids to dispense their own meds -- i.e., enzymes.

Liza

 

[sullihs]

<div class="FTQUOTE"><begin quote>Did you even read her post sullihs?????? Emily said, "Not saying this to be annoying or rude, or whatever other negative adjectives may be thrown at ME." She wasn't saying anything to anyone else or throwing any negative adjectives at anyone else, she was prefacing her post with a, please don't take this the wrong way, I mean well..... </end quote></div>

Yes I read it and I wasn't trying to be rude...just saying I did know all of those things and would still make my decision the same way. I don't think I owe anyone an apology.

<div class="FTQUOTE"><begin quote>Are you aware your son can pick up pseudo from playing in the grass, in the dirt, in the water???? It's more likely he picks it up from there than from playing in the gym where another CFer played earlier that day. Are you going to prevent him from sitting/walking in grass, prevent him from being a kid and playing in the dirt, are you not going to allow him to swim???? Just some things to think about. </end quote></div>

yes I know this as well and I do let my son play in the dirt and swim in the pool.

I wasn't trying to be critical.

Btw. I have been keeping you and your babies in my thoughts.

 

[Emily65Roses]

I believe Sullihs was making mention of not throwing negative adjectives out because I made mention of possibly receiving them. Like, yes this is what I mean, and yes it's meant well, so chill and don't insult me. Sullihs was just countering my statement by telling me that that's not a worry with her, because she doesn't insult.

I read it wrong too the first time. Had to reread it before I understood what she meant. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[julie]

Em, I re-read it a lot too, and I'm still reading it the same way as how I responded in my post.....


Sullihs, thank you for keeping our family in your thoughts. That is very kind of you and it is much appreciated.

Maybe I'm just going stirr crazy here at home laying on the couch (I can feel myself getting a bit irritated about nothing important at all, just little things, probably because I have nothing else to do, so I apologize in advance) so I'll try to be careful about my postings, but WHERE IS THE INITIAL poster??????? No questions about what we've all posted? No comments, no thank you for your feedback's. Just curious. There seems to be a lot of this lately (again, maybe I have too much time on my hands) where the initial poster never comes back.

I'm just wondering if anything any of us said was helpful. If you have further questions based on what people have posted......

 

[anonymous]

Thanks Emily, that is exactly what I meant...sorry I wasn't clear. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I do agree that asking the other cf family to contact you maybe a little over board. Maybe they think your the one being rude suggesting the kids be seperated, kinda like your attacking their child. Not trying to sound rude myself just putting out another thought.

Now I do think that your right, the longer you can go without culturing any bug is great. Now pseudo you can pick up anywhere, dirt water you name it...so thats one thing that sure you can try to avoid but its going to happen so dont blame the other cfers or clinic for it...cus come on especially toddlers can pick up things from anywhere (toddlers stick anything in their mouth). The other bugs like MSRA and cepcia I would be alot more conserned about. I would explain to the other parents that your not just looking out for your own child but theirs as well, that you dont want your child giving theirs anything either. I think asking them to move school is a bit over the top, because i mean you do share a clinic and no amount of cleaning and seperation is going to stop the fact that other cfers were in that room or in contact with the nurses/doctors...even if they wore gowns and masks what if the kids gave them hugs. Anyway I think the use of the normal regulations is fine....seperate class rooms...You dont have to ask the school which kid has cf just tell them hey look there is risk of cross contamination between cf patients so if there is another cfer in the same grade it would be in the childrens best interest to have them seperated. Then make your child carry hand sanitizer, its just good to do period. Of course teach them not to get to close to any one coughing or sneezing , not only will this work with any potential cfer but someone with a cold or something. No sharing of food and drinks. The usualy safety precautions that can be easy and in place for any situation.

Now there is a different concern if the other cfer or even your child cultures cepecia or mrsa....that can be alot harder on a cfer than pseudo. This is when its best to keep a good line of communication between the other parents. Try not to be mad at them now....maybe at a school function you will meet them. Just keep your cool and share your concerns, again try not to sound like your saying their child will get your child sick, stress the concern for both children.

I just want to throw something out there. Everyone is really concerned about cross contamination between cfers. Has anyone given thought to anyone with a low immune system, anyone thats on chemo, who has leukemia (sp?) or any illness or disorder that can cause a low immune system. They can carry the same bacteria and pass on to a cfer and vis versa. A child going through chemo could be in the same class as a cfer and they could pass things back and forth just as easily...maybe even easier to the chemo patient as they are really sick and immune systems really low (now I know most chemo patients dont go to school but some might just like cfers to try and be normal or do something when they feel good) That just doesnt mean there isnt a kid who has a low immune system sitting in the classroom. Sure maybe the chances of that are low....but we always thought the chances of another cfer in the same class was low too. Anyway just wanted to bring it up.

There is only so much you can do to protect your kid and I know you will do everything possible to do so.

 

[anonymous]

Well, it may just me but I think the last two posts Lovemygirl has posted have received more negative criticism than positive feedback. I realize that is not how it was intended on most people's part, some people are more blunt than others, just the way we are. Maybe I'm misreading but I"m wondering if that's where she's at. Lovemygirl, I certainly understand and respect your feelings. It is very difficult to find balance, in my opinion. I agree with others, I don't think the other family is necessarily trying to be rude, they may just be very private people. You do have good reason to be concerned. Like others suggested, I'd just stress hand washing to your dd, have her carry hand sanitizer with her. I do think it's important for the school to know who the girl is so they can place the girls in different classes. In my opinion, if the parents know and understand the risk of cross contamination, and know that your dd is in the same grade as their child and has CF, then, it is not the wisest or most responsible decision to withhold information from the school. BUT, that assumes the parents understand the risk of cross contamination. Personally, I don't think it's rude for them not to want to share information with you. I do, however, fully understand why you would like for them to. I'm sorry. I hope your family can come to some type of resolution.
Mel

 

[anonymous]

What about the other parents rights? I think that they have the right to enroll their child in their district in the normal fashion. If you are the one who has a problem with there being 2 kids with CF in the school, I think you need to add that problem, not them. You do have choices. You could enroll your child in a private school, homeschool like another poster suggested, or look to see if there is a different school in your district you can transfer her to. Yes, this would be a hassle, but it should be a hassle you have to deal with since you're the one with the problem. It doesn't make sense for another family to have to take action because of something you feel.

You need to focus on what is right for your child. Personally, I think this can probably be handled through working with your child so she develops good habits such as washing hands, using Purell, staying at a distance from those who are coughing or sneezing, etc.

I also think you may need to think about the effect of your lobbying for such stringent control by the teachers and staff. If you are so demanding and have such high expectations, the staff will likely lose some of their desire to help you and do what they can to make life easier. A fact of people is that when someone places unreasonable expectations on them, they not only tend to not meet those unreasonable expectations, but they also are likely to not even meet the basic expectations. If you like having the teacher who cares for your child and your family and takes the extra steps to wipe down her desk everyday with a wipe or provide some extra help when your daughter is out, you shouldn't place so many demands on them. In my experience, as a cfer, teachers will bend over backwards to do all that they can to make school safe and fun, but if they feel put out, they won't want to care about you.

For the sake of your sanity, I think life will be a lot easier if you can focus on what is in your power and pray for the serenity to not stress over the things that aren't. Keep in mind that this is your child's life and she will have to bear the effects of your actions. Don't make her have to fight for teachers to care about her and want to help just because they can't stand your insistent demands. I know it's hard to see your child as responsible for herself now, but she will be at some point, and for her health and her quality of life, you really need to help make sure she develops good attitudes towards those she interacts with. .

 

[anonymous]

lovemygirl,
If I read your post correctly, last year there were 2 families (including yours) that had cf kids. You knew who the other cf family was then and so you talked to the other mom and the two of you agreed to keep your kids in different schools and to facilitate that you moved Ashley to a different school. Since then a new family with a cf kid has moved into your town and there are now 3 families with cf kids in your town (including your Ashley). The parents of this new cf kid did not contact either you or the other cf parents before they enrolled their cf kid in school. They just enrolled him/her into the school they thought best (unfortunately for you the school that Ashley attends). So even with your best efforts there is Ashley now attends a school that has another CF kid attending as well. Right?

There seem to be 3 parts to your query. 1)Should CF families who have kids attending school be in contact with each other and make joint decisions about school enrollment based on their kids illnesses? 2) Should what school a kid attends be determined by the objective of having only one CF kid per school? 3) If there is more than one cf kid attending a given school, what should that school do to decrease the chance of cross contamination?

As far as #1 goes, I don't believe that one family with a sick kid has to talk to all the other families of sick kids when they are making decisions for their sick kid. A family's responsibility is to their own kid - making a good decision for that kid is hard enough without worrying about everybody else's kid. (And I say "sick" kid rather that cf kid, because as others have pointed out, it's not just cf kids who have to worry about contagious diseases more than other kids - kids with suppressed immune systems for any reason have to worry about this.)

As far as #2 goes, I think that where a kid attends school is a decision made by parents based on a multitude of things. It has to do with location, or curriculum, or teachers, or values, or student/teacher ratio or whatever as well as # of sick kids attending.

As far as #3 goes, I think that the separate classrooms and separate equipment (when small) is about as far as you can expect a school to go. Clean gym equipment is an issue for all of the kids in the school. Obviously they can't sterilize it between classes, but it is a darn good idea to wipe it down from time to time - and if one of those times is between usage by CF kids, well, so much the better, but I wouldn't make an enormous issue of it.

Even so, I hear and feel your frustration. Obviously having Ashley being the only cf kid at her school is obviously very important to you - important enough that you transfered her last year. I don't know how many schools there are in your area, but if there are 3 then I suppose you could transfer her yet again to the school without any cf kids (at least as far as you know). But transferring her could get old real soon and sooner or later you aren't going to be able to keep her in her own school. Typically by highschool all of the kids are together and even keeping them in separate classes gets tough (particulary if 2 cf kids want to take something like Russian 4 the same year or something). Eventually, Ashley will need to learn how to take care of herself in a world full of folks with contagious diseases and low immune systems.


So I'd suggest taking a deep breath and focusing on teaching Ashley the tricks of the trade for avoid infection now (without making her entirely paranoid). Keeping her distance from folks who are coughing or sneezing, washing her hands frequently, wiping down common surfaces before she uses them, etc. Of course, she's too little now to really be on top of all of this, but if you point out these things to her teacher then maybe her teacher can be the one on top of it in the school for now and the teacher can help Ashley take these steps.

Good luck to you. It's scarey I know. Part of you must just want to keep her in a bubble. But I bet that most of you wants her to have a wonderful school experience at the school that is the very best match for her.

Keeping you in my heart,
LisaV

 

[anonymous]

<div class="FTQUOTE"><begin quote>Maybe I'm just going stirr crazy here at home laying on the couch (I can feel myself getting a bit irritated about nothing important at all, just little things, probably because I have nothing else to do, so I apologize in advance) so I'll try to be careful about my postings, but WHERE IS THE INITIAL poster??????? No questions about what we've all posted? No comments, no thank you for your feedback's. Just curious. There seems to be a lot of this lately (again, maybe I have too much time on my hands) where the initial poster never comes back. </end quote></div>

Maybe she was just sick of all the drama...

 

[lovemygirl]

Wow. I am at work and remembered that I had posted this a few days ago. With school starting and all the turmoil surrounding it I have been too exhausted to go online after work. I have scanned the replies quickly and saw that someone was looking for a reply from the "original poster".
I can't wait to read all this in detail and see what some people think. Admittedly I am the overprotective parent and that will not change, but I was looking for some opinions form CFers, as I would imagine the patient thinks very differently than the patient.
I will read all this tonight and reply.

 

[lovemygirl]

Hi again,
Thanks everyone for your input. I knew when I originally posted that it would not all be positive and that is fine. What others think will not change how I feel but it does give a different perspective.
When I originally posted I was high on emotion. I am still very angry but thinking more clearly now. Perhaps there were things that I did not mention on the original posting. I heard about the child by accident and not through the school. The CF clinic had advised me weeks previous that there was a family moving to our area and was looking for a list of schools because they didn't want the kids together either. Then they decided that they would enroll their child in the same school as Ashley. My understanding is that they then tried to "hunt us down" to tell us to get out of the school, or their would be consequences. When they did not succeed in finding us they enrolled their child and told the school that we had been advised and were accepting to the situation. This was not true!
The principal has expressed to the family that I am aware of the situation and not ok with it but they have enrolled him anyways. Now they are refusing to let us know who the boy is so my daughter does not know who to stay clear of. I realize that she can pickup bacteria anywhere, and she cultured pseudo in the past. I am not oblivious to that.
As a parent I can respect their decision but they seem to be going out of their way to disrespect our family (there are too many details to write them all on this post). I am also going to do anything I can to protect her. I realize in day to day life their are risks and she has always lead a normal life, but I am not willing to throw her into a situation where I know there are risks. Everyone has a job to do and my job is to protect my daughter. So if I've been overprotective it is out of love for my only child. If I have been hysterical I will admit it. I will also let my daughter know who the boy is when it is discovered. I have asked her to be respectful of the other families decision to "protect" their son, but I will also protect mine. One of my concerns is also that Ashley will culture psedo again and then pass it to the boy. Or worse yet he may have B Cepacia (or other) and our family wouldn't know. If they won't tell me what he looks like then they certainly won't reveal any other info.
We are very open about her condition and have always taught her to be proud of herself, and CF is part of who she is. She knows the risks and takes precaution without being obsessive about it.
I am not out to harm this family. I am out to protect my own. I have always been respectful of how other families work and I expect the same in return.
Thanks for your opinions and thoughts.

 

[julie]

Lovemygirl,

I'm glad you came back to clairify and answer some questions, I know for me personally it helps me understand WHY you are so frustrated. And after reading your first few sentences about them trying to find you and then not being able to and lying to the school about it that you were ok with it, I can MUCH better understand your frustration. I just didn't understand thw whole picture and was making comments/giving advice based on what I read and trying not to read between the lines for that missing information.

I'm thinking out loud here... clearly the Dr's office can't tell you who they are as that woudl be a hippa violation and neither can the school.

Have you tried contacting your local CFF chapter? They might be able to give you some suggestions of how to handle this, what your rights are, maybe they can mediate the situation if they know the new family that has just moved to the area.

I can understand that you want to know who this other child is so that you can make sure your children and their child is aware, and takes the proper precautions, stays away... But at the same time, I can also understand the other parents wanting to keep things private. Maybe they've had a bad experience where they last lived?

My suggestion at this point would be to continue to educate your daughter about hand washing, give her some purrell to carry around, and contact the local CFF chapter and see if they can help you. If not, I know the main CFF line (it's a 1800 number) can possibly help too. They have a legal department and I guarantee you have delt with stuff like this before. I hope you get some resoultion, and I do thank you for coming back and giving a bit more information. It helped me understand more about why you are so upset.

 

[kybert]

sorry lovemygirl, but i dont believe that the other family are as evil as you are making them out to be. i think you have told a few porkies there. i still think you are being unreasonable and i really do hope that the boys identity NEVER EVER gets out because it seems like you will make life difficult for this poor child and everyone involved. i dont think there is anything more we can do/say to help you. you havent really listened to our advice and you have no intention to change your way of thinking. *shrug*

 

[Jane]

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

So if I've been overprotective it is out of love for my only child. If I have been hysterical I will admit it. I will also let my daughter know who the boy is when it is discovered. I have asked her to be respectful of the other families decision to "protect" their son, but I will also protect mine.
.</end quote></div>

I think all of us as parents have tended toward overprotective and hysterical from time to time, all for the good of course. Everyone's perspective is different. I agree with you about being open and upfront about your child's needs. As I said before, we go to a school where there are a lot of CF kids. Yes, it freaks me out! I do what I can to protect my kids, but its impossible to control every aspect.

I didn't go back and read every post again today, but has someone mentioned doing a 504? We included something in ours about not having the CF kids together, then its a legal obligation.

We also were fortunate because we knew most of the other parents and kids from GREAT STRIDES. There were a few families who chose to remain private. Here's what we did to encourage them to. We held a CF education workshop for all school staff (teachers, guidance, principals) where our clinic nurses gave a presentation about CF and precautions. We asked all the other parents to come give ideas too. All but one came.

 

[lovemygirl]

Kylie,
I have no reason to come on this forum and lie. I am relaying the information as it was presented to me. I have no intention of making their life difficult and my daughter has been spoken to and told that she needs to respect the wishes of the other family and not spread the information to her friends. If you read my postings before this would be quite clear. I have no intention of making life difficult for this child, and will not bring myself down to their level by disrespecting them.
There is nothing wrong with a parent who gives their child every tool they need to keep themselves safe. I have read all the postings and taken everything into consideration but there is no greater bond than that between a parent and child, and my job as her parent is to keep her safe and healthy. She does not live in a bubble...she goes to school, skating, soccer, dancing, guiding, gymnastics, sleepovers, parties etc.
Perhaps you are the one being narrow minded by not looking at it from my perspective, or not reading what was written in the postings. This forum should be used to support others and not to criticize and call each others liars.


Others,
Thank you for your support and for not juding how I feel. Unfortunately, I cannot control how I feel and thought I could come to this site for support. It is unfortunate that others judge so quickly.
What is a 504? I live in Canada and have never heard of this before. I am meeting with the CF team this week and will ask the question as well.

 

[anonymous]

A 504 plan is a written plan, signed by the school and the parents, granting certain accommodations to children with disabilities. Once signed, by US law, the school has to follow it. I'm not sure if Canada has something similiar? Hopefully, others from Canada will post. In the US, both public and private schools are covered by 504 plans. HTH.