School

[lovemygirl]

Last year when Ashley started kindergarten I discovered that we there were two CF families starting school at the same time. I called the other mom and we decided to keep the kids separate and my daughter changed schools.
A few weeks ago I heard that a new CF patient had moved to the area where I live and that this child is the same age as Ashley. I was told that it would be highly unlikely that the child would attend her school and left it at that. Now, 2 days before school, I discover that he is registered in the school and I am really ticked off. We had a meeting today and the school will offer them separate computers, and musical instruments and do their best to sterilize the gym equipment. I am still very concerned that there will be too much contact and I fear cross-contamination. I do not let her live in a bubble but as a parent want to do my best to keep her as healthy as possible.
I am ticked off at the other parents for not contatcing me as we did with the other family last year. They are very aware that there is another CF child in the school and do not seem to care. I find this very disrespectful and under handed and have no desire to meet this family anymore. What do we do about handrails, water fountains, and door knobs ?!?!?!?!?!?

 

[AuntKarla]

Excuse my ignorance..but why does it matter if there are 2 students
with CF in the same school.  The reason I am asking is because
I have a great niece and a nephew who happen to be brother and
sister who have CF.   They live together  as they only 14
months and 2 months old.  Is there special precautions my
niece will need to take while caring for her 2 babies.  <br>
<br>
Thanks for the help.<br>
<br>
Karla 

 

[kybert]

you want the school to sterlise EVERY single object in the school just because there is another cfer there? goodness. as long as the usual precautions are taken whats the big deal? id be more worried about what the non cf kids have! relax.

 

[Jane]

At one point we had 6 kids w/cf in my kids' school. We did a good job informing the administration, teachers and nurse about the risk of cross-contamination. The kids were never in classes or on the bus together. Two were at recess together, being in the same grade level, but the kids recognized each other and stayed clear. Some parents asked for special accomodations like air-purifiers but we didn't get to the point of asking for the school purify equipment. Its alsmost impossible to keep kids and their germs completely separate since they use the same hallways, cafeteria and bathrooms. We just made sure to have the kids purell A LOT!! Most parents were great and we had a phone chain to share ideas and updates.

The problems that we had was some of the other parents, like you mentioned. Some parents wanted to be SO private that they wouldn't tell us anything about their children. When Josh was in Jr. Hi, a girl w/cf moved in from another town. I asked the nurse if we could schedule a meeting with the parents to share ideas and so the kids could see each other (from a distance). The parents refused and never told the school anything about their child's medical needs. People are weird.

 

[kybert]

to be honest, if i had a child with cf i would keep things quite private too considering the way some insanely over protective parents act. the last thing youd want is to be hounded day in and day out by someone who demands to have every doorknob and handrail sanitised!

 

[Seana30]

I hope you do not take offense to this but, I feel you might be a little to overprotective.

I would not feel the need to stay in contact with the other CFers family. That is really an invasion of their privacy. I know here in Texas it is against the law for the school to even let us know their is another CFer in the school. It falls under the HIPPA laws.

There is no way you are going to be able to keep everything in that school sterilized. I would be more worried about what the other kids in the school were passing around than the other CFer. The other CFer has probably been taught better hygiene than the other kids.

As much as we parents of CFers want to shelter and protect our kids, there is no way we are going to be able to do that all of the time. I feel giving Courtney as "normal" of a lifestyle as we can is as important as her meds and treatments.

Wish you the best

Seana

 

[DEES4]

In my opinion you may be going a bit overboard but I completely understand that it comes out of fear for your childs well being. We as parents feel we must do everything we can to protect our children and keep them healthy as possible. I think as long as the normal precautions are taken and your child keeps her hands as clean as possible she should be fine....like another post said I would be just as concerned about what she could catch from the non cf kids!! This is exactly why I plan to homeschool....which some may say is going a bit overboard but I also homeschool my child that does not have cf.....but that is a whole different discussion!! I wish the best for you and your child!!!!
Carrie

 

[tammykrumrey]

We, too, have another CF student in the same school that my two girls w/CF attend. I called the other parent a few times to discuss letting the girls know who each other are so they do not get too close to one another. The mother never called me back after two attempts (I had even known the mom from working on a CFF committee together in prior years). And the next time I tried to get the number off our website, she had it removed<img src="i/expressions/face-icon-small-sad.gif" border="0"> I understand not wanting to let everyone know about CF, but I thought we should make sure that the girls knew who each other were.
So, therefore, I had to go to the teachers myself, and ask that they show Kayla and Hannah who the other girl is so that they know to stay a distance from her. My girls are used to staying away from other CF patients because of my nephew having CF and culturing everything... B. Cepacia being the one that I am extremely concerned about. So to them, no big deal.
I have not asked for anything special, just for the girls to be kept at least 6 feet away from each other, to be on the safe side. And my daughters have been instructed to NOT tell anyone that the other girl has CF. They know that it is her business to tell people, not theirs. They can only tell people about their own CF.

 

[Ratatosk]

I'm concerned when DS finally goes to school because I know there is a younger cfer who may end up going to the same elementary school he does. My primary concern is because one of the local clinics in our area, encourages cfers and their families interact. Doesn't seem to be concerned with cross contamination issues. They claim there's never been a patient at their clinic with cepacia, so therefore it shouldn't be a problem for cfers to interact. Some of the new parents of cfers have indicated their kids have staph and haven't been educated about cross contamination, something DS hasn't cultured, yet. DS has cultured psueudo, enterbacter cholae and HIB in the past -- I'd hate to have him pass his bugs onto someone else and vice versa.

I realize there are privacy issues, and I guess when the time comes for DS to go to school, we'd have to visit with staff and ask that DS not be put in the same classroom as the other cfer(s), maintain the 6' distance... Other than that, not much else we can really do.

On a side note, could've KILLED my MIL last year. She was telling one of her former nursing students at the CF walk about the WONDERFUL preschool/daycare DS goes to and suggested she take her newborn there. I had to take her aside ask her what the HECK she was thinking. Forunately this person lives in another community nearby and it's highly doubtful she'd drive the 20 extra miles out of her way.

 

[anonymous]

Ugh! I just wanted to say that you aren't the only one who would be upset by that. It just seems like there are enough "threats" out there to our CFers so having another CFer so nearby just adds to that. I don't know if some parents are just less carerful than others or if the doctors just put more emphasis on this to parents nowdays but I am suprised by the feelings posted here so far. When my daughter was dx 2 years ago we were told to keep her as far away as possible (3 feet minimum) and her dr was very emphatic about that...needless to say that is why I would be upset... I hope you can figure something out with the school.

 

[Emily65Roses]

What you do with your child as far as "protecting" goes is your business, but I have to agree that it's more than I'd do. You can only protect the child from so much. How do you know, when you're in a busy place, that the child over there in that crowd doesn't have CF? You don't.

On top of that, I'd be willing to get that they're not being rude, in not caring. They're probably just far more relaxed. I doubt they're thinking "Oh, let's ignore those CF parents to drive them nuts and offend them ten ways to Sunday *evil laughter*" They probably just don't see the point in going overboard. I grew up around CFers, and I still see them if I feel so inclined. If my parents found out there was another CF child in my school system, they wouldn't call either. Not out disrespect, but because... they don't care.

You can only prevent so much, no point in bending over backwards and losing your mind over ONE other CF child in an entire school system. There are, granted, only 30,000 of us in the US, but you can't expect your child to NEVER be exposed to another CFer, whether you know it or not. Like I said, in a crowd, how can you know? *shrug*

 

[anonymous]

I don't think you are being overprotective. My clinic has preached to us about keeping our child away from others with CF. Our clinic has separate visit days for pseud and non-pseud patients. They even give you a magnet to keep on your fridge to make sure you know the proper days in case someone makes your appointment on the wrong day. I would not be comfortable with my child being in the same grade with another child with CF...I am sorry, but his health is too important to me (he does not currently culture anything).

 

[Emily65Roses]

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.

 

[Emily65Roses]

Basically, the most important point for me is:
Do what you want with your kid. That's your kid, it's your business. Though be advised, a lot of us would tell you to chill a bit.

<b>But don't assume the parents of that other child are being rude</b>. I guarantee they don't think they are.

 

[julie]

No offense but if I had a child with CF, I wouldn't be publicizing the information either, maybe this family wants to keep things private and normal for their child. <b>And if the school disclosed this information to you SHAME ON THEM. That is a major HIPPA violation and I hope the other family sues them!</b> They have no obligation to discuss anything with you, although it's clear you think they do. I don't see them as being rude, they probably just have a more relaxed outlook in CF or want to keep things as normal as possible. There is nothing wrong with that. I think you are the one who is bing a little unreasonable.

As far as cleaning things, are you kidding me? I agree with kybert, I'd be worried about what the non CF kids have. In my experience, the CFers are taught at a young age about germs and the importance of keeping sanitary and clean, washing hands, covering their nose and mouth when they sneeze....

Your child WILL culture PA someday, your child WILL culture Staph someday, your child may culture MRSA and other CF bugs someday. It's inevitable, it WILL happen.

You may be having lunch one day and guess what, your SERVER might have CF. The hostess might have CF, the family sitting next to you might have a child or adult with CF. If you let things like this get to you, you are going to spend the rest of your life continually stressed out and trying to fight issues like this.

Let it go!

 

[tammykrumrey]

I, too, would be upset if a school told someone about my children having CF without asking me first. I do not hide it at all, but it is still my business.

The only reason why I know that there is another CF child in our school is because I have worked with her parents on the Great Strides Committee and saw her name on the school directory.

And I really can't complain because my girls go to a private school and I have made the choice to send them there. They are in 3rd grade and 1st grade. The other CF child is in kindergarten. We all have a right to go there if we chose to do so and I think it is reasonable to ask that the CF kids know who to stay away from in this situation. I feel like that is not too much to ask, just to keep the lungs clearer from certain bugs just a bit longer<img src="i/expressions/face-icon-small-smile.gif" border="0"> I know that it is going to happen at some time, but so far my one only cultures MRSA, and the other nothing.

Even though the other parent didn't call me back, I am ok with it. That is the way they want to deal with it, and that is ok. I can only teach my daughters about good hand washing and not touching everything under the sun. They are my responsibility. Not that of the other family.

 

[Ratatosk]

We realize that DS can't live in a bubble. Mainly my concerns, frustations stem from the local cf clinic and the encouraging of CFers and families to interact. And my fear is that this will continue on in every day live, in a school, social setting. When DS was first diagnosed at an accreddited cf facility, one of our doctors explained about cross contamination, why they don't have CF camps anymore and just have support groups for the parents, not the kids. So when we started going to the local clinic...

On clinic days, families are given a choice as to whether they're in a private room or sit out in the waiting room and go meet the doctors and health care providers in individual rooms -- rooms everybody else on that day goes into. When we first questioned their protocol, one of the doctors got very defensive "you send your child to preschool, so why do you care". Because my child's preschool class is made up of 6-7 three year olds. Yes, germy toddlers, but not 15-20 cfers from ages 0-20. Their reasoning for allowing the close quarters is "because none of our patients culture cepacia". Yet several culture other bugs.

 

[anonymous]

Yeah I gotta say that this seems overprotective. And totally illegal from the school's side if they told you.

When I was growing up we didn't even tell the school I had CF, so does that make my parents horrible because there might have been another CFer around? I don't think so, they just wanted to keep it private. You seem to be thinking the worst of the other family. Maybe they have taught their child everything they need to do to be healthy.

Also, if you go even further then wouldn't it be that no one with CF should have a job because what if they were with other CFers? I don't tell my coworkers and I have CF so I go even get a kid with it. Things will happen no matter what so I would just go with it and not worry so much.

And also, trust me...worry about the other kids. One of my fifthgraders picked his nose today and ate it! so so gross

Sue 24w/CF

 

[anonymous]

I can't imagine what it must be list to have a child with CF because I am that child. Many of us adults grew up with parents that did not have much of the information that most parents now possess. This is a blessing and a curse. Blessing for obvious reasons. You are educated and have a heightened awareness for your children. Curse be/c it gives you more concern and additional worry. Please do not assume the worst of the other family. Maybe their child was just dx a year ago and they are still dealing with the information. I am almost insulted by your assumptions of the other family and I don't even know them. We never know someone else's side of the story until we speak with them. Unfortunately, Pseudomonas and other bugs are not just in people. It is in soil, water, and many other places whether or not a CF patient is around. Pseudo is ubiquitous. I did not culture Pseudo until I was 20. I am now 28. I have two other siblings with CF. We see each other regularly. We hang out, hug each other, cook for each other, visit each other's houses. One of my brothers (age 30) also has Pseudo and MRSA. My other brother, the oldest at 33 only has Meth Sens. Staph. You are doing the best for child as you are able, but at some point, it is not in your hands and that is probably the most frustrating for a parent to a child with CF, or the patient themself. It is life. - - point

 

[CFHockeyMom]

We're facing a similar situation this year. In our school district all the schools join into one beginning in 5th grade. I'm aware of another CF family whose DD has CF and she'll also be starting 5th grade with Sean. This family may be aware of me as we have a few mutual acquaintances but I have not spoken with them. I'm also aware that this particular family handles CF a little differently than we do and I'm fairly certain they are not advertising to the school that their DD has CF. That said, I spoke with the principal of the school and let him know that I was aware of another 5th grade CFer. I did not, however, give him her name. I told him that for Sean's and the other CFer's protection they must not be in the same class, have gym, art, band, lunch, etc. together. He seemed agreeable but again, I don't think this family has let the school know about their DD's CF. Fortunately, for us (me and you) we know the names of the other CFer's in school and we can advise our children to stay clear. That's really about all you can do. Asking the school to sanitize everything is not a "reasonable accomodation" under the ADA and it does seem like they are working with you. It sounds like, you have multiple schools in your district to choose from. Obviously the other family has chosen not to go there but you could.