What wold you do if you found out that there was another cfer on your childs school, in the same hall and they had cepacia? This has happened to me and it has turned into a fight with the school.I found out and asked the school nurse to make sure they didn't sit next to each other in assemblies, store meds in different drawers and could the computers be cleaned after my childs class and the other childs class. I know they can't clean the playground, walls bathrooms and water fountains. I was told I needed something from my doctor saying this needed to be done that it was a burden to them to have to do this.I never said I wanted the other child to be pointed out and I wanted to protect that child along with mine. When I talked to the nurse at the doctors office she said she didn't think they could do anything because I was discrimminating aganist the other child. Do I have a right to ask this or am I being a crazy person?
What would you do?
- Thread starter cgerhardt
- Start date
Oh wow, that would worry me too! I'm not sure what I would do, but that is very serious. I think I would first consult with your childs dr and get their suggestions and pick their brains for every bit of information that they could give you and get a note from the dr explaining all about it and what the school could maybe do to help with the delicate situation. I would also not want to hurt the other childs feelings or even have them know that it is happening, as it is not their fault, and obviously my heart would go out to them, but in the same it is our responsibility as parents to protect our children and keep them as healthy as possible. I don't think that you are being a crazy person, you are a scared concerned parent who loves their child and is trying to protect them. Sounds like you will be fighting this for a few years unless one of yall move. Not a good situation for either of them. 
Hope you can find an answer that helps you both!!
Hope you can find an answer that helps you both!!
T
TonyaH
Guest
The fact that this other student cultures cepacia is a non-issue in my opinion. Every CF patient should be aware of other CFers around them and expect that they are culturing different things that could be passed between one another. Bathrooms, computer lab, etc. are places that would concern me about cross-infection as wel and I would think the school would be more than willing to help by assigning the children different computers in the lab, different sinks and bathroom stalls in the bathroom, etc. This can all be done very discreetly. You should contact your clinic and get your social worker involved, then set up a 504 plan. Is there any chance this other child may be followed at the same clinic? Are they aware of your family? Perhaps if you could go in together they will realize that this is not a matter of discrimination. Nobody is talking about switching schools..just taking a few extra precautions. But I would definitely not lead with the cepacia issue. Who knows from appointment to appointment what any of our kids have picked up!....cepacia is not the scary word it used to be, and your child could be culturing something right now that the other child doesn't want to come in contact with, either!
Thank you. Tonya that is exactly what I told the school I wanted to protect all parties invovled . Not that you wouls ever know but I would feel awful if one of my kids got the other child sick. We all do go to the same clinic, I found all of this out through a friend who also goes to the clinic. I am not sure that I can do anything and I don not want the other child to know what is going on. I would never want to hurt that person or thier family.
The "3 foot rule" is sufficent between CF patients. Cepacia is a different issue. This has the ability to be carried and transfered by other people. Other classmates or teachers. That is why your CF Doctors, Nurses, etc gown up.
If I were you, I would have my child transfered to another school.
Bill
If I were you, I would have my child transfered to another school.
Bill
I actually brought up the subject to the disability services at my college. The lady who helped me was quite snooty and did not understand my point. I was not asking who the person was who had CF. I just wanted to be sure I did not come into contact with the person or had classes with them. Her reponse to that was "Well you could come in contact with a person with CF out in public like at a supermarket so really not much we can do here." Just really rude my dad knew what I was trying to say and piped in just that I was taught to keep distance from other people with CF to limit the transfer of bacteria. Really the student disability services at my college are horrible at their job. They left me on my own pretty much when I was hospitalized in April the entire month. Pretty much my accomodations did not mean nothing to one of my teachers as he was going to drop me for missing two weeks of class and they were too spineless to enforce them. It was a bad situation overall. I do not think that schools grasp the concept of keeping us sperate from each other and really thats quite sad. You are not discriminating against the other child. Really you are looking out for your kid and theirs as well. I would try to get in contact with the parents of the other kid and jointly go to the school with your alls requests and concerns. The major factor is that they think you are singling out the other person's kid and I do not see you doing that. I hope what I have said helps and I also wish you best in accomplishing your goals in what is an inevitable fight.
Thank you everyone. You have made me feel better, I was begining to feel crazy. I only want to help everyone in a bad situation. I was told the same thing about the water fountains that people have other bacteria that I don't know about. It makes me so angery that people don't care. I am getting as much info. as I can so I have a chance to win this fight, and trying not to go on emotion. i will keep you updated.
Aboveallislove
Super Moderator
I was always told water fountains are a big no no all together. Several mention having in the 503 or whatever plan that they have a bottle of water or gate roared at desk. And no you aren't crazy. No we can't control everywhere but just like at clinic where we know there is a risk you do everything to limit exposure. I'm more on the printer side off this but I'm sure you will figure it out for what is best. Hugs.
Our CF center holds an info session for new CF families, and one parent who spoke to us had this issue one year with their daughter. They asked the school to arrange a meeting for the parents of both kids, and they worked out a plan for using different bathrooms and other contact avoidance that everyone could agree to.
We are in the Boston metro area, so our center serves a very large population area and many towns. When I heard that parent talking about their experience, I thought "its a big world and a small CF population...surely this won't be a problem for us". At the break, I met the nice parents sitting right beside us, who have a daughter about our son's age. I was suprised to learn they live right across town from us!
My two boys are in daycare still, so I haven't had to deal with this yet in a public school setting. My approach with daycare was to explain to the directors why avoidance is important and that a few simple precautions can go a long way to keeping the CFers healthy. I asked them to let any new families who want to enroll a CFer know that there were already two kids here with CF, and I asked them to offer a meeting with me and the parents to work out a plan that we were all comfortable with.
I know this only works if the other family is up front and wants to participate, but I can't imagine them not wanting to protect their children as much as I do mine. I don't think the burden to the school is unrealistic either...but they also have to be willing to step out of the norm if it serves the best interest of their students.
I know it sounds easier than it really is, but I would do whatever I could to turn a "fight" into an opportunity for the school to protect their students with a few simple accomodations. Good luck!
We are in the Boston metro area, so our center serves a very large population area and many towns. When I heard that parent talking about their experience, I thought "its a big world and a small CF population...surely this won't be a problem for us". At the break, I met the nice parents sitting right beside us, who have a daughter about our son's age. I was suprised to learn they live right across town from us!
My two boys are in daycare still, so I haven't had to deal with this yet in a public school setting. My approach with daycare was to explain to the directors why avoidance is important and that a few simple precautions can go a long way to keeping the CFers healthy. I asked them to let any new families who want to enroll a CFer know that there were already two kids here with CF, and I asked them to offer a meeting with me and the parents to work out a plan that we were all comfortable with.
I know this only works if the other family is up front and wants to participate, but I can't imagine them not wanting to protect their children as much as I do mine. I don't think the burden to the school is unrealistic either...but they also have to be willing to step out of the norm if it serves the best interest of their students.
I know it sounds easier than it really is, but I would do whatever I could to turn a "fight" into an opportunity for the school to protect their students with a few simple accomodations. Good luck!