Cfers going to the same school

[Ratatosk]

Was working on the Great Strides walk and noticed that with one of the newest teams, the CFer was a newborn who lives in a newer housing development about a mile or so south of us, so at some point DS and he will most likely be attending the same elementary school. DS is almost 3 and this child was born about 5 months ago, but I'm a worrier and just wonder what other parents do when their children go to school. Especially with HIPPA (Privacy) guidelines.

Liza

 

[lovemygirl]

We live in an area where there is another CF girl that is the same age as Ashley adn they were both starting kindergarten in the Fall. The CF Dr. said it was ok to be in the same school as long as it was not the same class. I called the other mom and we agreed that they should be in separate schools so I switched my daughter (easier considering many other factors). Although the Dr was ok with them being in the same school we were worried that they may run in the same social circles or be involved in the same school activities and we didn't want that.

It still causes problems elsewhere. They are in the same dance school but different classes at different times. They both play soccer so I decided to coach to ensure that they are on different soccer teams and try to keep them on the field at different times.

You may want to make it known to the other family that you have a CF child and then discuss it with them because they will likely have the same concerns as you do.

 

[kybert]

they are going to be in different years at school so there is no problem.

 

[Kaitsmom]

Kait attends school with another child with CF. They were in the same class in 2nd grade, although i really do not recommend this. This year they were suppossed to be in the same class but i went to the principal and requested that she move Kait because i did not want either girl getting the other sick so my daughter was moved to another classroom. They of course do see each other at school and are very fond of each other, this really scares me because i do not want to break my daughters heart, we have discussed why they can't really hang out with one another but my daughter still loves being around her friend.

We went to a school program for my youngest daughter and the girls went to the bathroom well wouldn't ya know it ...here comes my daughter and the other little girl with CF arm in arm, skipping together like everything was just peachy.. now of course i was ready to have a heart attack but had my camera in hand and snapped a real quick picture. When we went to clinic... one of the first things i did was show Kaits doc which of course knows both girls... his response was "that doesn't look like 3' to me" well he did assure me that everything is OK and not to worry to much at this point but did try to explain to my daughter why it is important that they not be real close to one another.

It is very sad because at first i thought well this wont be so bad... both girls will have someone that they can relate to, after learning more and more about Cf i have to disagree. We need to protect our children and i believe protect them all that we can without actually sheltering them from EVERYTHING

I would just simply request that they not be in the same classroom setting.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Jason went to the same school as another person with cf. They were in differnt grades - 3 years apart. The rule was that they were assigned different bathroom facilities and one went to the nurses office and the nurse came to the other child's classroom. This alleviated them running into each other during medication time. It worked out well. Jason is 8 and is just now interested in knowing and seeing others with cf. He doesn't like - but does understand why they shouldn't physically get too close. However - no harm in being able to communicate with each other and see each other outside and at a distance. Sometimes you just don't know and cannot help it. We were at a playground the other day and a little girl got stung by a bee. I went to get my first aid kit and sure enough - she had cf too. Hope this helps - take care!
Jo Ann - mom of Jason w/ cf

 

[anonymous]

I realize they're different ages, but there still maybe activities they could be involved in together despite the 2 year difference. Probably a moot point, I'm just such a worrier. There are only 55 CFers in our state, so I was hoping the odds would be in our favor.

The other thing I worry about is they go to the local CF clinic where they don't see a problem with CFers socializing, in fact they encourage it. Eeek!

Liza aka ratatosk

 

[anonymous]

I can understand, that you want to be careful, but: What if you have two children with cf or mother and child with cf or another near relative with cf?

Uli,43,Germany,cf/cfrd

 

[anonymous]

to all the parents who say they switched their kids schools and classes and wont let them hang out, you dont know what kind of damage you are doing.
i am sorry to hear this because i know how difficult it is to be a child feeling completely alone. you might think you're looking out for your child, but you have to remember that life isn't all about beating a number (aka living past 35), you have to enjoy your life while you are at it and personally i cannot enjoy my life without seeing people with cf. They are the only people in the world that can understand and i think it's tragic what you are doing to your children.

sincerely
maggie
18w/cf
(and fortunate as hell that i am very close to many cfers past and present)

 

[anonymous]

I would have to agree, as a mom with 2 children with cf you can't expect to keep them apart. Practice good hygene, don't do treatments in the same room and teach them not to cough on each other. It is hard enough living with cf, they should not have to do it alone.

 

[lovemygirl]

I just wanted to reply. I did change Ashley's school because the kids were in the same grade. They do dance together and play soccer together but in different classes / teams.
I have made a penpal over the years with 2 CF kids. One of these girls is the same age and the girls are going to be penpals as well. I agree that it is important to have someone that understands what she is going through but we all approach that with different eyes. Perhaps as a parent we see it different than you as a person with CF.

 

[SeriGurl]

I'm just curious, why is it a big deal if two kids with CF are around each other? Is it an issue of getting each other sick or something?

 

[3timesthefun]

We had a similar situation in a preschool setting. There is another child that lives in our city with CF. We did different days. She t/th and us m/w/f. She sent her child to a private school for elementary school, so it is no longer an issue. I think that no matter what are children are going to be exposed to other CF kids, probably without us even knowing. We need to instill good hygeine and hand washing at a young age.
If they were the same age, I don't think I would want them in the same class, but it doesn't sound like that is the case. They might not even have lunch or recess together, at our school each grade goes at a different time.

 

[shauna]

If they're not going to be in the same year at school I can't really see this being a problem. You can't keep worrying about it because that will probably do more harm than good. My sister is 2 years younger than me, with cf, so we were always at the same school (not to mention house...) as well as another girl who was in my sister's year with cf. there was never a problem.

i have pseudomonas (sp?) and have had for about 20 years and my sister still hasnt caught it so i think if you take care, but dont be paranoid about it, everything will be fine.

 

[Emily65Roses]

Pen pals are good, but please don't anyone talk themselves into thinking it's the same thing. It's not.

I'm just glad I was brought up before anyone really knew about the whole issue. I was able to play with all sorts of CF kids all the time when I was growing up. No one knew any "better" and no one cared. *shrug*

 

[anonymous]

Maggie
I do agree with you that life is not about numbers but as a parent of a child with CF, i do not want to bury my child at an early age...there are some things that we can not control...like when any of us are going to die but that doesn't mean that we neglect the things that we can do to stay healthy longer and therefore hopefully life longer lives. My daughter wants to have babies and wants to be a nurse or teacher, she is only 10 years old and i pray that she will be able to fulfill her dreams in life. She is aware that she is not the only one in the world that has CF and that there are people in this world that have other illnesses and diseases, one of my best friends daugher is slightly autistic and Kait knows that her friend is different than she is but she knows that noone in this world is perfect and she has alot of compassion for others with different disabilties as well.

Maybe it is different for a parent w/oCF than for their child with CF but i do know as a parent that NO parent wants to live longer than their children, and as parents we have an instict to protect our children. For example...when my daughter is a teenager(not to long from now) i do not want her to use drugs because i know that they are harmful and addictive but i know that when i was a teen i did do some things that i thought to be recreational (thank God i grew up) and i am sure the time will come when my children will want to experiment but that doesn't mean that i want them to or will condone it...just so that they can fit in with the "normal kids" or just because everyone is doing it. I do not want my children w/o CF doing things just to fit in with the crowd.

I think that it is great that Kait has a friend with CF (not that CF is good) but she does know that she is not the only one that has to go to the nurse for meds or do CPT and go to the dr. appt all of the time and come home with a PICC , I did not take her out of her school but i do find it necessary to teach her that if she wants to fulfill her dreams in life than she must do everything to try and keep herself healthy, not to mention if a cure does come her way she will be accepted or if the time comes when she needs a lung transplant than she will not be denied because of some horrible bacteria.

 

[anonymous]

That was me Kaitsmom... Sorry

I did not write this to offend anyone but wanted to state my reasonings for why i did change classrooms and why i feel the way i do. Just my opinion !

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[niki]

Hi Kaits Mom, I am relatively new to the sight but not to cf, so forgive me for intruding. You have a complete right to feel the way you do about the subject. If you don't mind me asking,how old is Kait and is she your only child? I have two children with cf. 10 years and 22 months. My 10 year old has also had a brain tumor, stroke and a number of other brain issues. Over the past 10 years I have spent every waking minute trying to protect him from everything that could possible make him sick. When he was diagnosed in 1996, I prayed everyday that by his 10th birthday we would all have the miracle that we were all looking for. Well, it didn't happen. So we still wait. One hot day in July last year, it finally hit me that the only thing I was protecting him from was life. There are just somethings, as parents, we just do not have control over. He is only 10, but has said that he would much rather have 20 wonderful years than 40 bad ones. Yes, this breaks my heart and I have been with other parents as they have lost their child to cf, but every patient I have ever talked with have said the same thing, "give me a full life for the years that I do have". There will come a time as parents, that we will not be able to make choices for them, and they will choose there own path, and all we can do is hope that we instill in them at a young age the courage to fight.

 

[anonymous]

The flip side to this issue is not just protecting our child from other cf people and their bacteria's that they may carry but also from protecting other cf people from our child's possible bacteria too. We never really know what germs we carry till after we have had them a while and after they show up in our cultures which takes weeks to get the results on. Certainly we must be prudent for everyones sake and realtistic too. Obviously if we live in a household where there is more than one person with cf then contact is pretty much unavoidable but that doesn't mean we should then throw common sense out of the window. When separation is possible such as in classrooms, afterschool activites, etc...then we should go that route for everyone's sake. Those of us with cf can lead full productive lives even within the limits of good common sense where germs are concerned.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaitsmom</b></i>
not to mention if a cure does come her way she will be accepted or if the time comes when she needs a lung transplant than she will not be denied because of some horrible bacteria.</end quote></div>

Not saying any nasty bacteria is a good idea, but do keep in mind that there's at least one hospital in the US that will do a tx on a CFer with cepacia. (Mind you, I say this because when people say "horrible bacteria" my first instinct is always that they're referring to cepacia.)