two CFer's in the same school

[anonymous]

Hi,
There were TWO other students in my school from the time I was 11 until I graduated high school. I had classes with them and one was a pal. I met another guy in college and we had classes to and became great buddies. When I was young, about 9 and 10, my CF clinic took ALL their patients to a YMCA camp for a few days in the summer (this was before the pseudomonous scare). Contact with another CFer is NOT a death sentence and can be a wonderful thing.

I'm not telling you that you shouldn't listen to your doc, but I know that when you child is young and they have something as scary and heavy as CF can be, it's easy to go to extremes. There is nothing you can do to keep your daughter from picking up bugs, virusis, bacteria and some infections. She is going to grow up and cannot live in a bubble. Teaching her good hygiene, and getting her in the habit of doing her treatments and taking her meds is the best you can do. Don't send her to school if the class is full of sick kids, and keep her home if she's sick. Tell her to cover her mouth when she coughs and wash her hands.

If you feel uncomfortable with her in that situation, do what makes you happy.
Debbie
24 w/ CF
College graduate and friends with other CFers

 

[Emily65Roses]

Okay, so here comes my two cents. Everyone ready? Heh.

One, you sound VERY much like you've got a serious superiority complex. Just because this other child is sicker doesn't make you better parents, or your child a better person. CF depends highly and mostly on which cards you're dealt, the end. I can only hope you never speak to the other CF child, or your own for that matter, about that child in that manner. You could do some serious damage. Damage that is entirely uncalled for.

Two, who are you to judge her parents? If it is her boyfriend, who cares? The boyfriend could be very involved for all you know. And calling him stupid isn't your place, even if he doesn't understand the meds well. You thought cepacia was viral. Guess what? It's bacterial. Does that make you stupid? If I'm looking at it from your perspective, it certainly does.

Three, I agree with the last few posts. Age 5 is not too young to understand the severity of one's condition, or things that need to be done. Is it potentially as responsible an age as, say, 16? Of course not. But that doesn't mean your kid (or the other CFer) doesn't get it. This goes for any child, but especially CFers. In my experience, I have noticed that most CFers understand complicated heavy things far before other kids their age would. Don't underestimate your child.

Four, I agree with whoever else said this as well. This part is controversial and the decision made about it is different from person to person... but... Contact with another CFer is not necessarily as evil as you're making it out to be. I grew up going to walks, and bike tours, and Xmas parties with other CFers. I had CF friends, Bobby, Michael, Rebecca, Amy, Justin, etc etc etc. It helps a LOT to know that you're not alone with CF. That there are other kids out there that cough as loud and as often, other kids that always taste like salt, other kids that stink up a bathroom like you wouldn't believe, and other kids that expect to die before their time (this part is of course referring more to kids born around when I was, because as years go by, the life expectancy gets higher and higher). It makes a world of difference. I stopped going to CF functions maybe when I was about 10. We just got lazy and stopped going. But a few years ago, I stumbled onto this forum, and it's made a huge impact. I love talking to other CFers again. It's brought out a pride in me for having CF. For being a tough chick and dealing with it like I do. For continuing even when everything pisses me off. And for knowing there are others that are strong through the same exact things!!

*Not two weeks ago, I drove from CT to NJ to visit Coll from the forum here (NoDayButToday). It was fantastic. We spent the whole afternoon together, we went into NYC. We had lunch, had fun, we went to Times Square (my first time!). We swapped hospital horror stories and laughed about it. I was in public (Penn Station), and for once wasn't so conscious of my coughing, wondering what people were thinking, or if they were staring. I just sort of thought... "Hah, well now Coll's doing it too, so strangers that stare can ____ off." Again, as I said, this choice is different for every family. But don't dismiss the idea as entirely unhelpful and not beneficial in any way. It most certainly is. You just have to weigh the risks against the benefits.

 

[arabeth]

I have been following this post with interest but not responding as I didn't have anything positive to add but upon reading the original poster's latest response I am just in awe... It seems to me that you feel that you deserve an award or something for not smoking or drinking during your pregnancy and for having such a healthy child. Please keep in mind that the majority of CF kids today are pretty healthy at age 5. And those who are sick are not sick because of bad parenting (in most cases anyway). I have a freind with two daughters with CF. She takes care of both kids (very well I might add). Her oldest is very healthy but her younger daughter, age 9, has been near death a couple of times. She spends most of her time in the hospital and her lung fuction was recently in the 20% range. She is unable to attend school and has to be home schooled. She is on oxygen most of the time as well. Yet her sister is perfectly healthy, cheerleading, etc. Can you blame the mother for the younger child being so sick in this situation too?

Are you a good mother? Probably so, but that certainly does not make you better than the rest of us (or better than the mother of the child you are referring to). I genuinly fear that if you are taking all the credit for your child's health, you are going to become suicidal when reality hits and your daughter gets sick. If her being healthy is all because of you, is it going to be your fault when she gets ill? I really think you should reconsider your position. You deserve a pat on the back for taking care of your child, no doubt about it. What you don't deserve is the right to judge people who have been dealt a different deck of cards than yourself. What if you found out that this child's mother has CF herself and is unable to attend these meetings because she is ill herself? Would you change your opinion then? You just do not know and shouldn't judge a situation like that.

One more thing I have to add. If I read your response correctly you said that you did not put your child in the school in her area because you "did your homework" and chose a different school. That's fine if the school is okay with it, however, it is completely wrong for them to refuse services to a child who is in their district in order to serve one who is not. If anything your child should be moved back to the school she was supposed to go to in the first place. I have 5 kids, 2 of whom have CF and we have moved twice in the last 5 years. Once from Kentucky to Minnesota, than from Minnesota to Texas, so these were big moves, not just around the block. I certainly have not seen anything that would make me believe these moves were harmful to my children, with or without CF. And in the end you must realize that if YOU have a problem, it's YOUR responsibility to fix that problem, not anyone elses. It doesn't appear that anyone else in this situation has a problem so don't expect them to fix it for you. Along with all the credit you are taking for your daughter's health comes the responsibility for keeping her that way. That's YOUR responsibility, not the schools.

 

[EmilysMom]

OK...my turn to jump in! While I understand your concern for your daughter, you have to have some compassion for the other family as well. When Emily started kindergarten, I wanted to send a huge list of Do's and Don'ts to the school nurse with her. I didn't because I refused to turn into a "hovering" mother. I simply sent in the most important ones. I didn't know whether she was the only CF child in our public school system or not (that's not a question you can legally ask). They could only tell me that she was "unique" which I took as "she was the only CF child". You can't deny this other little girl her education because her parents seem to be uninvolved or uncaring. There may be extenuating circumstances that you know nothing about. I agree with Julie...you should politely ask for a meeting with the school system and the other CF family to set some borders and rules for school contact. However, I would try to tone down my attitude before that meeting. Try to remember that the other family probably cares as much about their child as you do about yours (even though you may think they don't!)
I have to believe that the other family wants what is best for their child as you do yours and that the school system will be there to back both families. Ask about a "504" Other Health Issues Plan for your child. (I work for a public school system and know that they are going to do what's best and legally correct)

 

[anonymous]

Hi,

It's Kathy (Colleen's mom). Like the majority of the people who have responded, I must advise you to please try to relax and not to worry so much. Using common sense (covering one's mouth when coughing, etc) is probably all the situation warrants. And as Emily (and others) eloquently pointed out, the support that CFers can give each other and the bond CFers can feel with one another - is invaluable in terms of emotional health (as those of us who have dealt with this disease on a longer term basis well know).

It will all be okay, Kathy

 

[anonymous]

Hi everyone, it's me the original poster!!!!! I see your backs are up, let me help again in clerifying a few things. First, I'm very bad at typing and I verbally can explain my points in better fashion, I'm sure, so bare with me. 1) I've stated over and over again, to please, feel free to comment or critisize and that it helps me to talk things out and hear others opinions. (so don't worry I don't take offense to ANY thing you say.)

2) I only stated that I didn't smoke and such in my pregnancy, not for a hero biscuit, but as just saying, because I didn't know my daughter had CF, I could have made things worse. So I am glad I didn't.

3) YES, I have been very diligent with my daughters health, only because I have the time to invest in her health.

4) I think we all misunderstood that I don't care for the other child. I do, and have expressed my opinion based on both childrens best interest. MY daughter might be cultering something not good for her, and visa versa. So it's not just about mine.

5) Now the biggest miss communication, my daughter knows all too well about living with CF. She has been swallowing enzymes just shy of her second b-day without fluids, she take her meds without complaining, she washes her nose out 5times a day, she covers her mouth when she coughs and washes her hands frequently ect...... I think you miss understood. What I was trying to say is that, she is still little and it is hard to control how much little children have contact with each other I meen TOUCHing, COUGHing, and respecting the other persons space.

6) As a young adult, 10,14, 18 ect..yrs old, I only hope she has best buds that have CF, I only meant that at that mature age, although you can culture infections and such from each other, you have the capability to aprreciate ones space and cup sharing and or food sharing and such. It wasn't meant as an insult, just maturity comes with age and understanding of ones illness as well. Is all I meant.

7) As for the other family, as I had stated before, I know them and have met them (with the exception of the bio mother) but I know their situation, and appoligize for judging. Even though I know what the issues are, you're right. I should not judge, nor do I think I am better then them, just that I invest more time in my daughters care then they do. Not that her daughters lack of good health is their fault. I have asked questions since my daughter is born and have gotten answers, and maybe just wonder why they didn't or why they don't do the same.

8) And I am sorry if I sound whinny, just talking and taking in all the info and trying to give everyone the most information as I can.

9) By the way, the other family has no idea of us being in the same school, like I said, I was just there at the time and found out.

10) And finally, on that note I have been working with the board and they feel the same as me, so far. The cost in the end for them, ensuring little contact, extra faculty, EA."s and such, definetly outweight the two girls sharing the hallways at such a young age.


If you have a problem with me, on this site expressing, or asking, or commenting on any one topic that I feel is important to me, then don't read my post and by all meens don't add your two sense. I didn't want to sound or come accross insensitive, by goaly gee, we are only talking about my daughter. I am, and have commented to a few of your posts, so whats the big deal with sharing? THis is what this site if for. I appreciate ALL of your comments, and so forth, and even welcome more, but in the end, we are here for help so I don't take your comments to heart so yell at me all you want. In the end, I will still do and keep doing what is best for my child. It's just nice to hear your thoughts.


ps. I've done my homework as far as MY daughters health. NO you're right again, I might not know all the viral infections and may have categorized B-cepecia as viral, when you're right it is bacterial. HERE is your hero biscuit!!!!!!! I keep track of my daughters problems with her illness, that's all I can do right now. As the problem and/or complications arise, I will inform myself accordingly and be as deligent then, as I am now with her health. thanks again

pss. you are right again, I have been really lucky to date, she is healthy. You are right again, I will be hurt and upset when she isn't so healthy, but this is the reason, I try so hard to do the right thing, cause more then anything, I would hate to spend her teanage yrs. wondering if I did all that I could when she was younger. say five yrs old.

 

[anonymous]

All I have to say is wow, I am done. best of luck with your childs health. That's semi sarcastic, semi sincere and a somewhat controlling comment, just as you and your posts seem to be. you say you are open and then you tell us what we should and shouldn't say. how about this, good luck getting many more responses. And here's your hero biscuit for getting the school district to agree with you. Now good luck with getting them to act on it.

Julie

 

[anonymous]

Original Poster,
I think you're doing a good job in caring for you daughter & wanting what's best for her. Keep up your vigilance.
And anyone that has NEVER passed judgement on someone else feel free to respond after me. That is one of my areas that I struggle with, judging people. I judge/see adults smoking in cars with their kids in there (window's rolled up), or people that can't affort school lunches-but can afford cigarettes, etc. and I make assumptions. I don't always judge and really am making an effort to do better, but my point is....we've probably all done it, so no one can judge you unless they've never judged themselves.
One other point I'd like to ask some "older" CFers is....do you think b cepacia and even MRSA was even diagnosed in the CF community when we were in kingergarten? I really don't remember hearing about them until maybe the last 5-10 years. That in itself would be a reason that she has more of a concern that our parents did because pseudomonas and plain ole staph is all I remember my parents being concerned about.

 

[anonymous]

To the original poster
Hello I am Kaitsmom and I too have a daughter who goes to the same school with another child that has CF.After reading this post many times lately and even talking with the other childs mother , I decided to call my clinic today and ask a few questions, obviously i can not and would not ask what the other child cultures but both girls do go to the same clinic as well. I asked if the girls should play together and i was told that really they do not encourage that because of cross-contamination. I know what bacterias my daughter cultures and I have told the other parent but unfortunatly she does not share the same info. with me, which is her right and I do not hold that against her. She has 2 children with CF and she is a stay at home mom and doesnt understand how I work and my daughter's health is better than her childs. I really feel for her and I pray for her and her children, I am very concerned and I get really emotional about CF, whether it be my child or someone else.

Of course I think that everyone is so worried about the bacteria b cepacia, well i asked about that today because i also worry about it. My nurse informed me that of course it is not a "good bug" to get but it is not the end of the world!!!! She also informed me that there are several different strains of this bacteria when long ago everyone just thought that b cepacia was b cepacia, obviously that is no longer the case.. She also informed me that there are other bacteria that one person with CF might do well with and another CFer may really have a hard time with.

I asked if she thought that i should move my child to another school or even homeschool, she said no, which to be truthful with you, I do not think that my daughter would be happy with this only because she loves school and her friends so much and I want her to live a normal life!!!
Also i understand that you said you have time to spend with your child and her treatments, there are some of us that do work and work alot, i used to work 60-70hours a week and i stilll made sure that i had time for my daughter and her treatments, I am not trying to be rude , i just want you to understand that i still work and my daughter is still healthy ( Praise God) and the other mother doesn't work and her child is not so healthy right now.she does her treatments 4x a day and she does this with 2 children, she is exhausted!!! I guess my point is i think that taking good care of our CF children is obviously essential but sometimes you can do everything "right " and that doesn't really matter to this disease!!!
My nurse was even happy to tell me that there are alot more people with CF and b cepacia living in their 30-40's that go to the same clinic as we do.

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

 

[NoDayButToday]

One thing I have to say--
If it is her district and not yours, regardless of what the school is saying now, they can't DENY the other girl an education because of your fears.
What extra faculty would be needed to enable limited contact between the two girls? A former enforcer of restraining orders to ensure they stay at least THIS far apart? You say you care for the other child in this situation, but your posts are laced with disgust for and an attitude of superiority over the other family:

"Anyway, the other child will not be affected by the choice of another school, nor will her mother care"
"I can't understand why the other family wouldn't second guess their choice"
"Now, with all do respect, the mom wasn't there, it was her boyfriend and when I asked him what is daughter took as far as enzyme, he couldn't tell me nor did he know what, if any types of medicin she was on. This is my opinion, but that is pretty neglectful on their part"
"And then to send the uneducated boyfriend to a meeting smelling like smoke and dope, was a second clue that their not in it to protect and do the right thing for her daughter at all costs. I would have been there before the boyfriend even if I was the president, I would have called in sick to be there for her."
"AS I heard those words, I casually made my way towards him and started up a conversation. No he wasn't being ovasive, Just naturally stupid!!!!."
"mother has yet to be seen in public. I really dont' care what her circomstances are"
"her circumstances aren't my problem cause she has made her choices as well"
"I invest more time in my daughters care then they do"
"I have asked questions since my daughter is born and have gotten answers, and maybe just wonder why they didn't or why they don't do the same."

If that isn't a lack of care and compassion... I don't know what is. But good luck with everything.

PS: Emily, we did have a great time didn't we?

 

[anonymous]

<<PS: Emily, we did have a great time didn't we? >>

My comment is off topic - I refuse to get into a discussion when it starts to turn ugly. I just think it's great that Emily and Coll got to meet and spend the day together. I think that's really really....cool! I really hope someday that my son is able to make a lot of friends with cf and know that there are many others in the same boat. Sound like you both had a blast - wish I could have joined you. NYC is my very favorite city!!! Tell us more about it if you get a chance. Did you take any pics??

Carey

 

[anonymous]

To the original poster, I just hope your daughter isn't aware about your feelings. I know you think you're justified but I hope after posting here you might see that your feelings are out of control. 9 out of 10 people think you need to chill. She is your responsibility, not the other family's, not the school's. She needs to learn how to love and respect other people, it's your job to teach her that, so I just hope that she doesn't find out how you feel about this other family. Academics won't do her any good, excellent health won't do her any good, if she can't treat people the way she would want to be treated and she can't learn that if you behave this way. Re-examine your priorities, please.

 

[Emily65Roses]

We had a great time, if I do say so myself. We went to a giant Toys R Us in Times Square, and lunch at a really cute little Italian restaurant. Absolutely we took a few pictures. I have yet to get them developed, but when I do, they will go on my photo page, and I will be sure to link you all. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[NoDayButToday]

We had a most excellent time!<img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">