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Kicked out of school for being a CF carrier???
- Thread starter sdavis227
- Start date
Twistofchaos
New member
It's a stupid misunderstanding, and how the hell does that school know the kid is a carrier?
Pretty insane it's a courtcase too (but then I'm European) instead of a 3 minute phonecall.
I've always wanted to beat up a principal Let's kick some a... ..hmm. *quietly goes back to nebbing*
Pretty insane it's a courtcase too (but then I'm European) instead of a 3 minute phonecall.
I've always wanted to beat up a principal Let's kick some a... ..hmm. *quietly goes back to nebbing*
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faithstewart
Guest
I am confused as to why the child that is a carrier is doing treatments? I have not ever heard of that.... I agree, there HAS to be more to this...and what about the dr. that says its like a cancer gene, and that there is no more change of developing CF as a CF carrier than cancer as a cancer "gene" carrier? What the heck... there is ZERO chance of a carrier developing CF..righ? The cancer gene means you are MORE LIKELY TO DEVELOPE CANCER!!!!! So much misinformation in this one little video....
The language used in the news show is confusing (not the CF dr's language, but the medical and legal experts on the show). I figured they were not using the term "carrier" correctly i.e. having one gene mutation. Otherwise, what? 1 in 25 kids would need to be transferred out of the school. I imagined that they were saying that the boy has CF (i.e. two mutations) but no symptoms.
Either way, I think we need better science education in this country.
Either way, I think we need better science education in this country.
faith - I don't think it was the same kid.
But looking more into it it seems that he does have 2 mutations - they just have not diagnosed him because sweat tests have come out negative and the genes have not been shown to cause CF. Here is another link:
http://www.sfgate.com/health/article/Boy-in-school-flap-over-cystic-fibrosis-3944802.php#src=fb
But looking more into it it seems that he does have 2 mutations - they just have not diagnosed him because sweat tests have come out negative and the genes have not been shown to cause CF. Here is another link:
http://www.sfgate.com/health/article/Boy-in-school-flap-over-cystic-fibrosis-3944802.php#src=fb
We know that this kid is a carrier because his parents say that is so. Do we have any idea how many mutations that he has been tested for? I would guess that he was tested at birth for say 250 mutations. I didn't hear his parents presenting any case as to him having a full screening. Frankly they did not show any real knowledge of CF.
If I were running the school, based upon what I do know, I would require the results of a full cf sequencing.
The school is trying to keep the CF patient, that is currently in that school, healthy. And YES, if he has a undetected mutation then he too has CF.
I just saw the second link thar says this kid has two mutations, but not "CLASSIC CYSTIC FIBROSIS".
What in hell is classic CF? I was dx at age 47 Steve was dx at age 70. There is a large group of patients in here who were dx between those ages.
THIS KID HAS CF. The school is right.
Bill
If I were running the school, based upon what I do know, I would require the results of a full cf sequencing.
The school is trying to keep the CF patient, that is currently in that school, healthy. And YES, if he has a undetected mutation then he too has CF.
I just saw the second link thar says this kid has two mutations, but not "CLASSIC CYSTIC FIBROSIS".
What in hell is classic CF? I was dx at age 47 Steve was dx at age 70. There is a large group of patients in here who were dx between those ages.
THIS KID HAS CF. The school is right.
Bill
I just wonder why the parents thought that it was pertinent to share with the school that he has "mutations" if they don't think it's significant enough to do something medically about it.
The video was quite confusing on the facts about the child's genes but I'm happy any time there is media about CF because I believe it raises awareness.
So does this mean that when my child is one of 1500 kids in high school that if someone else is there with CF first that we will have to move him schools?
The video was quite confusing on the facts about the child's genes but I'm happy any time there is media about CF because I believe it raises awareness.
So does this mean that when my child is one of 1500 kids in high school that if someone else is there with CF first that we will have to move him schools?
scrapper1264
New member
I found out a few years ago that a 2 yo girl with CF lived in the neighborhood next to ours through a newspaper article. I gave the Mom a call and we could not believe 2 children with CF lived so close together! I was wondering what we would do in a few years when she started school. I just so happened to see the Mom at her daughter's CF appt (what are the chances that would happen??!!??) over the summer when DS had his, and they said they had just moved over the weekend. Her husband is a principal at another school so they moved into his district.
Originally I had the same reaction that the child was a carrier; however, both the today show clip and newspaper article mention mutationS, not mutation. So two genes IMO = CF. I have a child who passed the sweat test with flying colors -- a normal 32, basically has digestive issues yet two copies of a cf gene. When he cultured pseudomonas he had no symptoms whatsoever. Did the school over react? IMO, yes. Measures could me taken to separate the children without having to have one leave the school.
IMO, the parents and doctors aren't doing the child any favors by saying he's just a carrier. CF is a progressive disease and eventually his lungs will be affected. He could already be carrying CF bacteria and also be susceptible to other cf bugs. In our area the "gold standard" for CF diagnosis is STILL the sweat test. I know of people whose children have failure to thrive, malapsorption, "asthma", culture cf bacteria yet they're relieved their children don't have CF because "they passed the test". One was a colleague of mine whose 14 year old daughter died waiting for a double lung transplant. We have another child in our area who was diagnosed a couple years ago after he got sick and cultured a nasty bacteria. He's currently being evaluated for a double lung transplant and is only 10 years old.
IMO, the parents and doctors aren't doing the child any favors by saying he's just a carrier. CF is a progressive disease and eventually his lungs will be affected. He could already be carrying CF bacteria and also be susceptible to other cf bugs. In our area the "gold standard" for CF diagnosis is STILL the sweat test. I know of people whose children have failure to thrive, malapsorption, "asthma", culture cf bacteria yet they're relieved their children don't have CF because "they passed the test". One was a colleague of mine whose 14 year old daughter died waiting for a double lung transplant. We have another child in our area who was diagnosed a couple years ago after he got sick and cultured a nasty bacteria. He's currently being evaluated for a double lung transplant and is only 10 years old.
chicagocubsmom
New member
The SFGate article has more information about the background. I'm on the fence on this, it's helpful to hear from Ratatosk that it's possible to have two mutations and still pass a sweat test (didn't know that!). I guess I lean more towards Printer's reaction. If I knew there was another CFer in the school would I be mad? You betcha! Would I consider sueing? You betcha! We're not even allowed in the waiting room at the hospital when we go for appointments.
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faithstewart
Guest
I think there are major inconsistencies even in the CF community when it comes to CF education. We were told, when my daughter was diagnosed, that two genes meant you have CF, period. If you PASS a sweat test they will not normally check for other genes. My daughter had one gene found at birth, had an inconclusive sweat test, so they did a full genetic panel and found another, very rare, mutation. She has NO symptoms, but there is no discussion of anything other thant he FACT that she HAS CF. Frankly, this whole crazy case is insane. It is rare there will be more than 2 or 3 with CF in a school, and keeping them 3 feet away from each other shouldnot be an issue...different classes, different recesses, they are likely not dumb either. They will understand to move to the other side of the hall if they happen to pass each other. It just REALLY irks me that there are so many inconsistencies in what the CF community it taught about the disease, let alone the rest of the world.
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faithstewart
Guest
Thanks for this!faith - I don't think it was the same kid.
But looking more into it it seems that he does have 2 mutations - they just have not diagnosed him because sweat tests have come out negative and the genes have not been shown to cause CF. Here is another link:
http://www.sfgate.com/health/article/Boy-in-school-flap-over-cystic-fibrosis-3944802.php#src=fb
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faithstewart
Guest
After reading the newspaper article, I think they use the plural of mutation incorrectly. It sounds to me like he had ONE mutation, had a positive sweat test, and it should have been over. Seriously, this whole thing rocks everything ever doctor at 3 different CF Centers, including Vanderbilt, has told us. I'm gonna rewatch the video too...I would have sworn it was the same kid and parents doing the treatments, but this article says no...so okay.
Okay, so initially I reacted in anger...are you kidding me?! but reading the newspaper article changes that for me. I'm glad I did so. I think more investigating should be done. Are the other two students in the same grade as this boy? If my son weren't the only one in his school that had this, I'm sure as parents and faculty we could get together and come to an agreement, or a plan as far as how to keep them a distance apart. If it meant staggering lunches, or whatever, I would be happy to oblige. I don't agree he should have to change schools. But I do agree that it looks like he has CF.
BandDirectorSteve
New member
Hi all. I used to post here many years ago under the name TCNJCystic. Couldnt find the password, which was registered to an old email address. Anyway, saw this story and thought I would visit to share with you this absolutely infuriating article. Enjoy! http://www.catholic.org/national/national_story.php?id=48086
Aboveallislove
Super Moderator
The media rarely gets anything right and likes to craft stories that do shock and anger. Based on the additional "facts," it seems the real question is what is a reasonable school district policy re CF. And I think that could depend on lots of factors. If it is possible to keep each CFer in a separate school, that would seem best and that in that case the one already "settled" would stay at the current school. I think that is reasonable (absent an hour commute for the other kid or other similar factors) . It is not just separate classes lunch etc, but if only one nurses office and the kids have to go there for meds, or use the same restroom, or locker room (i.e., showers--jr high), etc. Lots of factors we don't know. But leave it to the lawyers to cost everyone alot of money and just escalate. We were better off when we were not just "attorneys at law," but truly "counselors".
Aboveallislove
Super Moderator
Okay, this story just made the headlines at another news site I read and the story indicated the boy has "mutations" plural and that the transfer is to another middle school within 3 miles. And that the current school has 2 CFers (sibblings). Given this added information, I think it was the appropriate response.
BandDirectorSteve - this has NOTHING to do with Obama's healthcare plan if that was the point you were trying to get across? The parents are the ones that told the school about the child's genetics.
I also agree that we have been told different things. I had always thought that two CF genes = CF even with a negative sweat test but was told by another user on here that the sweat test is the "gold standard". I, personally, would rather be safe than sorry but that is me and my family.
I also agree that we have been told different things. I had always thought that two CF genes = CF even with a negative sweat test but was told by another user on here that the sweat test is the "gold standard". I, personally, would rather be safe than sorry but that is me and my family.
Aboveallislove
Super Moderator
Two other thoughts: If the child isn't being treated for CF, with CF (i.e., 2 mutations), he could well be/start harboring some nasty bugs that put the other kids at risk OR be at risk for the other nasty bugs he has. It just seems like this is in every ones best interest.