Nitrous Oxide

jshet

New member
i never said it was an absolute contradiction, i said it was a contradition. Again i only SHARED my experience and the FACT that it is a contradiction. The people discussing this with ME are intelligent, and able to ask their dentist or health care provider before making THEIR own decision. By sharing MY experience, others who feel the need can discuss the use of it prior to any procedure..
I NEVER posted anything about the way it works only that it is a contradiction. So why you are implying that i shared completely unsupported evidence is not true. I shared only the information thst it is a contradiction nothing else, which is substantiated.
you seem to have some sort of issue.
I gave NO misinformation. If you do not like this thread, thats fine. But do not come with such a snotty attitude trying to turn my post into something it never was.
also, if you read my original post, you will see i was asking QUESTIONS for people who have used nitrius oxide and what their experiences were. I was not writing an INFORMATIVE post. I was looking for information.
 
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DmT145

Guest
i never said it was an absolute contradiction, i said it was a contradition. Again i only SHARED my experience and the FACT that it is a contradiction. The people discussing this with ME are intelligent, and able to ask their dentist or health care provider before making THEIR own decision. By sharing MY experience, others who feel the need can discuss the use of it prior to any procedure..
I NEVER posted anything about the way it works only that it is a contradiction. So why you are implying that i shared completely unsupported evidence is not true. I shared only the information thst it is a contradiction nothing else, which is substantiated.
you seem to have some sort of issue.
I gave NO misinformation. If you do not like this thread, thats fine. But do not come with such a snotty attitude trying to turn my post into something it never was.

Well, that's the thing about language and communication: It doesn't exist in a vacuum. What you say is constantly interpreted and applied by others, often leading to mis-communication. A mis-communication like we've apparently had with the word contraindication. So we need to be careful about what is said and what isn't.

It's true that you did not say that CF was an absolute contraindication, which is good, since absolutes are very difficult to arrive at. However, the thread seems to be framed in a reasonably simplistic way, inferring that people with CF should not be given nitrous. When framed this way, it makes it look like CF is an absolute contraindication. Indeed, in the next sentence, you emphasize the word "FACT" when describing the contraindication. It would be nice if every condition could have a classed system of relative contraindication, like pregnancy does. Unfortunately, this isn't the case and the cost/benefit analysis for any treatment or medication must be something you consider, with the assistance of your physicians and pharmacists. And, on almost every other topic I see here, that is done. People are posting research on new therapies all the time here, so I'm not sure why the same wouldn't be the case for non-disease specific treatments/medication.

What you witnessed with your child, may be a really common adverse event associated with nitrous (obviously I can't know this with 100% certainty). The knowledge of this adverse event, and why it occurs, is exactly why many delivery systems use self-administration as a passive safety mechanism. All medications have adverse events associated with them, and while you may think that only posting an adverse event, without any understanding or information about how the medication works, is a bit like someone posting a blanket warning about narcotics, and only citing one adverse event. I highly doubt this simplistic model would work on a thread about CFTR potentiators. Would anyone abandon Kalydeco because some people had some elevated liver enzymes? Probably not, but then Kalydeco has a much greater benefit than nitrous. Of course, the only way that you could know that is to educate yourself about the medication, which nobody seems interested in on this thread.

Regarding what others do with the information you've shared, some people on this very thread have already indicated that they do not think it's their responsibility to safeguard themselves or their children. The buck stops with the doc. It's not my responsibility to know. Of course, this is part of how medical errors occur. Overworked docs with 80+ patients on their service, often very complex cases, cannot humanly be expected to operate without error. It's nice to have an informed patient. It's nightmarish to have a mis-informed patient. I can imagine, from some of the responses here, someone walking into their child's dentist office and refusing nitrous based solely on a scary report. Fear sells, if you need any proof of this, watch network news for a few hours. If you can scare a group of educated Americans that Y2K will melt down the computer infrastructure or that vaccines are the government trying to kill us, you certainly can take a real adverse event and turn it into something to be feared, instead of understood. Network news is a great example of the mindset of a large portion of the populace. They don't want to understand, they just want to be told in a 60 soundbite what they need to avoid.

I assume this wasn't intended as a fear-mongering piece, so we need to ask ourselves: What is it, then? Well, you start out emphasizing "FACT," but then when faced with some consequences inherent with sharing information using demonstrably faulty tools, like language, quickly retreat to a position of "your experience" I don't necessarily buy that you only came here to share some information and ask questions when you later state: "I hope many see this, and do not allow it to be used on them ir their children if they have cf. - See more at: http://forum.cysticfibrosis.com/threads/128615-Nitrous-Oxide#sthash.a7nrCHFL.dpuf"

In one instance your're firmly planted in "FACT" and your stated goal is to steer as many people away from nitrous as possible (again with absolutely no understanding as to why) and the other you're simply looking for information and sharing your experience. The reality is that both of these positions have consequences, although one more than the other. As with medication, some of these consequences will be unintended on your part. Unlike medication, the easiest way to relieve yourself of unintended consequences is to present as much information as you can. That along with avoiding absolutes and conclusions you don't have the evidence to support.

Unfortunately, when you said that you posted NO mis-information, you're correct. You also correctly state that you did not share unsupported information. That's the problem. You've shared a story and are making yourself clear that you hope that many people will be steered clear of nitrous based on your testimony. What you need to to is share your story and, if there is sufficient evidence to back up your warning to CF patients, share that evidence objectively. You instead seem to take the very entitled position that your experience is worth just as much as the actual data. I see this position all over facebook as well. What's even more concerning is that a lot of others are willing to take someone's experience over data. Yet, when I actually hold your post to the flame of accountability, you call me snotty and retreat to the 'it's just my opinion' stance.

If you want to make an "informative" post, do just that, but you have to put all the information on the table, not just the bits that validate your experience. If you want to ask questions, do that, but don't come back with a mission statement like "I hope many see this and do not allow it to be used..."
 

jshet

New member
OMG. You are crazy. I sharded an experience and the information i received from his doctor regarding it being a contradiction, and thats it. I am done discussing this period, i do not have the time.
 
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DmT145

Guest
OMG. You are crazy. I sharded an experience and the information i received from his doctor regarding it being a contradiction, and thats it. I am done discussing this period, i do not have the time.

Now I'm crazy, eh?

Yeah, I know, you only have time for that 60 second, self-entitled soundbite; but can't be bothered to write something of substance.

For anyone watching who might want to learn:

General= http://en.wikipedia.org/wiki/Nitrous_oxide

Use in dentistry: http://emedicine.medscape.com/article/1413427-overview#a09
 

Aboveallislove

Super Moderator
jshet,
Thank you so much for providing the INFORMATION you DID. And everything you say about what you SAID is absolutely true! I am so sorry for the bizarre vitriol directed at you.

I am so very sorry for the utter terror you experienced. I can only imagine how horrifying that was.
 

jshet

New member
Thank you Aboveallislove. I am not sure what i said to upset this person. After looking back on other comments on other posts from them, i saw i was not the only one who had this type of encounter with them, nor do they have cf or care for soneone thst does. Which is fine. I love this forum, and i feel so fortunate to have others in similar situations as i am. I am still learning about cf, and how it effects my son everyday.
The knowledge so many have on here and are able to share i think has helped me more than anything else to have learned to help my son and our family deal with his disease. I would never want to scare anyone needlessly.
its funny how you can feel so close to people you have never met, and for that i will always be grateful.

my only intention was to alert others to ask questions about nitrius oxide, know what happened to my son, and realize there are others alternatives to using it.
 

2roses

New member
Jshet,
I support what you said 100% and appreciate that your experience may not be ours. I didn't know nitrous is contraindicated (not 'contradicted,' btw) in CF and will bring up my concern if its use is ever proposed--so thank you! You did the right thing and should not be targeted negatively for it. You were not making wild claims nor overreacting.
 
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DmT145

Guest
So, you have time to research my posting history, but not talk about nitrous oxide. I mean, how am I supposed to take anything said here as anything other than glorified opinion. If you look at my very first post, all I said was that a little understanding would go a long way in pushing back fear. I said this well after you had already declared that you hoped your post would turn many people away from nitrous. You've had a scary experience and, rather than put effort into understanding it, you're in full blown panicked media mode, labeling nitrous something that's to be avoided.

What I can't seem to get you to understand is that, while you have not presented false information, you also haven't provided much true information. You've described a phenomena, which you found scary, and then immediately judged nitrous to be dangerous enough to avoid. I'm asking what information you have to declare nitrous dangerous enough that it should be avoided and what safer alternative you have identified. You're only giving us what you have, which isn't the whole story. You're admittedly are not familiar with nitrous, so all you have right now is the experience. Yet, you've made a judgement already and hope to influence other people through this thread. I'm baffled that you have stated several times that you want to ask questions and learn, and at every opportunity to do so, you have clung to your experience and retreated to this position of 'all I need to do is relate my experience and then my obligation is done.' I'm saying that maybe you should put a little more effort into your posts.

I know your friends think they are being supportive, but all I kept imagining is a parent or friends coming to the aid of a distraught child after a particularly cringe worthy talent show performance. I know you disagree, but at least I respect you enough as a person to treat you like an adult. If I see an adult making judgement that I don't think their evidence can support, I'm going to call that out. The appropriate adult response is to have a discussion and learn. I have not yet seen that adult response from anyone here, and as such you'll continue to remain in ignorance about nitrous...at best. Worst case scenario is that you or someone else looking on will make a decision based on your experience. Maybe they don't realize how much more dangerous sedation or general anesthesia is for people with respiratory disease. They refuse the nitrous (based on a judgement made in ignorance and out of fear) and then they, or their child, has a unnecessary complication from sedation.

It's rather clear that much more emphasis is given to one's feelings and not the facts on this forum (unless you disagree with someone and then you're full of vitriol). I'll leave you in your ignorance about nitrous, but I do hope that this attitude isn't representative of the larger CF community.
 

ethan508

New member
Dmt145, if you want adult discussion, you'll need to work on your own responses. A bit of compassion, a bit of political savvy, and a brief correction of any misinformation (like a statistic on how frequent this sort of contraindication occurs) may have been more effective than a full barrage of negativity.

An internet forum can be a place to share personal experience, and we really shouldn’t discourage honest sharing. From my experience this forum seems mature enough to understand that this experience was anecdotal (non-scientific), was emotionally difficult, and a topic that we can learn more about from personal research or a discussion with medical professionals.
 
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DmT145

Guest
Ah yes, it's all my fault. Of course, my exasperation didn't show until several posts back and forth, with the OP coming to a conclusion before they have any understanding of the facts. It's this principle that bothers me. It seems that the OP is saying: 'I don't care what is actually true, this is my experience and I have a right to have an opinion about it and to broadcast that opinion, unchallenged, and no matter the consequence.' Of course, I can't know their inner thoughts, and since I have not received a response that wasn't dismissive or condescending, I probably never will. Funny that I'm the one who needs to work on my political correctness, yet I'm not the one throwing around language like "snotty" and "bizarre vitriol."

As the OP pointed out, I neither have CF, nor does anyone in my family. I do work with respiratory patients and you can't really work in respiratory care and not at least hear about CF. I came here to learn, mostly. What I've learned was not necessarily what I had expected. I've learned that most patients are under-informed. I've learned that many have a massive sense of entitlement. I've learned that, as a member of the in-group, you apparently get ready defense from your compatriots, whether you are right, wrong or otherwise. It also seems that the patients are abandoning sites like this en masse, and the remaining members are mostly friends and family. It's also quite apparent that most of you don't care to talk to someone who won't, or can't, give emotional support. Obviously, I can't provide anything in the way of emotional understanding and I also don't really care to. What I can provide is perhaps some clarity from the clinical end of things. I was ready to provide that on this thread, as I have used nitrous and am familiar with it, but not one person seemed interested in actually having a discussion about the topic of the thread. No, everyone was quite happy with an anecdotal story and some conclusions that were made in the absence of any understanding. I see quite clearly now why patients are leaving these environments. It's antiquated and those who are left are here to support the in-group, no matter what.

You don't seem to have anything particularly useful to learn and obviously do not seek understanding. I won't waste any more of our respective time.
 
Dear Dmt: We value everyone's opinion on here and we don't all agree. Nobody is against you or blaming you for anything. You have an opinion just like Jshet does and we value both of your opinions. You are welcome to visit here and share your opinions but try to word your opinions so you don't seem to be attacking another's opinion. This forum is not just for scientific fact but also support from others who are living the same life and experiences and sharing the same fears and joys in all the moments. We know Jshet and we do support her but that doesn't mean we don't support you too. You both have opened my eyes to nitrous oxide and so I will be sure to learn all about it from both sides when and if we ever need it. Please don't feel you are not part of the in-group. We are also all able to share our experiences on this forum even if there are no scientific proof or facts behind what we say. We are living the life and that is fact enough. Thank you for sharing your experience and knowledge of it too.
 

ethan508

New member
What I can provide is perhaps some clarity from the clinical end of things..

@DmT145: One of a clinician's primary responsibilities is to grasp the material well enough to explain it to a layman. Or at least be able to point to a respectable source on the topic. In that you’ve failed.

Your posts had no useful medical knoweldge, no biological clarifications, and contained no evidences. They were the long form version of "I'm right, you're wrong; I'm smart and you're not". Your sources were a waste of time to read. The Wikipedia article you posted says nothing on topic of CF folks using Nitrous (and Wikipedia is a laughable source for a clinician). The Medscape source you posted states: "Nitrous oxide is contraindicated in patients with significant respiratory compromise," which is pretty much the point Jshet was making. The language used by Jshet may be a bit imprecise but only the obtuse would take umbrage at the use of casual language in daily conversation.

You sir, have a long way to go in your attempts to help others with your knowledge. If you don’t understand why this problem is on your end, you have no room to call others out on their ignorance and entitlement.
 

jaimers

Super Moderator
I think one thing to think about when a thread like this spirals down into angry back and forth is that it's really difficult to interpret the tone of a post over the internet. Did DMT's tone make him/her sound like a jerk? yes. Was that their intention? perhaps but hopefully not. Could there have been a less biased original post? sure, but being scientifically unbiased wasn't the original intent of JShet's post. It was speaking about a personal experience that was extremely scary and that type of situation doesn't usually lend itself to medical research prior to sharing said experience.
I think it speaks volumes that a clinician like Dmt would take his/her free time and spend it on a site like this to (hopefully) help them gain a better understanding of a disease many people know nothing about. I'm thankful that Dmt thought to do that and I think it has the potential to make him/her a more compassionate and empathetic practitioner. and I hope we can learn from Dmt's experience as a therapist as well. You make some good points that we can always do more research and present more unbiased opinions when posting but I don't think that is really a realistic prospect or the purpose of this forum. this isn't a community that is solely a place to talk about the medical aspects of CF. For many of us we grew up in hospitals and are, for lack of a better term, "professional" patients. I'm sure you run across a lot of patients that are completely uninformed about their disease, whether CF or something else and we can appreciate your desire to educate them and us. Many of us have been "doing" CF for our entire lives and have armies of care teams at our hospitals and clinics and would never go into any type of procedure and demand to not use something like nitrous oxide because someone on the internet told me not to. Would I ask about it and perhaps mention a friend's bad experience? definitely. But I think your assumption that what is said here is taken always as absolute fact is wrong and frankly insulting. Sure we post questions and exchange information and experiences regarding CF from a medical standpoint but there is absolutely no question that for many on this site this is a place of emotional support and care. Seems weird to many to seek that over the internet which is in it's nature rather impersonal but as I'm sure you know, the infection control guidelines don't allow for us to meet in our clinics in support groups or gather at large CF family camp type events anymore. This is where we come now (for many of us at least--don't want to speak for everyone).
We are not Cystic Fibrosis. We are human beings that live with this as a part of our life for our whole life. we need our doctors and other clinicians like yourself to recognize that there is a human behind the diagnosis and behind the computer screen with very real and valid experiences. And from an experiential standpoint no doctor, no respiratory or physical therapist, no dietician or surgeon will ever understand CF like we do. Will you know more scientifically than most? I have no doubt about it. But there is more to the disease than that as I hope you and all clinicians can appreciate. For us, as patients and human beings, emotions are involved in our CF life and it's not reasonable for us to divorce those from our posts in the name of perfect scientific presentation.

I really do think, Dmt, that your intentions were good and I am really thankful, as I mentioned previously, that you took your free time and spent it here and I hope you stay. I hope you can get to know Jshet and you'll find that she's a nice person and great mom with a son that has a lot of other serious health concerns outside of CF that make his CF life and care significantly harder and more complicated. She's not out to spread fear and misinformation. This is, and should continue to be, a safe place for her to share her experiences and ask others questions without having to be scientifically correct. And it should be a safe place for you to share your clinical and professional experience and I hope you stick around and do that too.
 
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