Guest guest Posted March 1, 2001 Report Share Posted March 1, 2001 julie, xrays should be taken every 6 months , then you can compare them and see if there has been any change . xrays show the scaring that you have to keep an eye on. if you have no xrays then you can't compare. chris On Sun, 25 Feb 2001 20:56:30 +1030, cfparents wrote: > Eilish has her appt. tomorrow and she also has to have a chest x-ray. Its been about a year since she had a chest x-ray. Do they do this every year or should I start to worry that maybe they are looking for some kind of damage? > I think its probably routine, but because I know she's sick and they'll admit her this week, I start to worry about silly things. > Thanks to the person who ages ago mentioned to get the earliest appt's. possible to avoid alot of germs in the clinic. Although we did usually get there early, now of reading that I make sure they give us the first or second appt. That was a good piece of advise! > Were having trouble with our airconditioner (water wise) so Im thinking that has made her sick, could it? > s getting out a technician tomorrow or Tues. to fix whatever needs doing. and his dad spend 8 hours up and down the ladder on the roof doing things. Its only 2 years old so its very annoying, and cost $5000.00. I feel awful that 'we' may have made her sick again from the aircon. > > > (mummy to Liam 6 wocf and Eilish 3 wcf) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Our clinic and I know at least one clinic in St. Louis only does x-rays once a year. That is assuming there are no problems. I would think they would start to do them more frequently if they saw changes. Lori mom to Scout 2wCF Re: xrays > julie, > xrays should be taken every 6 months , then you can compare them and see if > there has been any change . xrays show the scaring that you have to keep an > eye on. if you have no xrays then you can't compare. > > chris > > On Sun, 25 Feb 2001 20:56:30 +1030, cfparents wrote: > > > Eilish has her appt. tomorrow and she also has to have a chest x-ray. > Its been about a year since she had a chest x-ray. Do they do this every > year or should I start to worry that maybe they are looking for some kind of > damage? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 I don't want to sound like i am telling you but a dr looks at the patient just like you and listens to them just like you but to get a full picture of what is going on in their lungs is to look and since they don't have zippers on their chest(that would be alot easier) we have to get chest xrays and then we can see if there is any change. when they are in the hospital , then they take x rays to see what the change is and more than likely its worse and then another before you leave to see the change is better,but then you still have an xray of when they were sick, so the best time to get xrays is when your child is at there best and feeling well. then you have a good xray and go off of them then when there is damage done to the lung that you can't reverse then you have new xrays taken and go off of them. brandon has new xrays taken every other month. his damage keeps coming. it is a slow process but we must keep an eye on it. even though they say xray machines give off radiation, cf will kill him faster than the radiation will. most of the people on this list are with children that are very young, brandon is only 12 but i have been living it for 12 yeasr,danas daughter is 10 and she has been living with it for 10 years.i am sure the are other can't think right now. i am in no way saying that you don't know or understand i am saying we have lived with it for so much longer and have had more experience that we can help with the younger children. sorry chris mom of 3 brandon 12 yrs w cf On Fri, 2 Mar 2001 07:45:00 -0600, cfparents wrote: > Our clinic and I know at least one clinic in St. Louis only does x-rays once > a year. That is assuming there are no problems. I would think they would > start to do them more frequently if they saw changes. > > Lori > mom to Scout 2wCF > > Re: xrays > > > > julie, > > xrays should be taken every 6 months , then you can compare them and see > if > > there has been any change . xrays show the scaring that you have to keep > an > > eye on. if you have no xrays then you can't compare. > > > > chris > > > > On Sun, 25 Feb 2001 20:56:30 +1030, cfparents wrote: > > > > > Eilish has her appt. tomorrow and she also has to have a chest x-ray. > > Its been about a year since she had a chest x-ray. Do they do this every > > year or should I start to worry that maybe they are looking for some kind > of > > damage? > > > _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Hi, what about cat scans versus x-rays? Are X-rays really precise enough to show the earliest beginnings of lung damages? Fiona hasn't had x-rays so far and the docs don't plan to do them until Fiona has obvious lung involvement. Personally I would prefer cat scans, because we are talking about body tissue here and not bones. Any thoughts about this anyone? Torsten Krafft dad of Fiona 4wcf e-mail: torstenkrafft@... P.S. you write that you don't wanna sound like you are telling us. Agreed, but unfortunately you do :-(( Re: xrays > I don't want to sound like i am telling you > but a dr looks at the patient just like you and listens to them just like > you but to get a full picture of what is going on in their lungs is to look > and since they don't have zippers on their chest(that would be alot easier) > we have to get chest xrays and then we can see if there is any change. when > they are in the hospital , then they take x rays to see what the change is > and more than likely its worse and then another before you leave to see the > change is better,but then you still have an xray of when they were sick, > so the best time to get xrays is when your child is at there best and > feeling well. then you have a good xray and go off of them > then when there is damage done to the lung that you can't reverse then you > have new xrays taken and go off of them. brandon has new xrays taken every > other month. > his damage keeps coming. it is a slow process but we must keep an eye on it. > > even though they say xray machines give off radiation, cf will kill him > faster than the radiation will. > > most of the people on this list are with children that are very young, > brandon is only 12 but i have been living it for 12 yeasr,danas daughter is > 10 and she has been living with it for 10 years.i am sure the are other > can't think right now. > i am in no way saying that you don't know or understand i am saying we have > lived with it for so much longer and have had more experience that we can > help with the younger children. > sorry > > chris > mom of 3 > brandon 12 yrs w cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 HI I think x-rays only show so much like you said. But to have a CT scan you have to have anesthesia or sedation if the patient is a baby or toddler. My son is having a CT scan next Friday because of an x-ray taken last friday (upon my request) they saw something, but not sure what. So the next step is the Ct scan. My son's doc has no problem ordering an x-ray whenever I suggest it or she feels he needs one. I'm not at all worried about the radiation, like said, the chances are the CF will be the culprit. Just my 2 cents. Stein..mom of CF (9 mo) asthma, chronic Rotavirus and milk protein allergy & Tori wo/CF ( 3 1/2 yr W/asthma) .......and plenty of pennies to spare! Re: xrays > I don't want to sound like i am telling you > but a dr looks at the patient just like you and listens to them just like > you but to get a full picture of what is going on in their lungs is to look > and since they don't have zippers on their chest(that would be alot easier) > we have to get chest xrays and then we can see if there is any change. when > they are in the hospital , then they take x rays to see what the change is > and more than likely its worse and then another before you leave to see the > change is better,but then you still have an xray of when they were sick, > so the best time to get xrays is when your child is at there best and > feeling well. then you have a good xray and go off of them > then when there is damage done to the lung that you can't reverse then you > have new xrays taken and go off of them. brandon has new xrays taken every > other month. > his damage keeps coming. it is a slow process but we must keep an eye on it. > > even though they say xray machines give off radiation, cf will kill him > faster than the radiation will. > > most of the people on this list are with children that are very young, > brandon is only 12 but i have been living it for 12 yeasr,danas daughter is > 10 and she has been living with it for 10 years.i am sure the are other > can't think right now. > i am in no way saying that you don't know or understand i am saying we have > lived with it for so much longer and have had more experience that we can > help with the younger children. > sorry > > chris > mom of 3 > brandon 12 yrs w cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 First I got your off-list note and I was in no way offended by this note. I have a much thicker skin than that! I do think you misunderstood the intent of my original post. I wasn't in any way indicating there was anything wrong with having more frequent x-rays. I was simply stating it is normal to go to a clinic that only does them once a year. I think more frequent ones are on the unusual side - just like many clinics, unfortunately in my opinion, only do throat cultures twice a year. As I said in my posting, I think our clinic would only do more frequent x-rays if they saw changes. Some people out there may have the luxury of going to a clinic that lets them decide the frequency of things like that, but ours certainly doesn't. Part (a great deal) of this I am sure is decided due to financial issues and what insurance is willing to pay for. On having an older child with CF and thus knowing more from having experienced more - of course you have experienced a lot more and from that gained knowledge I/others haven't. I didn't think I indicated otherwise, but if you somehow read that from my note, let me assure you it was just a misunderstanding. I consider myself an intelligent person who does at least some research on the subject of CF, but some things you have to live to know and that is just all there is to it. On St. Louis, it is a shame that the Dr.s were so arrogant and I appreciate your feedback. I would certainly have a difficult time dealing with that. I have had a least one recommendation for a Dr. at the other CF clinic in St. Louis so maybe we will look into that clinic first. Good luck. Lori mom to Scout 2 wCF Re: xrays > > > > > > > julie, > > > xrays should be taken every 6 months , then you can compare them and > see > > if > > > there has been any change . xrays show the scaring that you have to > keep > > an > > > eye on. if you have no xrays then you can't compare. > > > > > > chris > > > > > > On Sun, 25 Feb 2001 20:56:30 +1030, cfparents wrote: > > > > > > > Eilish has her appt. tomorrow and she also has to have a chest > x-ray. > > > Its been about a year since she had a chest x-ray. Do they do this > every > > > year or should I start to worry that maybe they are looking for some > kind > > of > > > damage? > > > > > > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 Am I wrong, or is this getting heated? Anyway, apparently the protocal for CF centers calls for xrays " at least " annually (in the US, at least). Our doc has always been pretty liberal in his use of xrays, and has done them yearly plus many times when they were sick (plus, they also do xrays after picc placemtents, etc...). We do have one of those docs who, if we said we were worried and would like an xray, he would certainly order one. Lori, it must be really frustrating to deal with doctors who won't listen to your concerns. there are so many parents and people with CF on this list and other list who complain about th is. Remember, xray is just the topic of the day. Last month it was Tobi and its use, other times its pulmozyme or tuneups or frequency of throat cultures.... the treatment choices (and preventive care choices) of docs around the country varies widely. A very humble observation that I would note.......so far, I have only seen one thing that all CF docs uniformly are in agreement about. And its not tobi, pulmozyme, use of IVs, enzymes,breastfeeding vs bottle, or anything scientific. Is the agreement they seem to have whereby they agree to disagree. Since many of us must subscribe, at least in part, to our own docs opinions (though, yes, I do realize there are those exceptions of people who really do wish they had another doc...)....then I guess we have to agree to disagree sometimes, too.... We have to do the best we can with what we have and what we know.....and at the same time, listen and learn from each other, b/c every thing I have ever learned on these lists at some point becomes a reality. So, after rambling, I sign off with a more open mind.....it is refreshing to hear opposite opinions, and opinions that match our own.....BOTH. This is why we all need to be here, together... take care, all.... Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 GREAT POST....as usual.....We do need to be INFORMED and hear all sides...BUT we are the only ones who truly know our own kids.or grandkids:):) thanks , LOVE & HUGS, grandmomBEV Re: xrays Am I wrong, or is this getting heated? Anyway, apparently the protocal for CF centers calls for xrays " at least " annually (in the US, at least). Our doc has always been pretty liberal in his use of xrays, and has done them yearly plus many times when they were sick (plus, they also do xrays after picc placemtents, etc...). We do have one of those docs who, if we said we were worried and would like an xray, he would certainly order one. Lori, it must be really frustrating to deal with doctors who won't listen to your concerns. there are so many parents and people with CF on this list and other list who complain about th is. Remember, xray is just the topic of the day. Last month it was Tobi and its use, other times its pulmozyme or tuneups or frequency of throat cultures.... the treatment choices (and preventive care choices) of docs around the country varies widely. A very humble observation that I would note.......so far, I have only seen one thing that all CF docs uniformly are in agreement about. And its not tobi, pulmozyme, use of IVs, enzymes,breastfeeding vs bottle, or anything scientific. Is the agreement they seem to have whereby they agree to disagree. Since many of us must subscribe, at least in part, to our own docs opinions (though, yes, I do realize there are those exceptions of people who really do wish they had another doc...)....then I guess we have to agree to disagree sometimes, too.... We have to do the best we can with what we have and what we know.....and at the same time, listen and learn from each other, b/c every thing I have ever learned on these lists at some point becomes a reality. So, after rambling, I sign off with a more open mind.....it is refreshing to hear opposite opinions, and opinions that match our own.....BOTH. This is why we all need to be here, together... take care, all.... Jen *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 OOPS, I sent my last mail before I read this one :-)) Thanks n for answering my questions before I have even asked them, LOL Torsten Krafft dad of Fiona 4wcf e-mail: torstenkrafft@... Re: St.Louis > I am sorry to hear the news about , but the process of > evaluation > does show the value of a computerized tomography scan; I had an electron beam > computerized tomography scan (EBCT), a fast speed one and found out a lot that > no X-ray could tell me, even if I had double pneumonia at the time. As my cf > doc keeps telling me, X-Rays were designed for BONES, not soft tissue! > n Rojas wcf who wants to know whole scoop! (as it were) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Just wanted to say that at this point, I agree with and am comfortable with the annual x-ray. (not that it would matter if I wasn't) I am not comfortable with the only two time a year throat culture. Lori Re: xrays > . Lori, it > must be really frustrating to deal with doctors who won't listen to your > concerns. there are so many parents and people with CF on this list and > other list who complain about th is. Remember, xray is just the topic of the > day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Hi Torsten, I thought I 'd just share our experience in reply to your question : During 's hospitalisation for the treatment of a first P.A. isolation, early January, we were adviced to do a CAT scan as it was not anymore done since her diagnosis (more than two years ago). Her X rays have always been very good, clear, no abnormalities. The CAT scan, however, showed a very, very little bit of mucus on the left side. Nothing to worry about, according to the Doctors. Of course, as a parent we worry about it eventhough is in perfect shape, no cough, full of energy. Our doctors confirmed that the only way to have a view on the lung damage is a CAT scan, not an X ray. They underlined that it is important to have a view on the lungs as prevention for serious problems. If we know where the 'mucus' sits we can try to get rid of it with more focussed physiotherapy. I don't know whether this is true, or whether they just want to use their scanners more often as they cost a lot of money and now have to be pay for them. Liesbeth mom to (almost 3 wCF) and Kasper (17 months no CF) > Re: xrays > > Hi, > > what about cat scans versus x-rays? Are X-rays really precise enough to > show > the earliest beginnings of lung damages? Fiona hasn't had x-rays so far > and > the docs don't plan to do them until Fiona has obvious lung involvement. > > Personally I would prefer cat scans, because we are talking about body > tissue here and not bones. Any thoughts about this anyone? > Torsten Krafft > dad of Fiona 4wcf > e-mail: torstenkrafft@... > > P.S. > you write that you don't wanna sound like you are telling us. > Agreed, > but unfortunately you do :-(( > Re: xrays > > > > I don't want to sound like i am telling you > > but a dr looks at the patient just like you and listens to them just > like > > you but to get a full picture of what is going on in their lungs is to > look > > and since they don't have zippers on their chest(that would be alot > easier) > > we have to get chest xrays and then we can see if there is any change. > when > > they are in the hospital , then they take x rays to see what the change > is > > and more than likely its worse and then another before you leave to see > the > > change is better,but then you still have an xray of when they were sick, > > so the best time to get xrays is when your child is at there best and > > feeling well. then you have a good xray and go off of them > > then when there is damage done to the lung that you can't reverse then > you > > have new xrays taken and go off of them. brandon has new xrays taken > every > > other month. > > his damage keeps coming. it is a slow process but we must keep an eye on > it. > > > > even though they say xray machines give off radiation, cf will kill him > > faster than the radiation will. > > > > most of the people on this list are with children that are very young, > > brandon is only 12 but i have been living it for 12 yeasr,danas daughter > is > > 10 and she has been living with it for 10 years.i am sure the are other > > can't think right now. > > i am in no way saying that you don't know or understand i am saying we > have > > lived with it for so much longer and have had more experience that we > can > > help with the younger children. > > sorry > > > > chris > > mom of 3 > > brandon 12 yrs w cf > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Torsten, Hello how are you once again? I read you enquiry regarding CT Scans and write to let you know of 's experience. Last November prior to her admission, she had an ongoing cough. The chest x-ray turned up nothing and so a CT Scan was suggested as she still does not cough up any sputum to do a culture and they could not find anything via the throat culture. I was informed that a CT Scan was eight (8) times more informative and effective than a chest x-ray however of course more radiation. I was not allowed in with her but my husband was. She lay still for approximately 20 minutes while they targetted certain areas of the lung. She was only 4 1/2 so I was proud of her. If she could not have lay still for that period we would have had to consider sedating her. The CT Scan showed that she did not have any obvious signs of lung disease, no bronchiectisis at all. The only thing it did show was some small signs of air trapping which was consistent with her then asthmatic symptoms. As this was inconsistent with her coughing etc we insisted on a bronch where we were told of her first diagnosis of Pseudomonas. Four months later she is well and has no cough (thank God) however she is on nebulised Tobramycin at the moment as a preventer. (We do not have Tobi here at the moment however our docs say that it is not far away and they are negotiating with the company in question). I hope that answers your question re CT Scans. I for one agree with you that they are specifically designed for tissue rather than bone. Take care and say hi to Fiona for us. (Mum of in Oz) Re: xrays > > > > I don't want to sound like i am telling you > > but a dr looks at the patient just like you and listens to them just like > > you but to get a full picture of what is going on in their lungs is to > look > > and since they don't have zippers on their chest(that would be alot > easier) > > we have to get chest xrays and then we can see if there is any change. > when > > they are in the hospital , then they take x rays to see what the change is > > and more than likely its worse and then another before you leave to see > the > > change is better,but then you still have an xray of when they were sick, > > so the best time to get xrays is when your child is at there best and > > feeling well. then you have a good xray and go off of them > > then when there is damage done to the lung that you can't reverse then > you > > have new xrays taken and go off of them. brandon has new xrays taken every > > other month. > > his damage keeps coming. it is a slow process but we must keep an eye on > it. > > > > even though they say xray machines give off radiation, cf will kill him > > faster than the radiation will. > > > > most of the people on this list are with children that are very young, > > brandon is only 12 but i have been living it for 12 yeasr,danas daughter > is > > 10 and she has been living with it for 10 years.i am sure the are other > > can't think right now. > > i am in no way saying that you don't know or understand i am saying we > have > > lived with it for so much longer and have had more experience that we can > > help with the younger children. > > sorry > > > > chris > > mom of 3 > > brandon 12 yrs w cf > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
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