Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Hi Tony, Shantell's always had trouble with her sinuses. She's had two sinus surgeries, and they went right back to being filled up within a week the first time and a couple of weeks the second time (which was more extensive)! She said no more. She found a good ENT who suggested a new treatment that she's been doing now for about 10 months. I've never seen her so healthy, and feeling so good (knock on wood). You may want to check with your doctor, of course. She has pseudomonas in her sinus cavities, so you will need to find out what he is growing. She takes a disposable 16 ml syring with sodium chloride solution (for lubrication) and Gentymycin (antibiotic). Since the syringes are disposable, it prevents any reinfection that you might get if using something such as the Water Pik (recommended here by the CF Center). You can ask about his, it is working for us! Oh, by the way, Welcome! FG, mom of Shantell 19yr wcf polyps I think the most difficult thing for my son to handle is the polyps in his sinuses.They make it difficult for him to breathe and it is painful when he has them removed as it cant be done under anaesthetic. Has anyone any thoughts how polyps can be controlled..I expect taking medication to keep the mucus level down is the obvious answer...but is there any more natural way ? Tony father of Ned aged 21 _____________________________________________________________________________ http://messenger.yahoo.com.au - Yahoo! Messenger - Voice chat, mail alerts, stock quotes and favourite news and lots more! 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Hi Tony, Shantell's always had trouble with her sinuses. She's had two sinus surgeries, and they went right back to being filled up within a week the first time and a couple of weeks the second time (which was more extensive)! She said no more. She found a good ENT who suggested a new treatment that she's been doing now for about 10 months. I've never seen her so healthy, and feeling so good (knock on wood). You may want to check with your doctor, of course. She has pseudomonas in her sinus cavities, so you will need to find out what he is growing. She takes a disposable 16 ml syring with sodium chloride solution (for lubrication) and Gentymycin (antibiotic). Since the syringes are disposable, it prevents any reinfection that you might get if using something such as the Water Pik (recommended here by the CF Center). You can ask about his, it is working for us! Oh, by the way, Welcome! FG, mom of Shantell 19yr wcf polyps I think the most difficult thing for my son to handle is the polyps in his sinuses.They make it difficult for him to breathe and it is painful when he has them removed as it cant be done under anaesthetic. Has anyone any thoughts how polyps can be controlled..I expect taking medication to keep the mucus level down is the obvious answer...but is there any more natural way ? Tony father of Ned aged 21 _____________________________________________________________________________ http://messenger.yahoo.com.au - Yahoo! Messenger - Voice chat, mail alerts, stock quotes and favourite news and lots more! 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 --- Gray wrote: <HR> <html><body> <tt> <BR> Hi Tony,<BR> <BR> Shantell's always had trouble with her sinuses. & nbsp; She's had two sinus <BR> surgeries, and they went right back to being filled up within a week the first <BR> time and a couple of weeks the second time (which was more extensive)! & nbsp; She <BR> said no more. & nbsp; She found a good ENT who suggested a new treatment that <BR> she's been doing now for about 10 months. & nbsp; I've never seen her so <BR> healthy, and feeling so good (knock on wood). & nbsp; You may want to check with <BR> your doctor, of course. & nbsp; She has pseudomonas in her sinus cavities, so you <BR> will need to find out what he is growing. & nbsp; She takes a disposable 16 ml <BR> syring with sodium chloride solution (for lubrication) and Gentymycin <BR> (antibiotic). & nbsp; Since the syringes are disposable, it prevents any <BR> reinfection that you might get if using something such as the Water Pik <BR> (recommended here by the CF Center). & nbsp; You can ask about his, it is working <BR> for us! & nbsp; Oh, by the way, Welcome!<BR> <BR> FG, mom of Shantell 19yr wcf<BR> Thanks for that . Ned has had polyps ever since he was very young(surprising doctor didnt make connection to CF). In fact the first time he went to the doctor I was very relieved they were polyps. Our GP sent us up to have an xray thinking there could have been a cancerous growth. After the xray I sensed some urgency from the radiologist. He made an immediate appointment with the ENT who in turn booked Ned into hospital the next day for an operation. I cried tears of joy when the doctor came out of surgery carrying a bottle with a huge polyp in it! And yes, Neds polyps of course keep coming back Tony _____________________________________________________________________________ http://messenger.yahoo.com.au - Yahoo! Messenger - Voice chat, mail alerts, stock quotes and favourite news and lots more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 --- Gray wrote: <HR> <html><body> <tt> <BR> Hi Tony,<BR> <BR> Shantell's always had trouble with her sinuses. & nbsp; She's had two sinus <BR> surgeries, and they went right back to being filled up within a week the first <BR> time and a couple of weeks the second time (which was more extensive)! & nbsp; She <BR> said no more. & nbsp; She found a good ENT who suggested a new treatment that <BR> she's been doing now for about 10 months. & nbsp; I've never seen her so <BR> healthy, and feeling so good (knock on wood). & nbsp; You may want to check with <BR> your doctor, of course. & nbsp; She has pseudomonas in her sinus cavities, so you <BR> will need to find out what he is growing. & nbsp; She takes a disposable 16 ml <BR> syring with sodium chloride solution (for lubrication) and Gentymycin <BR> (antibiotic). & nbsp; Since the syringes are disposable, it prevents any <BR> reinfection that you might get if using something such as the Water Pik <BR> (recommended here by the CF Center). & nbsp; You can ask about his, it is working <BR> for us! & nbsp; Oh, by the way, Welcome!<BR> <BR> FG, mom of Shantell 19yr wcf<BR> Thanks for that . Ned has had polyps ever since he was very young(surprising doctor didnt make connection to CF). In fact the first time he went to the doctor I was very relieved they were polyps. Our GP sent us up to have an xray thinking there could have been a cancerous growth. After the xray I sensed some urgency from the radiologist. He made an immediate appointment with the ENT who in turn booked Ned into hospital the next day for an operation. I cried tears of joy when the doctor came out of surgery carrying a bottle with a huge polyp in it! And yes, Neds polyps of course keep coming back Tony _____________________________________________________________________________ http://messenger.yahoo.com.au - Yahoo! Messenger - Voice chat, mail alerts, stock quotes and favourite news and lots more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 --- Gray wrote: <HR> <html><body> <tt> <BR> Hi Tony,<BR> <BR> Shantell's always had trouble with her sinuses. & nbsp; She's had two sinus <BR> surgeries, and they went right back to being filled up within a week the first <BR> time and a couple of weeks the second time (which was more extensive)! & nbsp; She <BR> said no more. & nbsp; She found a good ENT who suggested a new treatment that <BR> she's been doing now for about 10 months. & nbsp; I've never seen her so <BR> healthy, and feeling so good (knock on wood). & nbsp; You may want to check with <BR> your doctor, of course. & nbsp; She has pseudomonas in her sinus cavities, so you <BR> will need to find out what he is growing. & nbsp; She takes a disposable 16 ml <BR> syring with sodium chloride solution (for lubrication) and Gentymycin <BR> (antibiotic). & nbsp; Since the syringes are disposable, it prevents any <BR> reinfection that you might get if using something such as the Water Pik <BR> (recommended here by the CF Center). & nbsp; You can ask about his, it is working <BR> for us! & nbsp; Oh, by the way, Welcome!<BR> <BR> FG, mom of Shantell 19yr wcf<BR> Thanks for that . Ned has had polyps ever since he was very young(surprising doctor didnt make connection to CF). In fact the first time he went to the doctor I was very relieved they were polyps. Our GP sent us up to have an xray thinking there could have been a cancerous growth. After the xray I sensed some urgency from the radiologist. He made an immediate appointment with the ENT who in turn booked Ned into hospital the next day for an operation. I cried tears of joy when the doctor came out of surgery carrying a bottle with a huge polyp in it! And yes, Neds polyps of course keep coming back Tony _____________________________________________________________________________ http://messenger.yahoo.com.au - Yahoo! Messenger - Voice chat, mail alerts, stock quotes and favourite news and lots more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Tony why can't it be done under anasthesia? Unless its his lung status and they are worried about resp. complications, I cannot figure out why. Both and Mallory have had sinus surgery and polyps removed.....and always they were under general. I assume he is already on flonase or some sort of nasal steroid to prevent re-growth? Take care, Jen Mommy of 7, including ph 2 with CF, Mallory 3 with CF, RAD, GERD, OSA, port-a-cath; 5 with CF, port-a-cath; 7, Miranda 9, Mollie 8 with Type 1 diabetes (juvenile diabetes) ; Madison 5 yo ; also aunt to 4 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Tony why can't it be done under anasthesia? Unless its his lung status and they are worried about resp. complications, I cannot figure out why. Both and Mallory have had sinus surgery and polyps removed.....and always they were under general. I assume he is already on flonase or some sort of nasal steroid to prevent re-growth? Take care, Jen Mommy of 7, including ph 2 with CF, Mallory 3 with CF, RAD, GERD, OSA, port-a-cath; 5 with CF, port-a-cath; 7, Miranda 9, Mollie 8 with Type 1 diabetes (juvenile diabetes) ; Madison 5 yo ; also aunt to 4 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Tony why can't it be done under anasthesia? Unless its his lung status and they are worried about resp. complications, I cannot figure out why. Both and Mallory have had sinus surgery and polyps removed.....and always they were under general. I assume he is already on flonase or some sort of nasal steroid to prevent re-growth? Take care, Jen Mommy of 7, including ph 2 with CF, Mallory 3 with CF, RAD, GERD, OSA, port-a-cath; 5 with CF, port-a-cath; 7, Miranda 9, Mollie 8 with Type 1 diabetes (juvenile diabetes) ; Madison 5 yo ; also aunt to 4 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2001 Report Share Posted July 16, 2001 try it and see if it will work for you. just like pulmozyme , it don't work for all kids. chris On Mon, 16 Jul 2001 12:26:20 EDT, cfparents wrote: > Jen, > Our CF doctors tell me that flonase does not help CF polyps. But our ENT says > they do. So who do you listen too? Deb _______________________________________________________ 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 July 16, 2001 Report Share Posted July 16, 2001 VERY TRUE! Cody has been on Flonase since his first sinus surgery when he was 13 months old, and it has never really done a whole lot. They did try him off of it, and he got very stuffed up--seems to more help his allergies than preventing/helping polyps--BUT, his ENT says it does do that for many of the CF patients he sees. And as far as Pulmozyme goes, they started Cody on it in July 2000. I took him off in February, because rather than see an improvement (which I didn't see how it could improve--his lungs are and were beautifully clear!), I saw him get worse--he coughed ALOT, but not productively. Then he began to have just a small amount of blood in his sputum when he would manage to get anything up. I decided on my own to take him off of Pulmozyme (he had a doctor appt. in 3 weeks), and see how it went. Didn't take but a couple days and his coughing completely stopped, along with the bleeding. After seeing the docs and talking to the CF pharmacy specialist about it, they agreed--turns out that if there is nothing in the lungs for the Pulmozyme to work on, it begins to irritate the lung tissue (as it is a kind of " enzyme " of sorts). Don't know if that's what they'd really call it, but it has similar properties. So, as said, not everything works for everybody. , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Re: polyps try it and see if it will work for you. just like pulmozyme , it don't work for all kids. chris On Mon, 16 Jul 2001 12:26:20 EDT, cfparents wrote: > Jen, > Our CF doctors tell me that flonase does not help CF polyps. But our ENT says > they do. So who do you listen too? Deb _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2001 Report Share Posted July 17, 2001 We have been using it but we are going in for our second surgery on the 27 of this month. Deb Quote Link to comment Share on other sites More sharing options...
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