Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I know probiotics are debated here and there is a risk but these http://www.amazon.com/Jarrow-Formulas-Sacharomyces-Boulardii-Capsules/dp/B0013OV\ W0E/ref=wl_it_dp_o?ie=UTF8 & coliid=I3FLYSKHS7R40U & colid=1RUGACZMEM75G is well known to work well for wiping out c.diff. We've been using probiotics and have noticed a reduction in both GI bugs and constipation and tummy aches so for us the risk is worth it. Anyway, read the reviews, a few are from people who kept getting the c.diff until they started using the stuff. 10 CVID (yes the Dr knows she's on the probiotics, he didn't seem to have an opinion when asked) ________________________________ From: sievertlaura <sievertlaura@...> Sent: Thu, February 17, 2011 6:49:43 AM Subject: Sinusitis and C. Diff Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! Tate 13-year-old CVID ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I know probiotics are debated here and there is a risk but these http://www.amazon.com/Jarrow-Formulas-Sacharomyces-Boulardii-Capsules/dp/B0013OV\ W0E/ref=wl_it_dp_o?ie=UTF8 & coliid=I3FLYSKHS7R40U & colid=1RUGACZMEM75G is well known to work well for wiping out c.diff. We've been using probiotics and have noticed a reduction in both GI bugs and constipation and tummy aches so for us the risk is worth it. Anyway, read the reviews, a few are from people who kept getting the c.diff until they started using the stuff. 10 CVID (yes the Dr knows she's on the probiotics, he didn't seem to have an opinion when asked) ________________________________ From: sievertlaura <sievertlaura@...> Sent: Thu, February 17, 2011 6:49:43 AM Subject: Sinusitis and C. Diff Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! Tate 13-year-old CVID ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 when my sons got BAD they had us purchase a groshen pump that is used for sinus rinises. WE used pulmicort ( inhaled) in his rinses 2 x a day. It allowed the tissue to be clearly daily as well as it allowed the tissue to begin healing without using oral prednisone. We also used IV antibiotics for 6 weeks. This was over 5 years ago and he is doing well. BARBIE ________________________________ From: sievertlaura <sievertlaura@...> Sent: Thu, February 17, 2011 6:49:43 AM Subject: Sinusitis and C. Diff Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! Tate 13-year-old CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 when my sons got BAD they had us purchase a groshen pump that is used for sinus rinises. WE used pulmicort ( inhaled) in his rinses 2 x a day. It allowed the tissue to be clearly daily as well as it allowed the tissue to begin healing without using oral prednisone. We also used IV antibiotics for 6 weeks. This was over 5 years ago and he is doing well. BARBIE ________________________________ From: sievertlaura <sievertlaura@...> Sent: Thu, February 17, 2011 6:49:43 AM Subject: Sinusitis and C. Diff Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! Tate 13-year-old CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I would try a PICC line and IV antibiotics first. Ursula On Feb 17, 2011, at 9:49 AM, " sievertlaura " <sievertlaura@...> wrote: > Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! > > > Tate 13-year-old CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I would try a PICC line and IV antibiotics first. Ursula On Feb 17, 2011, at 9:49 AM, " sievertlaura " <sievertlaura@...> wrote: > Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! > > > Tate 13-year-old CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 my daughter had the sinus surgery at age 7. In her case we were at a point that it was life or death so not a choice. but... if I had it to do over again I think I would NOT have allowed it. Because she was so young it has effected her nose shape and picture profile as well as she has other side effects from the surgery in regards to swallowing etc. As I said before I would do IV antibiotics as well as rinses to clear things up and get a handle on it. It is my understanding that the surgeries really do not work over time and the scar tissue contines to cause problems and you have to keep having surgeries. BARBIE ________________________________ From: Ursula Holleman <uahollem@...> " " < > Sent: Thu, February 17, 2011 8:02:10 AM Subject: Re: Sinusitis and C. Diff I would try a PICC line and IV antibiotics first. Ursula On Feb 17, 2011, at 9:49 AM, " sievertlaura " <sievertlaura@...> wrote: > Tate continues to get recurrent sinusitis. His Hizentra has recently been >increased again. Unfortunately, each time we treat with any antibiotic, he is >ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse >than the C. Diff almost with its GI symptoms and was causing dizziness that >stopped when we stopped the drug. He is currently on a 21-day course of Bactim >(13 days completed), but sinuses and lymphadenopathy are not responding. >Unfortunately his gut did and today he has the typical explosive watery diarrhea >again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT >thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated >as this cycle has been in an endless loop since August. Thanks for any help in >advance! > > > Tate 13-year-old CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Are IV antibiotics less likely to cause the problems with C. Diff.? He is on probiotics at the recommendation of his immunologist, but it hasn't helped the last two times. He does use pulmicourt in his saline rinses twice a day. We haven't used any kind of pump to flush his sinuses before. Tate 13-year-old CVID > > > Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! > > > > > > Tate 13-year-old CVID > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hi , cdiff has been a scourge for my son ever since he was 3...I hate it! and it's dangerous, can cause necrotising colitis.....his GI dr was extremely concerned with his last bout last year....my son lost 15 lbs, at age16, went down to 86 lbs...  Flagyl never works with my son's cdiff....only oral Vancomycin.....this last bout, they pulsed it....there is research done about this and this is the best way to eradicate the spores.....see, with cdiff, they develop spores which " hide " from the antibiotic...so the most effective way to kill it is by " pulsing the vancomycin. " and this worked! At least for now...he was on it 6 weeks...pulsed....2 days on, one day off to allow the spores to hatch, then zap them with two more days.....this did the trick!  Hugs to you, I know cdiff is a really bad thing....Sue From: sievertlaura <sievertlaura@...> Subject: Sinusitis and C. Diff Date: Thursday, February 17, 2011, 2:49 PM  Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! Tate 13-year-old CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 oh.... and re probiotics....S.Boulardi is the only probiotic that actually can kill cdiff, it is the best probiotic to take when people have cdiff.....sue From: sievertlaura <sievertlaura@...> Subject: Sinusitis and C. Diff Date: Thursday, February 17, 2011, 2:49 PM  Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! Tate 13-year-old CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Yes IV does work MUCH better for the gut since it does not go directly on the lining of the gut. We find the pump to work better because it is a more consistent flow. Just keep it low flow so that you do not have too much pressure. Kids do not rinse well in my experience. Nor do adults without practice. I think my pump was about $100 and got it online. BARBIE ________________________________ From: sievertlaura <sievertlaura@...> Sent: Thu, February 17, 2011 8:12:49 AM Subject: Re: Sinusitis and C. Diff Are IV antibiotics less likely to cause the problems with C. Diff.? He is on probiotics at the recommendation of his immunologist, but it hasn't helped the last two times. He does use pulmicourt in his saline rinses twice a day. We haven't used any kind of pump to flush his sinuses before. Tate 13-year-old CVID > > > Tate continues to get recurrent sinusitis. His Hizentra has recently been >increased again. Unfortunately, each time we treat with any antibiotic, he is >ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse >than the C. Diff almost with its GI symptoms and was causing dizziness that >stopped when we stopped the drug. He is currently on a 21-day course of Bactim >(13 days completed), but sinuses and lymphadenopathy are not responding. >Unfortunately his gut did and today he has the typical explosive watery diarrhea >again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT >thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated >as this cycle has been in an endless loop since August. Thanks for any help in >advance! > > > > > > Tate 13-year-old CVID > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I really really have to second Ursula's thoughts.  Kate has twice had horrific sinus infections that failed multiple rounds of antibiotics (like 60+days of orals).  We finally went to the PICC line both times.  Both times it cleared it *these two times were 2 years apart, and I think the first time, she didn't get on a good preventative routine which is why I think she needed it a second time.  The last time she was in kinder, She's in 3rd grade now.  I HIGHLY recommend this option, provided that you get on a good sinus regimen following the PICC. My understanding with sinus surgery is, often, once you do it, you keep needing to do it.  Our ENT at UCLA would NOT do surgery on Kate or Charlie even with pansinusitis, because she said that it would just keep coming back within a short period of time because the problem is the bug you need to get rid of, not just the " junk " that needs to be cleared out of the sinuses.  Of course, that's one doctors opinion, at one place.  I wish I had more to add about the cDiff, I just don't know enough about it. If you want to chat, give me a call.  Dayna > Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! > > > Tate 13-year-old CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I think it is a more pervasive opinion but back 14 years ago when my daughter had pansinusitis and they found it in ethmoid sinuses that we had NO choice. Again I would have made another choice today. They have been back in 5 times in the past years (21 now) She has also grown polyps etc partly due to messing with the area. BARBIE ________________________________ From: Dayna Fladhammer <dfladhammer@...> Sent: Thu, February 17, 2011 9:51:35 AM Subject: Re: Sinusitis and C. Diff I really really have to second Ursula's thoughts. Kate has twice had horrific sinus infections that failed multiple rounds of antibiotics (like 60+days of orals). We finally went to the PICC line both times. Both times it cleared it *these two times were 2 years apart, and I think the first time, she didn't get on a good preventative routine which is why I think she needed it a second time. The last time she was in kinder, She's in 3rd grade now. I HIGHLY recommend this option, provided that you get on a good sinus regimen following the PICC. My understanding with sinus surgery is, often, once you do it, you keep needing to do it. Our ENT at UCLA would NOT do surgery on Kate or Charlie even with pansinusitis, because she said that it would just keep coming back within a short period of time because the problem is the bug you need to get rid of, not just the " junk " that needs to be cleared out of the sinuses. Of course, that's one doctors opinion, at one place. I wish I had more to add about the cDiff, I just don't know enough about it. If you want to chat, give me a call. Dayna > Tate continues to get recurrent sinusitis. His Hizentra has recently been >increased again. Unfortunately, each time we treat with any antibiotic, he is >ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse >than the C. Diff almost with its GI symptoms and was causing dizziness that >stopped when we stopped the drug. He is currently on a 21-day course of Bactim >(13 days completed), but sinuses and lymphadenopathy are not responding. >Unfortunately his gut did and today he has the typical explosive watery diarrhea >again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT >thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated >as this cycle has been in an endless loop since August. Thanks for any help in >advance! > > > Tate 13-year-old CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Have tehy tried IV Flagyl? It works better than the Oral...I would ask theDr. if doing the IV antibiotics could be done...Might bother you to ahve to do it, but they DO work....When Blake is on Antibiotics, they are always IV...Oral antibiotics sometimes need that extra boost to make the oral work. have they tried to culture what is in the sinuses...this will allow you and the Dr. know what it is sensitive to and get him on the RIGHT stuff......With Blake he is prone to sinusitis and lung infections as well as throat infections. He had been in the hospital for a week due to Peumonia....Strep Pneumacoccus NOT fun...they culture his sputum and this is what they found this time. maybe you cn get teh dr. to do a sputum test(has tocome from the back of the torat and the best time todo it is first thing in the morning. I am all for the Sinus rinces with Blake as well....but you NEED to know what is growing up there Sounds like alot, but in the end you, Tate and Dr. will be happy to know you did the best thing for Tate!!! Good Luck!!! S. Mom to Blake 19, SCID With Complete T-Cell Dysfunction, Autism, Factor V Lieden http://www.caringbridge.org/vist/thetalesofblake " Children are like butterflies in the wind. Some fly higher than others, BUT each one flies the best they can!!!! " From: sievertlaura <sievertlaura@...> Subject: Sinusitis and C. Diff Date: Thursday, February 17, 2011, 9:49 AM  Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! Tate 13-year-old CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Thank you for the opinions. They are playing right into my own bias which is keep a surgeon out as long as possible. We have been waiting two days to hear back from his immunologist since his pediatrician was unsure how to proceed. I stopped his Bactrim today, but left him taking the probiotics until I hear from one of his physicians. His ENT is very reasonable and always defers to his immunologist. We've never talked about sinus surgery but his immunologist pushed to get adenoids and tonsils out before so I wanted my opinion firm in my own mind. Thanks again for the help. Thank goodness for this group! > > > > > Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! > > > > > > > > > Tate 13-year-old CVID > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 The only thing I will moderate my opinion with is that a CLEAN OUT by doing a rinse of the sinuses is different. They do work under anesthesia. But SURGERY is referring to removing the dividers in the sinuses so that is different. Just wanted to clarify since when we have worked with a GREAT ENT he has been able to clear things without cutting. Just make sure you know what they are talking about. BARBIE ________________________________ From: sievertlaura <sievertlaura@...> Sent: Thu, February 17, 2011 11:18:37 AM Subject: Re: Sinusitis and C. Diff Thank you for the opinions. They are playing right into my own bias which is keep a surgeon out as long as possible. We have been waiting two days to hear back from his immunologist since his pediatrician was unsure how to proceed. I stopped his Bactrim today, but left him taking the probiotics until I hear from one of his physicians. His ENT is very reasonable and always defers to his immunologist. We've never talked about sinus surgery but his immunologist pushed to get adenoids and tonsils out before so I wanted my opinion firm in my own mind. Thanks again for the help. Thank goodness for this group! > > > > > Tate continues to get recurrent sinusitis. His Hizentra has recently been >increased again. Unfortunately, each time we treat with any antibiotic, he is >ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse >than the C. Diff almost with its GI symptoms and was causing dizziness that >stopped when we stopped the drug. He is currently on a 21-day course of Bactim >(13 days completed), but sinuses and lymphadenopathy are not responding. >Unfortunately his gut did and today he has the typical explosive watery diarrhea >again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT >thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated >as this cycle has been in an endless loop since August. Thanks for any help in >advance! > > > > > > > > > Tate 13-year-old CVID > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 The only thing I will moderate my opinion with is that a CLEAN OUT by doing a rinse of the sinuses is different. They do work under anesthesia. But SURGERY is referring to removing the dividers in the sinuses so that is different. Just wanted to clarify since when we have worked with a GREAT ENT he has been able to clear things without cutting. Just make sure you know what they are talking about. BARBIE ________________________________ From: sievertlaura <sievertlaura@...> Sent: Thu, February 17, 2011 11:18:37 AM Subject: Re: Sinusitis and C. Diff Thank you for the opinions. They are playing right into my own bias which is keep a surgeon out as long as possible. We have been waiting two days to hear back from his immunologist since his pediatrician was unsure how to proceed. I stopped his Bactrim today, but left him taking the probiotics until I hear from one of his physicians. His ENT is very reasonable and always defers to his immunologist. We've never talked about sinus surgery but his immunologist pushed to get adenoids and tonsils out before so I wanted my opinion firm in my own mind. Thanks again for the help. Thank goodness for this group! > > > > > Tate continues to get recurrent sinusitis. His Hizentra has recently been >increased again. Unfortunately, each time we treat with any antibiotic, he is >ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse >than the C. Diff almost with its GI symptoms and was causing dizziness that >stopped when we stopped the drug. He is currently on a 21-day course of Bactim >(13 days completed), but sinuses and lymphadenopathy are not responding. >Unfortunately his gut did and today he has the typical explosive watery diarrhea >again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT >thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated >as this cycle has been in an endless loop since August. Thanks for any help in >advance! > > > > > > > > > Tate 13-year-old CVID > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi, . I'm jumping in here late (I'm working from home and schooling full-time) and haven't been able to read all posts. My daughter had the same situation and ended up w/ lofe threatening infectious colitis. Here are a few things we learned along the way... - she is colonized w/ spores (many people are) and, to date, there is no way to eradicate them (or even test for them). This means that anytime there are favorable conditions for c.dif (such as antibiotics that throw off the " good " flora) we can expect a relapse. So, we chose to school from home to reduce risk of antibiotics. - IV antibiotics were no better for her than oral. - Flagyl wasn't effective for her due to her PID and fragility. Vanco worked and did not absorb beyond gut so was safer. - pulsing vanco didn't work for us because her immune system is not able to " catch up " and " learn " how to fight the bug. Pulsing is more effective if you have good memory B cells. - we have low T-cell function to yeast so our GI said " no " to s.boBulardii. This yeast has caused line infections in fragile patients. We used it for a few weeks before our GI took her off of it. Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ Sinusitis and C. Diff Tate continues to get recurrent sinusitis. His Hizentra has recently been increased again. Unfortunately, each time we treat with any antibiotic, he is ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse than the C. Diff almost with its GI symptoms and was causing dizziness that stopped when we stopped the drug. He is currently on a 21-day course of Bactim (13 days completed), but sinuses and lymphadenopathy are not responding. Unfortunately his gut did and today he has the typical explosive watery diarrhea again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated as this cycle has been in an endless loop since August. Thanks for any help in advance! Tate 13-year-old CVID Quote Link to comment Share on other sites More sharing options...
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