Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 , sorry, no articles here though, Orenstein does touch on it in his new book Medical care. We do have some personal experience, though. has terrible sinuses, though some of his is infection and some is polyps. He had sinus surgery at 33 months of age, and that helped for about six months but slowly the polyps and the sinuses got bad again. We did a tuneup in May (21 day) for the sinuses, and that helped alot, we were actually shocked at the difference in him! He is starting to dwindle again now, though, so I am starting to get the impression that surgery or tuneups, either one, for sinuses only seem to work around 6-9 months, or at least that seems to be the case with . Mallory also has lots of sinus gunk, but we don't think she has the complete opacification that JOshua's has (and his involves the osteomeatal complexes and some other stuff, too), so even though she is actually MORE symptomatic than him, hers seems to be more infection related and his just horrible sinuses. Actually, even ph has a constant stuffed up nose. Maybe it just goes with the territory? I am not even sure anymore when you call something a sinus infection, versus just bad sinuses in general...... Take care and good luck. Have they done a sinus CT? Jen Mommy of 7, including ph 16 months with CF, Mallory 3 with CF, RAD, GERD, OSA, new port-a-cath; 4 with CF; 6, Miranda 8, Brittany 7 yo foster daughter soon to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us also ; also aunt to 3 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Jen When was six month, he had a sinus infection that ate through the bone and got behind his eye. They called it periorbital cellulitus. It was extremely rare for a child his age to get it and we were told on tuesday that recurring sinusitis isn't too common in his age. He doesn't have any bone btween his eye and sinus cavity (gross sounding i know). He had everyone baffled as to why he got it. It was strange too. He hadn't been sleeping well, so we took him in to his family dr. They looked him over and said he was fine. On that thursday, my husband got up with him at one a.m. All was fine. When he got up at five, his left eye was almost swollen shut. We took him to the dr again and they thought it was pink eye. They put him on antibiotics and sent us home. That night, his fever rose and he didn't sleep at all. I called the dr first thing and took him in. When we finally got the ct scan and they found out what it was, we were sent down to the cf clinic in Denver right away. At the time of surgery, he was listless and had a temp of over 104. He was in pain too. Since then, the dr's here don't take any chances and treat it if there are signs of any infection. Because of these quick responses, we haven't done a ct since the first incident. They don't want to ever wait until it blows up like it did. mom to 15mo wcf and Brenna 5yr wocf >From: ron88jen@... >Reply-To: cfparentsegroups >To: cfparentsegroups >Subject: Re: sinusitis >Date: Sat, 14 Oct 2000 17:49:36 EDT > >, >sorry, no articles here though, Orenstein does touch on it in his new book >Medical care. >We do have some personal experience, though. has terrible sinuses, >though some of his is infection and some is polyps. He had sinus surgery >at >33 months of age, and that helped for about six months but slowly the >polyps >and the sinuses got bad again. We did a tuneup in May (21 day) for the >sinuses, and that helped alot, we were actually shocked at the difference >in >him! He is starting to dwindle again now, though, so I am starting to get >the impression that surgery or tuneups, either one, for sinuses only seem >to >work around 6-9 months, or at least that seems to be the case with . >Mallory also has lots of sinus gunk, but we don't think she has the >complete >opacification that JOshua's has (and his involves the osteomeatal complexes >and some other stuff, too), so even though she is actually MORE symptomatic >than him, hers seems to be more infection related and his just horrible >sinuses. Actually, even ph has a constant stuffed up nose. Maybe it >just goes with the territory? I am not even sure anymore when you call >something a sinus infection, versus just bad sinuses in general...... >Take care and good luck. Have they done a sinus CT? >Jen > >Mommy of 7, including ph 16 months with CF, Mallory 3 with CF, RAD, >GERD, >OSA, new port-a-cath; 4 with CF; 6, Miranda 8, Brittany 7 yo >foster daughter soon to be adopted by us; ERica 4 yo foster daughter, soon >to >be adopted by us also ; also aunt to 3 yo with CF _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Gosh , that is terrible. Of course, now you have me thinking...we have been thinking its too soon to get another CT on , his last one was in April before the tuneup. Maybe we should....and make sure that it hasn't spread farther. The only thing his CT scan showed he didn't have was deviated septum and concha bullosa, whatever that is. The other stuff, he had, involvement of the findubula or something like that, and the osteomeatal complexes, and both maxilary and ethmoid sinuses. Gosh, bless your heart!!!!! Hope that he gets better!!!! What drugs do they treat with? That is a constant problem...for us, at least, it seems that oral antibiotics don't touch the sinuses. Does he have pseudo? Take care, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 jen It was hard. They sent him home on home iv. I remember one was clyndamyacin and one of the others was rocephin. after three weeks they switched him to oral. He grew immune to bactrim, so they have been treating the infections with augmentin. Now they'll use keflex, but only as a preventative. Like I said, thay haven't done a ct since the first infection. I think they don't want it to blow up again like it did. >From: ron88jen@... >Reply-To: cfparentsegroups >To: cfparentsegroups >Subject: Re: sinusitis >Date: Sun, 15 Oct 2000 01:39:02 EDT > >Gosh , that is terrible. Of course, now you have me thinking...we >have been thinking its too soon to get another CT on , his last one >was >in April before the tuneup. Maybe we should....and make sure that it >hasn't >spread farther. The only thing his CT scan showed he didn't have was >deviated septum and concha bullosa, whatever that is. The other stuff, he >had, involvement of the findubula or something like that, and the >osteomeatal >complexes, and both maxilary and ethmoid sinuses. >Gosh, bless your heart!!!!! Hope that he gets better!!!! >What drugs do they treat with? That is a constant problem...for us, at >least, it seems that oral antibiotics don't touch the sinuses. Does he >have >pseudo? >Take care, >Jen _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 Well, all I have is my experience as a patient. There are articles in Cell, Jama, New Science (UK), etc., but basically what it comes down to is an approach first initiated a few years ago by several cf ENT experts who did 1)sinus surgery, clearing the sinuses, and enlarging the windows at the top of the nose bridge; 2)monthly suctioning of the frontal and maxilary, especially the latter, sinuses with infusion of about 3cm of Tobramycin and 3)often use of a cortico-steroid nasal spray daily in between, possibly with Afrin used to shrink the tissue before the infusion through a small catheter into the sinuses. 4) This usually is followed by suctioning of ears as well unless tubes have been placed. This usually enables the patient to breathe through the nose, to have less infection and less pain, less post-nasal drip, and most important of all, fewer and less severe lung infections. Whew! Thats my big post for the day! I hope it helps, n wcf and mom of 3, 1 w cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 My 2 yr old son had bad sinus problems while in day care. I think the combination of keeping him home and getting a vacuum with a HEPA filter ( 10 months ago) have made a tremendous difference in his infection rate. Allergist said the brand and cost don't matter, just make sure it says HEPA. Allegerist also recommended a mattress cover to eliminate dust mites (irritant for sinus trouble). ENT said there is an aggressive sinus surgery to open up the passages that he has done for a cf'er. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 Thanks Dawn. We have had a vacuum with the HEPA filter for over a year now. I wish his were lessened by what we do. They always come at no particular time of year. That's the bad thing. The cf dr's have put him on six months of oral antibiotics tp try and lessen the occurances. mom to 16mo wcf and Brenna 5 years wocf >From: cysticegroup@... >Reply-To: cfparentsegroups >To: cfparentsegroups >Subject: Re: sinusitis >Date: Thu, 9 Nov 2000 07:32:13 EST > >My 2 yr old son had bad sinus problems while in day care. I think the >combination of keeping him home and getting a vacuum with a HEPA filter ( >10 >months ago) have made a tremendous difference in his infection rate. >Allergist said the brand and cost don't matter, just make sure it says >HEPA. >Allegerist also recommended a mattress cover to eliminate dust mites >(irritant for sinus trouble). >ENT said there is an aggressive sinus surgery to open up the passages that >he >has done for a cf'er. >Dawn _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
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