Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 , For almost 8 years I heard the beat up drum of allergens causing a sinusses problem. Until it started hurting her lungs, that was diagnosis time for us. You are way ahead of the game, make sure that the nose is taking care of, otherwise his lungs will be next. Be relentless, unfortunately, I was not, it is imperative that his sinus problem is controled some how, I wish I knew better, but you know the old cliche " you live and learn " . > Hi all, How is everyone? I have a few questions about sinus problems. > is back on Cipro again due to snottyiness, is that a real word =).We went > back to the pulmonogolist because he was on cipro for two weeks but he was still > having the wet cough, especially at night and the other snotty issues. > pfts were very good, his dr said that this was the best pfts ever since > starting the pft test. 's lungs are good, Thank goodness! But he said right > now we are dealing with sinus issues, his doctor wants to hold off with going > to an ENT because he said they would do the same thing by putting him back on > to cipro and the second thing that they would want to do surgery if it > continues. His pulm Dr. told me that if continues to have more sinus issues > then we would address it. So here are my questions. What exactly are the signs > of sinus issues. constantly has a runny nose. we were told that is > due to allergies. I want to know what to look for. Thanks for all the advice > given. > , mommy of 5 years old w/cf/adhd and 2 years old no cf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 My son has similar issues. I have however scheduled to see an ENT. How does your doctor know what the ENT will say/do? What exactly is your doc's specialty? Do you have an HMO or PPO (is he trying to save $$$)? Not exactly sure what the signs of sinus issues are - but going with my gut and seeing an ENT... Christen mom to 4 wcf & Peyton 5 mos no cf > Hi all, How is everyone? I have a few questions about sinus problems. > is back on Cipro again due to snottyiness, is that a real word =).We went > back to the pulmonogolist because he was on cipro for two weeks but he was still > having the wet cough, especially at night and the other snotty issues. > pfts were very good, his dr said that this was the best pfts ever since > starting the pft test. 's lungs are good, Thank goodness! But he said right > now we are dealing with sinus issues, his doctor wants to hold off with going > to an ENT because he said they would do the same thing by putting him back on > to cipro and the second thing that they would want to do surgery if it > continues. His pulm Dr. told me that if continues to have more sinus issues > then we would address it. So here are my questions. What exactly are the signs > of sinus issues. constantly has a runny nose. we were told that is > due to allergies. I want to know what to look for. Thanks for all the advice > given. > , mommy of 5 years old w/cf/adhd and 2 years old no cf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi , My daughter age 20 has had many sinus problems and 13 surgeries for polyps and just being impacted. Signs of sinusitis are kind of hard to pin point. He might have circles under his eyes, headaches, and like you say snotty. Press gently around his eyes and if any areas are tender that may mean infection. But with little kids they don't always have this or headaches. I don't think you should be afraid of seeing an ENT. If he needs surgery it isn't the worst thing. You don't want to let it go as it can even go so far as to infect the bone around the eye socket. I have heard of that happening to someone on here or on cystic-l. I would go ahead and get the CT scan and see how bad it is. The surgery isn't bad, they do it endocopically and there isn't too much discomfort afterwards. It seems like the younger kids do better. Anyway, this is just my opinion, take it or leave it. Oh I forgot to ask, is he on any steroid nasal sprays like flonase? Those and saline sprays can help. You do the saline, then have him try and blow his nose (if he can), then use the steroid. If he isn't on anything , ask your dr. good luck, love, M mom of Nick age 21 nocf and age 20 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 In a message dated 2/11/2004 11:50:43 PM Eastern Standard Time, christen_28@... writes: > I have however scheduled to see an ENT. > How does your doctor know what the ENT will say/do? The ENT might require a cat scan of sinus's to see whats going on inside. My guys have visible nasal polps - they look like little moles - pockets of flesh hanging from top of nostril and are visible to eye (NOW) which is why he needs surgery. Also, my children tend to get dark circles (from congestion, bad breath, backdrip kind of cough - not productive). Normal course of treatment we seem to get is a nasal spray and augmentin for at least 3 weeks - since sinus' are SO difficult to penetrate. I have AETNA - HMO....... Rosemary in NY with 3 children (13, 11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " my new favorite quote is Any idiot can face a crisis - it's day to day living that wears you out. Anton Chekhov Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 < Also, my children tend to get dark circles (from congestion, bad breath, backdrip kind of cough - not productive). Normal course of treatment we seem to get is a nasal spray and augmentin for at least 3 weeks - since sinus' are SO difficult to penetrate. > My son symptoms are all sinus related. He seems to have a sinus infection from Nov to April - no kidding. He had two surgeries last year for nasal polyps. He has been on Ceftin for most of the winter. As soon as he goes off, it comes right back. Currently the CF doctor wants us to do nasal lavage (nasal rinsing) 2x daily after a couple of squirts of Afrin. Afrin can only be used for a short period of time. Tyhe CF doc has threatened IV antibiotics if we can't get this gone. My son also sees his ENT eveyr two weeks to have the sinus cavities vacuumed out. Symptoms can be sounding " nasally " , green/yellow gunk coming out of the nose, raccoon eyes, sour stomach (from swallowing mucus), a tickle type of cough which may go away when chewing gum or sucking on hard candies. My son always gets a sickly sweet smelling breath that almost knocks you over if you get close when his infection is very bad. Headaches especially around the eyes or behind the nose. Nasal rinsing can really help so if you haven't tried it yet you may want to ask the CF doc about it. I would not hesitate to get a referal to an ENT. He is one of most often used resources to get his sinuses managable. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 My son as well has had very bad sinuses from the time he was 4 years old. At one of the conferences I went to I talked with a outstanding ENTand this is what she told us to do. She said they need to be doing some sort of rinsing or flushing of the sinuses daily to keep things moving. She recomended the Rhinflow. You do not need a script and you can buy it for like 175.00 online. We have been using this for about 3 years now twice a day. It is not invasive and I boil the parts along with our pari nebs twice a day too. We also got a script for sterile water. I get like 17 bottles of 500ML of sterile water from the pharmacy a month. We mix 2 tsp of sea salt and 1/2 tsp. of baking soda and shake it up and let it dissolve. We keep it in the fridge for only 24 hrs. then pitch it so it cannot grow anything. He does this night and day. You can also put tobramyicin through it with a syringe -mixing it with sterile water for the real nasty infections. This is why I like it so well. It is not a cure all, but it helps. She was adement on not to ever use TAP WATER as it has Psuedomonas in it. He has had two sinus surgeries and right now his sinuses are starting to be yuccky again. I hope we are not headed there. My advise to anyone would be to only get an ENT who does peds and especially knows CF. There is nobody here in Reno who is cappable of this, so my insurance now pays for us to go to Stanford to see an ENT. It is 5 hrs. one way, but worth the drive. The first sinus surgery here was a joke. The second one was done at Stanford in 02. They have an instatrak CT scan that is incredible- where he had to wear a helmet. It took 2 1/2 hrs., then they put catheters in his nose and we flushed tobramyicin through them until they fell out. I hope this helps anyone as I did not know who to turn to until I talked with this Doctor to seek advise. I know we are all tired of fighting with insurances, HMO's, referrals, and pharmacy's, but finding good care is worth it. Darci son of 9 1/2 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 my 16 son wcf has had several sinus surgeries plusmany new openings added to them to help in drainage- atduke , there is a great ent that wordks closely with the cf dr. on those with cf---- another helpful suggetion is a water pick/ used on the teeth. the force is greater than usinga seringeand can get further into the sinus cavity where most of the gunk grows Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Hi - I have just been catching up and noticed your post regarding sinus issues. I completely agree with everyone so far who has encouraged you to consult with an ENT. The best course of action is for the ENT and the pulmonologist to work closely together of course, so you might start by asking your cf doc to recommend someone who he/she trusts as far as having experience with people with cf. If the pulmonologist is still reluctant, be persistent and say that you insist. Previous posters are right- if the sinus issues are not dealt with they will most definitely migrate to the lungs at a later time. Besides that, your child will be so much more comfortable breathing when symptoms can be dealt with. As someone mentioned- a sinus CT will tell much of what is going on- sometimes they like to suggest a sinus x-ray- pretty much worthless. While it is true that it is very difficult for antibiotics to reach the sinuses effectively, that doesn't mean they don't work at all. It might take a couple of different ones, or perhaps IV antibiotics, but it is worth exploring. The sinus irrigation with a hypertonic saline solution really is helpful to reduce irritation/inflammation in the sinuses. We use a 3:1 solution of 3T kosher salt, 1T baking soda and a quart of sterile water. My son is about to go into the hospital Tues for his second sinus surgery and IV clean out. While we are certainly not looking forward to it, we are dearly hoping he will get some relief. Good luck, we'll be thinking of you. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 > with the cf dr. on those with cf---- another helpful suggetion is a water > pick/ used on the teeth. the force is greater than usinga seringeand can get > further into the sinus cavity where most of the gunk grows Hi- I forgot to mention we use something called a Neti Pot to irrigate the sinuses with the salt water solution. It was recommended by our ENT and according to him also gets into the sinus cavities better than the standard syringe. It can be found at health food stores. Debi Quote Link to comment Share on other sites More sharing options...
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