Constant Sinus Infection

[rosesixtyfive]

Hi, my son is 3 and has had a clear runny nose since December. He goes to clinic in a town two hours away every 3 months. His last visit was in March and he had lost weight due to the sinus problems. We didn't know if it was because he had started preschool or what was going on. Recently, he was referred to an ENT doctor, and what a jerk. As soon has he found out our child had CF, he started using phrases like "buying him time" and pretty much said that this was just how things were going to be for us. We are now in the process of going to a pediatric ENT in the town two hours away but it will be awhile before we get there. The bad ENT gave him Nasonex. We are using that and saline drops. We also do vest, hypertonic saline, and pulmozyme. We tried to due nasal rinses, but it seriously scared him too badly. It just didn't work for him. Please help and give advice. What can I do to help my child? When he is on antibiotics, the runny nose goes away, but he is not culturing anything. He feels too bad to eat and is losing wait. he is extremely irritable. I pray the ENT can help us so much, but what can we do to help his nose stop running? It is now a cough and it has never gotten down that deep before. Thanks in advance, rosesixtyfive, mother of Sam, 3 years old, DDF508

 

[rosesixtyfive]

Sinus problems are just part of CF. I get that, but what do you to fight it the best you can?

 

[amber682]

hopefully the new ENT can give you some answers but my kids have some sinus issues so maybe I can help a little in the meantime. Do you do nebs with masks so the medicine will get into his nose as well? My kids ENT said to do nasal spray and blow their nose lots, like 5-6 times a day. We tried flushes and rinses but it's quite a battle. They use simply saline because it's a nice fine mist, wait a couple minutes and have them blow. They have a perscription for atrovent nasal spray as well, when they get colds they got a lot of post nasal drip and it causes coughing at night, so they use it before bed. It dires up the mucus, maybe something like that would help? There was also a time where one of my kids was on an antibiotic nasal spray, wish I could remember what it was called but the pharmacy had to make it. Did the ENT scope his nose?

 

[Ratatosk]

DS' nasal mucus is so thick that his nose never ever runs. When he was a baby he had constant sinus infections until his doctor decided to prescribe a longer, stronger dosage of abx to get rid of it once and for all. He was concerned with the stuff getting into his lungs and making him sick. So 3 weeks instead of the usual 2 weeks of augmentin and if it wasn't gone, he was going to prescribe something else. Got ride of it. We messed around with saline drops until DS was about 4 when we convinced him to do sinus rinses. Couldn't believe the amount of crud that came out of his nose. In recent years, ds' nose got so stuffed up that he couldn't breathe through one nostril, sinus rinses didn't help. Concerned that it could be polyps, we asked his CF doctor to give us a referral to an ENT who was familiar wcf. A year ago we went to an appointment, they numbed ds' nose and scoped it, also ordered a sinus CT. While the scans showed typical sinus disease, the bigger issue was inflammation, no polyps, so nasonex was prescribed. Completely different child. He could finally breathe. He still has some issues, but he can finally breathe. My advice would be get a 2nd opinion, a doctor (ENT) who treats CF patients.

 

[AleksandraKaczynska]

hi - my daughter has the same prolem. Our cf doc gave us Nasonex -twice a day for a week and once for next 2 day -, safter doing sinus rinces... I guess you will have use salt spray, inhalations through mask or warm baths...and bactrim for 20 days. Her coulture was all physiological. He said that sinuses are a problem - esspecially iwith her muation - and that bactrim is used to clear out such thinks and is not so hard as augumentin or Zinnat - also used for sinuses. When Asia had her sinus infection what helped her was Zinnat, pectodrill and Pulneo.
But before doing this he made sure she had no alergies. If her test showed allergies (especially since it's all spring around and everything is pollen at once here)- she would not get bactrim but some setroids - I do not know what since we have no allergies.
I also have symptoms of allergic sinuse problems after that sinus infection (no allergies on tests) and so does my younger 2 year old. But we don't need nothing more then sinus rinces - cf kids need something more and longer.
We are after the first week and it's working - slowly the sinuses are getting better. However we are encouraged to do sinus rinces at least twice a day - best before inhalations and after school

 

[Kristan]

You might want to consider allergies. My youngest son (7 no CF) tested negative for environmental allergies, but has indications of having them. I now give him children’s allegra and Flonase and it makes a huge difference. Before whenever he got a cold, the chronic inflammation just extended the problem and we could never get rid of it. When he was 4 he also had his adenoids out.

 

[JENNYC]

Everyone had great info!! I just want to add that I would double check that the new ENT has dealt with CF patients before. Normally your clinic can refer you to one that many of their patients use that have actually dealt with CF before. Most CFer's at some point and time have seen an ENT for something. That makes a big difference!!! Good luck!!

 

[Ratatosk]

Everyone had great info!! I just want to add that I would double check that the new ENT has dealt with CF patients before. Normally your clinic can refer you to one that many of their patients use that have actually dealt with CF before. Most CFer's at some point and time have seen an ENT for something. That makes a big difference!!! Good luck!!

Exactly. Our CF doctor referred us to an ENT who specializes in CF care because all to often there's a tendency to do surgery after surgery. Our local cf doctor kept insisting DS had polyps and would need surgery, when it turned out it was major inflammation and was pretty much resolved with nasal steroids.

 

[Kaethe108]

Our daughter uses Nasonex everyday. It really helps.
You can take it without break. But at least six weeks before expecting benefit.