Nasal congestion or something else?

[belinda]

My cf/son (4 months old) has had sinus congestion for a week now. Per advise of my clinic and his primary peditrican, saline drops help clear it up. A cool mist humdifier at night has also been recommended which I have seen some small improvement from. The primary peditrican said he has a cold. MY QUESTION: Are these the right things that I am doing? Is there any advice as to something else I can be doing to help clear this up? Shouldn't it be gone? Or is this a sign of something else?
Any help would be great. Thanks..

 

[anonymous]

Just be persistant with your doctors!! If you are thinking it is more than a cold trust your gut! I recently had this same question about two weeks ago on a post about my 3.5 month old (read cough with congestion...help post) She had a cough and congestion for a month. During that time i took her to the cf cliinc 2x and my pediatrician twice. It got so bad that she was throwing up because she was choking on her phlegm. She started sleeping through the night which i thought was awesome, but it was because she didn't feel good and didn't want to eat. She lost a pound in a week! They kept saying it was not in her lungs, which was great but it just did not feel right. Thankfully she didn't develop any lung issues like pneumonia, but she was admitted into the hospital for iv antibotics due to a very bad sinus infection.
Back to your question, we did saline drops and put a pillow UNDER the mattress to elevate her head, but nothing helped it just got worse. I also gave her cold medicine, but found out later not to due to the mucus factor in cf. Just keep on top of it and keep calling your cf team. I know it is frustrating not knowing what it is especially with such a little baby. Don't let it go past a couple of weeks i feel like if i would have waited any longer it would have turned into something terrible!

Blythe
mom to Brinly /cf and Birgess w/out cf

 

[anonymous]

Thanks for your reply to both my questions. It is very upsetting to see him suffer. Last night he slept much better. I elevated his whole body. I am still nursing so it doesn't help that he is waking up every hour to 2 hours to eat. I have heard how painful IV antibiotics can be for children. As a mom, how did you handle the pain your child went through?
thanks.. I copied your email for futher use, thanks again.

 

[anonymous]

Who recommended to you to use the humidifier?? I thought that it is not a good idea to use one with cfers. I think it is because mold/bacteria can grow in the sitting water. I know my daughter's pediatrician recommended we use one when she was an infant, then I later learned it wasn't a good idea.

From what I have learned from my children (three-years old and a one-year old both with cf) is that they will get cold like all kids. They seem to last "forever" but within a week or two they start to get better and they do not need antibiotics or even visit a doctor. I get concerned about a lung infection when they seem to have trouble breathing. Watch for retractions (skin pulling in ) around their neck and chest. Also, when they are coughing at night while they sleep. My three-year-old daughter seems to get at least four colds a year but has only needed antibiotics twice in her life.

Regarding your question about watching your children in pain. Fortunately, it hasn't been very often. It seems to be only when they are in the hospital (twice for both of them). I am amazed at how I am able to easily cope with it. I guess I just focus on how important it is for them to get the IV, etc. and I am very thankful that we have the medical procedure/technology to keep them healthy.

Hope your son feels better soon. If you are at all concerned you should bring in your son to his doctor to make sure his chest is still clear.
Sharon

 

[anonymous]

Not sure if this helps but this is my story. When my son was diagnosed with CF (age 3) and they ran all the post-diagnosis tests, we learned that his sinuses were inflamed. I always thought his loud snore was an endearing quality that made me smile, but never dreamed it was a sign of something more. Anyway, he has been taking Flonase for almost a year now and I almost immediately noticed the difference - no more snore! When he gets a cold and starts coughing a lot at night, either me or my husband sneak in and give him some Albuterol Sulfate via "blowby" and that usually seems to help. When our cf kids get a cold, it is just going to linger around longer.

Jena

 

[anonymous]

Like the earlier post said, stay persistent with your pulmonologist. i would not even check in with your primary pediatrician when your son is sick with a cold. I made the mistake of calling my son's primary ped. when my son came down with what he thought, was a "really bad cold-probably a virus" when my son was 11 months old. Well, needless to say, my son ended up at the UW hospital for 2 wks. with pseudomonas. He had his first ambulance ride when he was 11 months old because i failed to, along with his primary ped., keep his cf doc updated. Believe me, i learned my lesson real fast. Now when my son gets a cold, i call the cf clinic and completely bypass going through my son's primary ped. Just remember that the primary ped. isn't specialized in pulmonology like your cf doc is . good luck

Jodi - Mom of Tucker w/cf

 

[Mantaray]

Bronchitis usually follows sinus congestion if it is not well cured. It is very important to clear sinuses correctly to avoid complications. Clean regularly your son's nose with saline solution, or better with xylitol solution, several times a day, and he should avoid IV antibiotics.
Good luck !

 

[Chibble]

<img src="i/expressions/face-icon-small-cool.gif" border="0">Hi. I have two teens w/cf and 1 w/o. In my experience all kids get a stuffy nose. As a matter of fact my kid that did not have cf got the most stuffy noses. Ask your pediatrician about Otrivin nose drops for babies. they are over the counter. Worked great for all my kids.Some things are just gonna happen when you have a baby, not necessarily cf related. BTW, enjoy your baby, they grow up too fast!