Need Help, Once again, I wasn't ready for this

[rosesixtyfive]

My 3 year old boy has kicked pseudomonas for two years. He just went off of Tobi and Cayston. Now, he has had a clear runny nose since December. He was on 21 days of Bactrim and was good during that time. The day that he went off, his nose started running again. Today, we saw the ENT for the first time. He told us that Sam would always struggle with this. That it was nasal polyps and inflammation. He said we would always just be deciding not if he needed sinus surgery, but when he had suffered long enough to merit the surgeries. And then told us that there was nothing, nothing we could do to prevent nasal polyps. Gloomy, right? Okay, I am willing to face the truth. Sinus problems are just part of CF, I just didn't know how awful it would be. He recommended adenoid surgery and a picc line. I was floored because I did not know that a picc line could be used for an infection in the nose. That kind of ruins summer because for 14 days we wont be swimming and doing the healthy things I want him to do. He saw we could wait until August or September, but now I feel terrible because if there is an infection living in my baby's nose, we need to get it out as soon as possible. So, here are my questions - Is 3 years old early for nasal symptoms like these? Have you ever had a picc line for an infection living in your nose, but your lungs seemed to be clear? How many surgeries a year do you usually have for your sinuses? Is there really no way to prevent nasal polyps? Is it just something we have to live with and treat retroactively instead of proactively? We can't do the sinus washes because it terrifies him. Normally, I'm for sitting on him and doing what needs to be done, but it was truly traumatic, so we are now using Nasonex and simply saline. Please help. Is three awfully young for a picc line? He had one at 5 months, but I don't know how he will handle it now. Thank you so, so much. rosesixtyfive, mother of Sam, 3 years old, DDF508, and a dd, 8 years old, no CF

 

[Lety]

My daughter had her adenoids, polyps and tonsils removed when she was 3 years old, it has been 4 years and polyps haven't come back. We just went to her check up and to ENT for severe allergies and no polyps were found. She has seasonal allergies. She is DDF508. not advice here but just wanted to share my experience with polyps.

 

[shelij]

I have 2 CF boys...12 and 6 years old. My oldest had severe nasal polyps and had them removed (along with adenoids and tonsils) when he was 3. He is almost 13 and his nose is beautiful...no polyp re-growth at all! I don't understand the picc line for nasal issues, but it may be just to ensure the infection doesn't move down into the lungs. He'll feel crummy for a few days and might not be able to sufficiently clear his lungs. I would recommend getting it done ASAP, it changed my son's life!! He slept better, was better able to fight lung infection, no longer snored, gained weight, etc....

 

[briarrose]

I have always had horrible sinus issues. (I'm a carrier, not someone with CF.) I had horrible polyps, deviated septum, etc. My doctor recommended surgery when I was about 15 or 16, but I was able to put it off until I was 24. I wouldn't recommend waiting as long as I did, but a couple of months might not be horrible. I felt a lot better when it was done, only have about one sinus infection a year now instead of the several I had before, but you might ask if you can wait until the end of nice weather to have the surgery so you can get a fun summer in.

 

[kosdancer]

I have nasal polyps for years. When I was 3 I got really, deathly ill and I had sinus windows surgery; after that I probably had another 25-30 surgeries, last one was in 2009. I think polyps are something that he may outgrow, may be something that he'll need to get removed once and never have another problem, or may get repeatedly. Though it may seem crazy, it wasn't THAT big of a deal. I had surgery every 3-9 months, I usually only missed 2 days of school and a week of physical activity. Never had a PICC connected to sinus surgery though, that does seem a little weird. You could always go for a second opinion. Many docs may not want to do repeated surgery or may not think that sinuses are an important component (or at least this used to be the thinking - we had to go to another doctor to even find one that thought that sinuses matter) but if he really does have problems, it helps tremendously. Also, I would highly recommend figuring out how to do sinus rinses.
A couple things on those - for many years we mixed tobramycin with saline (or maybe sterile water?) and used that for rinses until I became resistant. Now I don't really do the rinses unless I have a cold or am struggling with allergies but I mix 500 mL of water with 2 tsp of salt and 1 of baking soda. If the salt/water/baking soda ratio is off it can be quite painful to use to perhaps you could try it on yourself first? Using less salt won't hurt, either. Not sure what you were doing before. Good luck!

 

[LittleLab4CF]

Would he be a candidate for a port? The injection site is under the skin so he won't be risking the exposure of a picc line. The snot locker on kids is always gloopy and CFers often are more so. Before everybody jumps into rebuilding his nasal body seek a second opinion. I certainly needed nasal/sinus/turbinate surgeries as an adult but in my town and time anything beyond tonsils and adenoids was uncommon.

LL

 

[TreasureGoddess]

My son also had adenoids out around 3 yrs old. He has sinus surgery about every 3 years to remove polyps. He actually asks for it when things get too cruddy and his breathing is rough. One gooe thing is often his sinuses are infected but his lungs are great. The picc line is just to administer the strong IV antibiotics to kick the body's infection. It's much better to have the surgery, get healing and feeling better. If you're wanting to wait for a month or so, I'd say ok, but I know we waited this last time for 2 months and wished we would've done it earlier. It makes a huge difference. The sinuses are also places for psuedomonas and mrsa to hang out so getting them cleaned out would be better than having them wait and drain the crud into the lungs. Hang in there, it's not nearly as intense as you think it is, I was very worried before my son's first sinus surgery and after about a week, he felt so much better it was well worth it. Talk more to your ENT and CF docs to get questions answered and help you make your decision.

 

[DebbieS]

It will be ok! It's always good to get a second opinion, especially when advised to do extensive treatment. This may be exactly what he needs to nip the sinus issues in the bud for many years to come. I had sinus surgery for polyps and deviated septum around age 30, six years ago, and ent checkup a few months ago revealed no return of polyps, thank G-d.

Please don't be disheartened (and I'd suggest a- always using nebulizer masks instead mouthpieces, and b- spending lots of time by the sea)!