NASTY Nose Polyps

fourkidsmom

New member
Well our 5 yr old son with cf had an ENT doctor visit today and he had his nose polyup/ sinus surgery on 12/19/05 and a second clean out of the sinuses in Jan 06. He had his post op CT scan March 24th to check things out and he has MORE polyps. Has anyone else had this problem so SOON??? The doctor wants him to up his nasal steriod and now do an oral steriod for 15 days. (He said to check with his CF doctors first, they are now closed so I will wait till Monday because the medicine will expire if I get now and don't use over the weekend.) Here we were wanting good news on his sinus/nose polyps. He can't ever catch a break. I am thinking the ENT doctor is thinking another surgery----what do you guys think??? I mean if he should have to have another surgery should we wait until they get worse or do soon, his lungs have done better since the December surgery. I hate CF!!!

fourkidsmom
 

Tess

New member
Poor little guy, I had polyups removed twice once at 12 and the second time I was like 14....... I didn't care too much for the surgery. heeling was quite uncomfortable... I'd try the nasal sprays that they give if they work for as long as they'd work. Until he finds them really bothersome.

But hay if you talk to his doctors and they feel that it would be better to do what ever they suggest think about it talk about it and talk with him about it.

The CF Dr. I have growing up talked to us and told us what was happening and being planned, not as detailed as he told our parents <I have a brother who is also cystic that's two years older> but it made us feel that we were "involved".
Surprisingly enough we understood alot, growing up faster comes with being sick.

Well those are my thoughts hope I have helped ..... I hate CF Too!!
 

ReneeP

New member
I can totally relate to your situation as I find myself in exactly the same shape at the moment, except maybe a little further along. My daughter (turned 7 last month) had her first sinus surgery back in September. By December she had a second one because the polyps immediately grew back. She had constant sinus infections. After the December surgery, we were extremely hopeful that she would do better... but at her follow up appt in January the dr decided to put her back in for basically a cleanout. They put her to sleep again but didn't really do surgery, just cleaned her out. Then again in March they had to do another one. I just took her back to the ENT yesterday and he is very disappointed in the fact that her nose is already full of polyps again. He said we have no choice but to just leave it alone for a while. She isn't having trouble breathing and hasn't even had a sinus infection in a couple of months so sympomatically she has improved...but the polyps are growing rapidly. He basically said at this point we're just going to monitor her and when it does start causing her discomfort we will decide what to do. She is on nasal spray twice a day and on allergy shots weekly (she has severe allergys which he thinks may be aggrevating her sinuses and making it worse) and he's hoping maybe those will help some.

I hope things improve for your son...I completely understand the frustration. It's so hard to see them suffer and not be able to make it stop. Unfortunately I'm afraid it's not all that uncommon in CF... I sure wish there was something I could say to make you feel better, but if there is something, I haven't found it yet...Best of luck to you.
 

anonymous

New member
My daughter is in the same boat and we are struggling along with the sinuses. My 3 year old is completely full of polyps from her nose through her sinuses. We go in 2 weeks for a CT with pathways in order to get ready for surgery. In the mean time she has done two rounds of IV antibiotics with little success. Our ENT doctor did prescribe ear drops for us to use in the nose...kinda of an unusual use for the med, but it is working to clear her up. We are dropping Ciprodex in her nose 3 drops each nostral twice a day (the prescription is for 3 times a day but that's a little much with all the other meds). After the last surgery she was clear for about two weeks but it didn't last. I don't know if the antibiotic is getting ride of the polyps but is doing something...hopefully keeping the Staph growth down!!! We are continuing to give the Nasonex nose spray and cingular chewable tablets.

Good luck, This is really frustrating. Jana
 

izemmom

New member
Are the polyps only discovered by an ENT during an exam or is there something else to look for? I hate CF, three!
 

anonymous

New member
I had my first surgery with 4 years and again and again afterwards...We stopped counting at the 40. surgery.
When I started to take oral antibiotics all the time at the age of 12 the polyps didn´t grow again.

Uli,43,Germany
 

anonymous

New member
Hello,
My daughter had a terrible case of polyps when she was 7. We didn't realize this for a year or so and after many antibiotics to clear up her "sinus infection" we discovered they were polyps. That's what led to her CF diagnosis. She had the polyps removed, went back after 6 months and sure enough they were growing back. We then were recommended for the Ibuprofen study and she went on a high does of Ibuprofen, I think it was around 600 mg twice a day at the time. When we went back for her next follow-up, the polyps were gone and have not come back. She's 15 now. She's still on Ibuprofen, 1000 mg twice a day. There have been no ill effects.
That's my feedback. Don't try this without your Doctors recommendation. My daughter goes thru a testing process every time they up the dosage to make sure the ibuprofen is clearing her liver. So far so good.
Debbie
Mother of 2 girls w/cf 13 & 15 years old.
 

fourkidsmom

New member
They put our 5 yr old son on Pedia Pred(oral steriod) for 15 days for his nose polyps. Also the nasal steriod upped to 2 squirts each nostril morning and night also. We'll see what happens..........

Tami- Our cf doctor noticed one of the polyps during an exam, it was huge. They then referred him to an ENT and they did an exam and a CT scan which showed more polyps. When they went in for surgery he was full of them, we didn't realize he wasn't breathing thru his nose and couldn't smell. He also started making loud noises when he was sleeping. I should get the photo of what they looked like from the doctor, it was something.

Fourkidsmom
 

Ricky

New member
Dear 4kidsmom,
I myself have had sinus surgery 7 times but I'm 40 years old. I lived in Atlanta, Georgia from 1990 - 2004 and went to the Cystic Fibrosis Center for my Doctor's appointments (but then I contracted Cepacia and coud't go to the CF Center anymore and had to have my 3 month checkups done at the Emory Hospital but that's another story, sorry I digressed for a moment). I knew a little girl who hadn't even become a teenager yet and she had already had sinus surgery 17 times. (now most of the surgeries were to remove polyps which is realitively easy an less painfull than having your sinuses drilled out) This is not a CF urban legend, I new the girl and if you call the CF Center in Atlanta Ga. (404-727-5728) they might confirm for you that although it's rare to have that many surgeries at such a young age your child's case is not unique and other children do sometimes go through the same ordeal. And although surgery is scary especially for children, having polyps removed can be done on an out patient basis and is not as ubtrusive or as painful as having your sinus cavities drilled out. Never wait. If you wait to long as I did in 1996 things can become very complicated. I was told I needed sinus surgery to open up my sinus passages but I didn't want to have surgery so I waited which caused me to contract a bad infection and they had to do the surgery from the outside and chip out some bone at the top of the bridge of my nose so they could clean out my sinuses. They coudn't remove the blockage by going up through my nose so subsequently they had to do it from the outside and they removed a mucus plug the size of one of those big black olives. Since then I've had sinus problems every day and regret waiting to get it done. Plus now I've got a 3/4 inch scar almost right between my eyes and on one side of the bridge of my nose my sunglasses sit in that hole left there from where they had to chip out part of my bone. So my advise would be never wait and if the Doc tell's you that your child needs surgery I would heed his advise. I wouldn't give out this advise if I hadn't gone through that pain.

Good luck,
Ricky
 
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