RE: Sinus Surgery Questions- Boston Area Parents Especially

[Guest guest]

Debi-welcome- I, too, am a repeat offender with nasal polps! My son is

having is 2nd in 2 weeks. The ENT advised us for him to inhale gentamicin (I am

sure I mispelled it) that studies have shown it is effective with nasal polpys.

Dylan, my son, sounds EXACTLY like yours, he is 7! We are going to

Manhattan Ear Nose and Throat in the City.

He used the Nasacort AQ which really helped for awhile but now he is TOTALLY

TOTALLY impacted. I worry cause at night his chest retracts and his breathing

sounds so labored!!!

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

[Guest guest]

Hi: You didn't mention what type of sinus surgeries your son had and if

he grows polyps. Augmentin and Levaquin are good antibiotics to deal

with sinus infections. Having been there and done that, I suggest that

you discuss these two antibiotics with your doctor. The frontal sinuses

are the most difficult to clear and alleviate the infections. You should

also discuss what would be better, warm moisture (damp wash cloth, etc.)

on the forehead or cold packs. I wish him the best. Hal

Sinus Surgery Questions- Boston Area Parents

Especially

Hi- I'm new to this list and trying to catch up on some of the

threads so I apologize if sinus surgery has been discussed

extensively! Our son is about to have his second sinus surgery in

less than six months. I wondered if anyone else has had to have

repeated surgeries to get things under control? He is about to turn

9 and is culturing H.Flu, P.A. and Staph. Aureus. When they did the

surgery last time he had some relief for a short time but is back to

coughing around the clock, sinus headaches, dark, dark circles yada,

yada, yada. We use a hypertonic saline solution for nasal irrigation

every day along with nebs, nasal steroids etc. Is there anything

else that they can use in the sinus area that might slow down the

recurrence rate of infected junk? They said he is absolutely jam

packed again- arrrhhh! Just wondering if there are any questions I

should be asking that I am not thinking of. We are seen at MGH and

love his doctors- I'm just trying to stay on top of things and make

sure he gets the best care. Also- any recommendations re:ENT doctors

will be greatly appreciated as his surgeon is leaving at the end of

Feb. and we like to hear from other people that are happy with their

doc. Thanks for listening! Debi

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

_____

[Guest guest]

Welcome aboard--love that e-mail address! We are always sorry to hear

that someone has this disease, but this list is as good as it is because people

such as you dare to join us in our miser, advice, support, agonies

and ecstasies--and in my case, typos! Dive right on in; the water is always

fine--great people, terrific moderators--nevermind we are not too sure just

where we are headed--but we are doing it together!

Love to you and to yours,

n Rojas, wcf, mom of 3 ASSURED adults, the youngest of whom has

cystic fibrosis as well. . .

Sinus Surgery Questions- Boston Area Parents Especially

Hi- I'm new to this list and trying to catch up on some of the

threads so I apologize if sinus surgery has been discussed

extensively! Our son is about to have his second sinus surgery in

less than six months. I wondered if anyone else has had to have

repeated surgeries to get things under control? He is about to turn

9 and is culturing H.Flu, P.A. and Staph. Aureus. When they did the

surgery last time he had some relief for a short time but is back to

coughing around the clock, sinus headaches, dark, dark circles yada,

yada, yada. We use a hypertonic saline solution for nasal irrigation

every day along with nebs, nasal steroids etc. Is there anything

else that they can use in the sinus area that might slow down the

recurrence rate of infected junk? They said he is absolutely jam

packed again- arrrhhh! Just wondering if there are any questions I

should be asking that I am not thinking of. We are seen at MGH and

love his doctors- I'm just trying to stay on top of things and make

sure he gets the best care. Also- any recommendations re:ENT doctors

will be greatly appreciated as his surgeon is leaving at the end of

Feb. and we like to hear from other people that are happy with their

doc. Thanks for listening! Debi

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

------------------------------------------------------------------------------

[Guest guest]

O.K., so even spell check missed misery, as miser is a real word in English!

You will get used to it--typos all over--terrrible! Sorry, n

Sinus Surgery Questions- Boston Area Parents Especially

Hi- I'm new to this list and trying to catch up on some of the

threads so I apologize if sinus surgery has been discussed

extensively! Our son is about to have his second sinus surgery in

less than six months. I wondered if anyone else has had to have

repeated surgeries to get things under control? He is about to turn

9 and is culturing H.Flu, P.A. and Staph. Aureus. When they did the

surgery last time he had some relief for a short time but is back to

coughing around the clock, sinus headaches, dark, dark circles yada,

yada, yada. We use a hypertonic saline solution for nasal irrigation

every day along with nebs, nasal steroids etc. Is there anything

else that they can use in the sinus area that might slow down the

recurrence rate of infected junk? They said he is absolutely jam

packed again- arrrhhh! Just wondering if there are any questions I

should be asking that I am not thinking of. We are seen at MGH and

love his doctors- I'm just trying to stay on top of things and make

sure he gets the best care. Also- any recommendations re:ENT doctors

will be greatly appreciated as his surgeon is leaving at the end of

Feb. and we like to hear from other people that are happy with their

doc. Thanks for listening! Debi

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

------------------------------------------------------------------------------

[Guest guest]

He is about to turn

> 9 and is culturing H.Flu, P.A. and Staph. Aureus.

Hi there! We go to MGH as well for CF follow ups, however, we still

use his original ENT, Dr. Ambrus, out of Quincy for his sinuses.

Ambrus has his own surgical suite at Quincy and uses state of the art

imaging to do the surgeries. He also is very kind and gentle with my

son. I have no magic answer that is for sure. had two surgeries

last year for reoccuring polyps. The polyps is what made us look for

CF in the first place. He was just diagnosised by Dorkin last May.

goes in for vacuuming at the ENT every 2-3 weeks and he still

gets constant sinus infections in the winter. The vacuuming seems to

help but Dorkin feels that is too much. My son cultures Staph aureus

all the time but nothing else as yet. I have a feeling he will want

to put my son on IV antibiotics before the winter is out after trying

him out on steroids. Currently he is on Ceftin - the only antibiotic

that seems to temper the infections. We do nightly tea tree oil

inhalations but that doesn't seem to help much.

jan

[Guest guest]

Hi Jan-

It's nice to meet a fellow Bostonian here! We are seen by Dr.

Dorkin too- we have known him since was born and we really love

him. He really knows his stuff and with his fabulous nurse practioner

, it is like having two doctors who really know the patient. We

used to go to Floating Hospital but followed Dr. Dorkin to MGH.

How old is ? Is he a late diagnosis? I've heard of Dr.

Ambrus actually. We live on the south shore and someone recommended

him to my husband once before for a problem he was having. He ended

up going to someone else but I've heard that Dr. Ambrus is great. We

will definitely keep him in mind when our doctor leaves MGH/MEEI.

doesn't have any polyps- he just keeps getting totally

impacted with infected junk up there and has a big problem with post

nasal drip, which leads to almost coninuous coughing, which then sets

off his asthma. When he gets to that point Dr. Dorkin tries the oral

antibiotics, prednisone route for a while and then ultimately he ends

up on IV meds. How does present in terms of symptoms? I know

that they try to keep them out of the hospital, especially in the

winter when there are so many things going around, but sometimes it

is the only thing that helps. We start the IVs in there and I finish

them up at home- it's not too bad doing two drugs and he can get back

to his normal schedule quicker.

Thanks for the input- maybe we'll run into eachother sometime at

MGH! Are you involved in any of the cff activities like Great

Strides or the Annual Dinner etc.? We have a pretty big team for the

walk- it is a fun day for all.

Take care,

Debi