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Nasal Polyps

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Holy Cow... I didn't think that they could/would grow back so quick. I

thought every 2 yrs.

Dylan is a horror at nose sprays, etc.

Oh Boy.

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

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Rosemary

Ainslie had her first surgery for nasal polyps when she was 4 1/2,

within 10 weeks they were back, not as bad but starting to cause

problems. She had her second surgery 6 months after the first.

She started with a number of nasal sprays, beconase and a saline

solution, this helped to extend the next surgery for 18 months. After

that we introduced Livostin an antihistime nasal spray and this helped

to extend the surgery by 2 1/2 years.

I do know of a boy/ young adult now who had been having surgery 3-4

times a year for the last few years. At the moment he is going through

the longest stretch without needing surgery - he has grown and so have

his sinuses.

There is hope.

Terri

mum to Ainslie 10 3/4 wcf and Connor 6 3/4 nocf

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Rosemary,

Just curious... has your son recently gone through a growth spurt?

's nasal polyps grew right along during major growth times. I

asked his ENT whether there was any connection, but all he said was,

" No one knows what causes nasal polyps. "

Of course, this was back in the 80's and early 90's, surely research

has evolved a little bit. At least, I hope it has!

I remember reading a study involving pwcf who had nasal polyps. Those

that used Pulmozyme so that they were inhaling it in their sinuses had

a better outcome than those that didn't.

A long time ago I asked 's pulmo doctor whether or not he could

use the mask to inhale Pulmozyme, thinking it would be good for

sinuses, but it wasn't " approved " for sinuses (but he told us we could

do it anyway!).

Also, there are studies that showed pwcf who have sinus fungal

infections (often undiagnosed sinus fungal infections!) have more

sinus polyps than those that don't.

Which to me, dovetails nicely with that other recently published study

showing that people with chronic sinusitis were found to have hidden

fungal sinus infections, and when they started taking a daily

probiotic the number of sinus infections decreased.

I started taking a daily probiotic about last February -- just one a

day. And I don't know if it's just coincindence or not, but I sure

have noticed a huge difference in my sinuses!

Oddly, when started taking magnesium he also started taking a

probiotic (and that's when he started inhaling tea tree essential

oil). His sinuses were really kicking up at that time -- and you could

tell the once-dormant sinus polyps must have kicked up. But shortly

after starting those treatments, the sinus problems went away.

Now, the only time he sounds stuffy is *sometimes* when he first wakes

up in the morning! (knock wood!)

Just a thought if you're looking to stay out of the ENT's office!

Kim

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Cody had his first surgery for nasal polyps when he was 13 months old. They

were the worst ever--had quickly gone from polyps to a full-blown

mucocele--if you don't know what a mucocele is, here is a very good

explanation--his was the kind that pushed his eyeball out (I called it his

" Barbra Bush " eye--mean, I know!), and caused compression of his optic

nerve, which caused him to temporarily lose his vision in his left eye.

(ignore the part about the eye cancer--it's not caused just by that)

http://www.eyecancer.com/conditions/Orbital%20Tumors/mucocele.html

It was surgically removed by Dr. Rimmel at the Fairview-University in

Minneapolis, but as Cody was so tiny it was a very delicate and precarious

surgery. Mucoceles rarely (very rarely) happen in children, let alone

infants, so he became quite a case study! Cody's pictures (eeeeewwww!!!)

are used in his lectures now.

He ended up getting them back about 6 months later and had them removed

again, and was very prone to mucoceles, and after his 4th surgery in 2

years, they finally got more aggressive and ended up shaving bone from

around his eye near his sinuses to give the polyps more room so they were

less likely to cause damage to his eye. I can now tell when he begins to

develop them--he starts softly snoring, mouth breathes more, and begins to

turn sort of bruised-looking in the area over his nose right between his

eyes. He so far has had 8 sinus surgeries, but so far we have gone 2-1/2

years since the last one. Although, his last CT scan shows increased

" opacity " in the sinuses, indicating that the next one may not be far off!

But, they also believe that his reflux may have been a contributing factor,

also, and now with that under control, things will hopefully get better.

And yes, we do use a mask for treatments, although we do NOT use Pulmozyme.

He had problems with it--he didn't have enough buildup in his lungs for the

Pulmozyme to work on, so they believe it began irritating his healthy

tissue, and he began to cough all the time. Kind of a dry,

irritated-sounding cough, which was never productive. After they stopped

the Pulmozyme, the coughing stopped. Hmmmmm.... We use Mucomyst 20% and

albuterol in his nebs.

Quick sidenote--I just heard a lound BANG upstairs, and ran up there--poor

Codybug had fallen out of bed! He had already tucked himself back in, but a

kiss from Mommy always makes it better still! LOL

S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf)

Nasal Polyps

> Rosemary

>

> Ainslie had her first surgery for nasal polyps when she was 4 1/2,

> within 10 weeks they were back, not as bad but starting to cause

> problems. She had her second surgery 6 months after the first.

>

> She started with a number of nasal sprays, beconase and a saline

> solution, this helped to extend the next surgery for 18 months. After

> that we introduced Livostin an antihistime nasal spray and this helped

> to extend the surgery by 2 1/2 years.

>

> I do know of a boy/ young adult now who had been having surgery 3-4

> times a year for the last few years. At the moment he is going through

> the longest stretch without needing surgery - he has grown and so have

> his sinuses.

>

> There is hope.

>

> Terri

> mum to Ainslie 10 3/4 wcf and Connor 6 3/4 nocf

>

>

>

> -------------------------------------------

> 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.

>

> ------------------------------------

>

>

>

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