Re: had enough of this

[Guest guest]

,

I am so sorry that Eilish hasn't improved. It's terrible when they cough and

we worry about them so much. Hang in there sounds like you are doing a great

job. As much as you like the CF clinic staff sometimes they can be so

frustrating especially when you know it all comes down to $$$ and who can

put a price on giving a sick kid what they need. Our thoughts are with you

and your family.

Fiona mo Jack 1yr wcf

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: had enough of this

>Date: Thu, 15 Jan 2004 20:00:19 +1030

>

>I have had enough of Cf. Eilish has a wet cough back. She has been of

>IV's 2 days only and wham its here. I truly think its coming from her

>sinuses. It starts the same way, husky voice then the cough. When I

>heard it last night I felt like screaming. I just don't know what else

>to do. 4 weeks of IV's in 9 weeks is heaps and the minute it

>********stops its back. I am so angry. I don't know who to be angry

>with so I am angry with the disease.

>

>Any suggestions for sinuses? rang the cf centre and they said to

>put her on Augmentin. I am not wanting to do this. Although I

>absolutely trust her Dr. I feel she doesn't need more antibiotics she

>needs something to thin down the mucus to move it. So I have given her

>inhaled Ventolin to break it up.

>

>I've also spray saline up her nose. At this stage I am open for

>suggestions. said on Monday he will ring them back (I have had

>enough) and tell them to do something. Pulmozyme is not on the

>government listing her so the hsp. has to pay $1000.00 per month for it.

>They give it out sparingly. But is on the war path for at least a

>trial of it.

>

>Sorry about the moaning but I have had it . Well better go 'bash' her

>now. She's lucky I love her so much LOL!

>

> (Australia)

>

>

>

>

[Guest guest]

DEAR .

SHE NEEDS THE PULMOZYME......IT IS A MAINTANCE MED... & SHE SHOULD BE ON IT.

Bless your heart & of course her's as well It isn't fun for that wee one

going thru this..she will make it. Get to stay on it until you have it

for her. After one month & they see the difference ----they will see that it

will actually SAVE them money. less hospital & all the other meds.

My has only that to take.............. & all her exercise.......Enzymes

with just certain foods......

I hope you will be told you may have it soon

LOVE & HUGS, GrandmomBEV

had enough of this

I have had enough of Cf. Eilish has a wet cough back. She has been of

IV's 2 days only and wham its here. I truly think its coming from her

sinuses. It starts the same way, husky voice then the cough. When I

heard it last night I felt like screaming. I just don't know what else

to do. 4 weeks of IV's in 9 weeks is heaps and the minute it

********stops its back. I am so angry. I don't know who to be angry

with so I am angry with the disease.

Any suggestions for sinuses? rang the cf centre and they said to

put her on Augmentin. I am not wanting to do this. Although I

absolutely trust her Dr. I feel she doesn't need more antibiotics she

needs something to thin down the mucus to move it. So I have given her

inhaled Ventolin to break it up.

I've also spray saline up her nose. At this stage I am open for

suggestions. said on Monday he will ring them back (I have had

enough) and tell them to do something. Pulmozyme is not on the

government listing her so the hsp. has to pay $1000.00 per month for it.

They give it out sparingly. But is on the war path for at least a

trial of it.

Sorry about the moaning but I have had it . Well better go 'bash' her

now. She's lucky I love her so much LOL!

(Australia)

[Guest guest]

,

I agree. You and Eilish have had to deal with too much lately. I

hope that you get resolution really quick. Is it possible that it is

just a persistant viral thing? Abby has had a cough for a month and

antibiotics didn't help. The doctor told us that it may just be

viral. He said that it could also be caused by increased refluxing

or alergeries. Anyway, good luck in getting an answer.

Thinking of you,

Gale

> I have had enough of Cf. Eilish has a wet cough back. She has

been of

> IV's 2 days only and wham its here. I truly think its coming from

her

> sinuses. It starts the same way, husky voice then the cough. When

I

> heard it last night I felt like screaming. I just don't know what

else

> to do. 4 weeks of IV's in 9 weeks is heaps and the minute it

> ********stops its back. I am so angry. I don't know who to be

angry

> with so I am angry with the disease.

>

> Any suggestions for sinuses? rang the cf centre and they

said to

> put her on Augmentin. I am not wanting to do this. Although I

> absolutely trust her Dr. I feel she doesn't need more antibiotics

she

> needs something to thin down the mucus to move it. So I have given

her

> inhaled Ventolin to break it up.

>

> I've also spray saline up her nose. At this stage I am open for

> suggestions. said on Monday he will ring them back (I have

had

> enough) and tell them to do something. Pulmozyme is not on the

> government listing her so the hsp. has to pay $1000.00 per month

for it.

> They give it out sparingly. But is on the war path for at

least a

> trial of it.

>

> Sorry about the moaning but I have had it . Well better go 'bash'

her

> now. She's lucky I love her so much LOL!

>

> (Australia)

>

>

>

>

[Guest guest]

For some of us, our sinuses are the culprit that keeps an infection

possible at any time. Augmentin happens to be an effective antibiotic

against most sinus bugs so please don't eliminate it from your

consideration. Sometimes it takes a " cocktail " of medications to

overcome the infections. The saline works well for most of us to keep

the sinuses draining, but it can't eliminate the bacteria. When the

infections in my sinuses are minimized (they never go completely away

for me, unfortunately) the pseudomonas, staph, aspergillus and other

infections that plague my lungs stay in their colonies and behave

themselves to a degree that's tolerable (my prophylactic antibiotic

Zithromax keeps them in check). What works for me might be too much for

Eilish due to the major difference in our ages. However, if your doctor

thinks it's appropriate, use the Augmentin and we'll hope she recovers

soon now that summer is there! We could use a bit of OZ summer right now

as it is zero degrees here in Connecticut. Hal

had enough of this

I have had enough of Cf. Eilish has a wet cough back. She has been of

IV's 2 days only and wham its here. I truly think its coming from her

sinuses. It starts the same way, husky voice then the cough. When I

heard it last night I felt like screaming. I just don't know what else

to do. 4 weeks of IV's in 9 weeks is heaps and the minute it

********stops its back. I am so angry. I don't know who to be angry

with so I am angry with the disease.

Any suggestions for sinuses? rang the cf centre and they said to

put her on Augmentin. I am not wanting to do this. Although I

absolutely trust her Dr. I feel she doesn't need more antibiotics she

needs something to thin down the mucus to move it. So I have given her

inhaled Ventolin to break it up.

I've also spray saline up her nose. At this stage I am open for

suggestions. said on Monday he will ring them back (I have had

enough) and tell them to do something. Pulmozyme is not on the

government listing her so the hsp. has to pay $1000.00 per month for it.

They give it out sparingly. But is on the war path for at least a

trial of it.

Sorry about the moaning but I have had it . Well better go 'bash' her

now. She's lucky I love her so much LOL!

(Australia)

[Guest guest]

,

That truly stinks! I am so sorry that Eilish is not feeling well again. have

you tried guianefissin (sp?) or guiafinex? it does help to loosen up the mucus

but you have to make sure that she drinks extra water with it. We can get it

over the counter here in robitussin DM and a few other cold meds.

Fight for that pulmozyme!!!!!!! It really does work!

Mom of 5 with CF

had enough of this

I have had enough of Cf. Eilish has a wet cough back. She has been of

IV's 2 days only and wham its here. I truly think its coming from her

sinuses. It starts the same way, husky voice then the cough. When I

heard it last night I felt like screaming. I just don't know what else

to do. 4 weeks of IV's in 9 weeks is heaps and the minute it

********stops its back. I am so angry. I don't know who to be angry

with so I am angry with the disease.

Any suggestions for sinuses? rang the cf centre and they said to

put her on Augmentin. I am not wanting to do this. Although I

absolutely trust her Dr. I feel she doesn't need more antibiotics she

needs something to thin down the mucus to move it. So I have given her

inhaled Ventolin to break it up.

I've also spray saline up her nose. At this stage I am open for

suggestions. said on Monday he will ring them back (I have had

enough) and tell them to do something. Pulmozyme is not on the

government listing her so the hsp. has to pay $1000.00 per month for it.

They give it out sparingly. But is on the war path for at least a

trial of it.

Sorry about the moaning but I have had it . Well better go 'bash' her

now. She's lucky I love her so much LOL!

(Australia)

[Guest guest]

,

Gosh I wish there was some way that I could help. I have a half a

box of pulmozyme in my fridge. If you can think of a way for me to

get it to you I would send it in a heart beat. It has to be

refrigerated and I do not know how long it would take to get to

Australia. I know how you feel when you hear her coughing. is

getting ready for school and every few minutes starts to cough and

it makes my heart jump ( there it goes again). Its a Mommy thing I

think. Just like how you can hear them cry from a mile

away.... " honey the baby's crying " and he looks at you like you are

telepathic...heehee.

If anyone has any sugggestions on how I could mail this to ,

please let me know!

e

[Guest guest]

Hi {{{{}}}},

I am so sorry to hear this about Eilish. When ;s sinuses get like

this they put him on a special mixture of Bactroban ointment and nasal

saline for 30 days. I hope she gets to feeling better soon!!

Deana

Mom to 13 no cf and 7 wcf

----- Original Message -----

> I have had enough of Cf. Eilish has a wet cough back. She has been of

> IV's 2 days only and wham its here. I truly think its coming from her

> sinuses. It starts the same way, husky voice then the cough. When I

> heard it last night I felt like screaming. I just don't know what else

> to do. 4 weeks of IV's in 9 weeks is heaps and the minute it

> ********stops its back. I am so angry. I don't know who to be angry

> with so I am angry with the disease.

>

> Any suggestions for sinuses? rang the cf centre and they said to

> put her on Augmentin. I am not wanting to do this. Although I

> absolutely trust her Dr. I feel she doesn't need more antibiotics she

> needs something to thin down the mucus to move it. So I have given her

> inhaled Ventolin to break it up.

>

> I've also spray saline up her nose. At this stage I am open for

> suggestions. said on Monday he will ring them back (I have had

> enough) and tell them to do something. Pulmozyme is not on the

> government listing her so the hsp. has to pay $1000.00 per month for it.

> They give it out sparingly. But is on the war path for at least a

> trial of it.

>

> Sorry about the moaning but I have had it . Well better go 'bash' her

> now. She's lucky I love her so much LOL!

>

> (Australia)