Pseudomomas

[Rebjane]

So, Maggie cultured pseudomonas for the first time just got off the phone with the doc. She also cultured her MRSA. She does have a slight cough; not bad but she had 2 cold back to back with ear infection as well in December.

anyway, he called in 2 weeks oral cipro and 28 days of TOBI to start, then she needs to be recultured in a week after the course is done.

He is not treating the MRSA(though he said the TOBI may work against it) since she is colonized with it.

So, I have never given Maggie TOBI before; Looking for input about what to do, Is it premixed? Anything I should worry about? Feeling really SH%$$ty.

Maggie is going to hate the extra time on these nebs...Looking for insight on how to explain this to her, as she feels well overall; her weight has never been better, just a throat clearing cough...

 

[Rebjane]

So, Maggie cultured pseudomonas for the first time just got off the phone with the doc. She also cultured her MRSA. She does have a slight cough; not bad but she had 2 cold back to back with ear infection as well in December.

anyway, he called in 2 weeks oral cipro and 28 days of TOBI to start, then she needs to be recultured in a week after the course is done.

He is not treating the MRSA(though he said the TOBI may work against it) since she is colonized with it.

So, I have never given Maggie TOBI before; Looking for input about what to do, Is it premixed? Anything I should worry about? Feeling really SH%$$ty.

Maggie is going to hate the extra time on these nebs...Looking for insight on how to explain this to her, as she feels well overall; her weight has never been better, just a throat clearing cough...

 

[Rebjane]

So, Maggie cultured pseudomonas for the first time just got off the phone with the doc. She also cultured her MRSA. She does have a slight cough; not bad but she had 2 cold back to back with ear infection as well in December.
<br />
<br />anyway, he called in 2 weeks oral cipro and 28 days of TOBI to start, then she needs to be recultured in a week after the course is done.
<br />
<br />He is not treating the MRSA(though he said the TOBI may work against it) since she is colonized with it.
<br />
<br />So, I have never given Maggie TOBI before; Looking for input about what to do, Is it premixed? Anything I should worry about? Feeling really SH%$$ty.
<br />
<br />Maggie is going to hate the extra time on these nebs...Looking for insight on how to explain this to her, as she feels well overall; her weight has never been better, just a throat clearing cough...

 

[Rebjane]

Oh I also requested a copy of the culture report; he said pseudomonas was few and sensitive to everything. Pretty sure that is what he said; I was so upset.

 

[Rebjane]

Oh I also requested a copy of the culture report; he said pseudomonas was few and sensitive to everything. Pretty sure that is what he said; I was so upset.

 

[Rebjane]

Oh I also requested a copy of the culture report; he said pseudomonas was few and sensitive to everything. Pretty sure that is what he said; I was so upset.

 

[Rebjane]

One more question; do you use a mask or no mask with TOB? All of Maggie's nebs we use a mask for to get into the sinuses.

 

[Rebjane]

One more question; do you use a mask or no mask with TOB? All of Maggie's nebs we use a mask for to get into the sinuses.

 

[Rebjane]

One more question; do you use a mask or no mask with TOB? All of Maggie's nebs we use a mask for to get into the sinuses.

 

[ktsmom]

Yes, it was a really sad experience for me when DD cultured it for the first time so I know how you feel and I'm really sorry.

TOBI takes us about 18 minutes to neb and it is 2x per day. It comes in vials just like Pulmozyme or HyperSal and it needs to be refrigerated.

As far as explaining it to her, it doesn't <i>always</i> work for us but our standard line is "your body needs extra help". Our doc has had us on the TOBI cycle since the first and only culture but some docs don't do it that way.

Hugs to you - I know this is a crummy day. <img src="i/expressions/heart.gif" border="0">

edited to add - we use a mask for TOBI and everything else

 

[ktsmom]

Yes, it was a really sad experience for me when DD cultured it for the first time so I know how you feel and I'm really sorry.

TOBI takes us about 18 minutes to neb and it is 2x per day. It comes in vials just like Pulmozyme or HyperSal and it needs to be refrigerated.

As far as explaining it to her, it doesn't <i>always</i> work for us but our standard line is "your body needs extra help". Our doc has had us on the TOBI cycle since the first and only culture but some docs don't do it that way.

Hugs to you - I know this is a crummy day. <img src="i/expressions/heart.gif" border="0">

edited to add - we use a mask for TOBI and everything else

 

[ktsmom]

Yes, it was a really sad experience for me when DD cultured it for the first time so I know how you feel and I'm really sorry.
<br />
<br />TOBI takes us about 18 minutes to neb and it is 2x per day. It comes in vials just like Pulmozyme or HyperSal and it needs to be refrigerated.
<br />
<br />As far as explaining it to her, it doesn't <i>always</i> work for us but our standard line is "your body needs extra help". Our doc has had us on the TOBI cycle since the first and only culture but some docs don't do it that way.
<br />
<br />Hugs to you - I know this is a crummy day. <img src="i/expressions/heart.gif" border="0">
<br />
<br />edited to add - we use a mask for TOBI and everything else

 

[Rebjane]

Another question then, Do I keep Maggie home from school when she first starts the Cipro and TOBI? If I had not known about the culture I would send her but just in case there are side effects? What have you done for the first time being on these drugs?

 

[Rebjane]

Another question then, Do I keep Maggie home from school when she first starts the Cipro and TOBI? If I had not known about the culture I would send her but just in case there are side effects? What have you done for the first time being on these drugs?

 

[Rebjane]

Another question then, Do I keep Maggie home from school when she first starts the Cipro and TOBI? If I had not known about the culture I would send her but just in case there are side effects? What have you done for the first time being on these drugs?

 

[Ratatosk]

DS has been on Tobi for a long time. It comes in a box of 56 vials -- 28 day supply --- with I believe 2.5 ml vials. We still use the mask. We have used the mouthpiece sometimes with the nose clip 'cuz he thought it was fun at first, but he hasn't mastered the mouthpiece yet, sometimes the neb hangs out of his mouth and we have to constantly remind him to breathe deeply.

We use a pari and a devilbiss compressor -- takes about 22 minutes. Our first compresor was a nightmare -- new parents, new to cf we didn't know 45-50 minutes was NOT the norm for tobi.

Really no symptoms except DS' nose gets stuffier, more productive. Sometimes he's get a little hoarse the first day. Some people can't tolerate tobi due to bronchiospasm. DH says when he sits with DS during treatments his eyes and nose burn.

Oh, and I felt like I was punched in the gut when DS cultured it. As if we were getting a cf diagnosis all over again. Up until that point, we were still kind of in denial. We did CPT, duoneb, vitamins, enzymes and other meds, but it felt like it was all just a big mistake and that someday someone would tell us so. Pseudomonas made it all too real!

 

[Ratatosk]

DS has been on Tobi for a long time. It comes in a box of 56 vials -- 28 day supply --- with I believe 2.5 ml vials. We still use the mask. We have used the mouthpiece sometimes with the nose clip 'cuz he thought it was fun at first, but he hasn't mastered the mouthpiece yet, sometimes the neb hangs out of his mouth and we have to constantly remind him to breathe deeply.

We use a pari and a devilbiss compressor -- takes about 22 minutes. Our first compresor was a nightmare -- new parents, new to cf we didn't know 45-50 minutes was NOT the norm for tobi.

Really no symptoms except DS' nose gets stuffier, more productive. Sometimes he's get a little hoarse the first day. Some people can't tolerate tobi due to bronchiospasm. DH says when he sits with DS during treatments his eyes and nose burn.

Oh, and I felt like I was punched in the gut when DS cultured it. As if we were getting a cf diagnosis all over again. Up until that point, we were still kind of in denial. We did CPT, duoneb, vitamins, enzymes and other meds, but it felt like it was all just a big mistake and that someday someone would tell us so. Pseudomonas made it all too real!

 

[Ratatosk]

DS has been on Tobi for a long time. It comes in a box of 56 vials -- 28 day supply --- with I believe 2.5 ml vials. We still use the mask. We have used the mouthpiece sometimes with the nose clip 'cuz he thought it was fun at first, but he hasn't mastered the mouthpiece yet, sometimes the neb hangs out of his mouth and we have to constantly remind him to breathe deeply.
<br />
<br />We use a pari and a devilbiss compressor -- takes about 22 minutes. Our first compresor was a nightmare -- new parents, new to cf we didn't know 45-50 minutes was NOT the norm for tobi.
<br />
<br />Really no symptoms except DS' nose gets stuffier, more productive. Sometimes he's get a little hoarse the first day. Some people can't tolerate tobi due to bronchiospasm. DH says when he sits with DS during treatments his eyes and nose burn.
<br />
<br />Oh, and I felt like I was punched in the gut when DS cultured it. As if we were getting a cf diagnosis all over again. Up until that point, we were still kind of in denial. We did CPT, duoneb, vitamins, enzymes and other meds, but it felt like it was all just a big mistake and that someday someone would tell us so. Pseudomonas made it all too real!

 

[Mommafirst]

I'm really sorry to hear this. I have nothing to add except big ((((HUGS))) as you add more crap into the fight for this awful disease.

 

[Mommafirst]

I'm really sorry to hear this. I have nothing to add except big ((((HUGS))) as you add more crap into the fight for this awful disease.