First time with TOBI....

[holmfamily1992]

Hey guys,

It's been so long since I have had to write and I thought things we finally becoming "normal" around here. If you remember, my 15 year old was very sick back in November and since then she just hasn't been getting better. She is becoming ill more often and just isn't herself. The last episode was the Flu and that knocked her on her butt. I called the clinic and they wanted to see her right away. We thought for sure they were going to keep her.

Anyway, the are saying its PA and now she is on Cepro and Tobi. Tobi for the next 30 days. If she doesn't respond they will admit her. She is so sick right now. Coughing all the time but not bringing anything up. Sleeping whenever she can and has no energy. She runs a low grade fever on and off and has mucus like you wouldn't believe. She is also losing weight on a constent basis but not to much but just enough for her docs to not like the trend she is on.

My question, If she responds to the Tobi and Cepro, how long will it take before we start to see an improvement? Is there any special percausions I need to take with the other kids? Also, any special care with the Neb Cups we use for her?

The other kids are doing pretty good. Dylan is doing fantastic and Ryan seems to have this cough that also won't go away but he shows no signs of being sick. Mariah has her episodes with her airway closing but for the most part hasn't missed any school so far.

I look forward to hearing from all of you,
Tina

 

[holmfamily1992]

Hey guys,

It's been so long since I have had to write and I thought things we finally becoming "normal" around here. If you remember, my 15 year old was very sick back in November and since then she just hasn't been getting better. She is becoming ill more often and just isn't herself. The last episode was the Flu and that knocked her on her butt. I called the clinic and they wanted to see her right away. We thought for sure they were going to keep her.

Anyway, the are saying its PA and now she is on Cepro and Tobi. Tobi for the next 30 days. If she doesn't respond they will admit her. She is so sick right now. Coughing all the time but not bringing anything up. Sleeping whenever she can and has no energy. She runs a low grade fever on and off and has mucus like you wouldn't believe. She is also losing weight on a constent basis but not to much but just enough for her docs to not like the trend she is on.

My question, If she responds to the Tobi and Cepro, how long will it take before we start to see an improvement? Is there any special percausions I need to take with the other kids? Also, any special care with the Neb Cups we use for her?

The other kids are doing pretty good. Dylan is doing fantastic and Ryan seems to have this cough that also won't go away but he shows no signs of being sick. Mariah has her episodes with her airway closing but for the most part hasn't missed any school so far.

I look forward to hearing from all of you,
Tina

 

[holmfamily1992]

Hey guys,

It's been so long since I have had to write and I thought things we finally becoming "normal" around here. If you remember, my 15 year old was very sick back in November and since then she just hasn't been getting better. She is becoming ill more often and just isn't herself. The last episode was the Flu and that knocked her on her butt. I called the clinic and they wanted to see her right away. We thought for sure they were going to keep her.

Anyway, the are saying its PA and now she is on Cepro and Tobi. Tobi for the next 30 days. If she doesn't respond they will admit her. She is so sick right now. Coughing all the time but not bringing anything up. Sleeping whenever she can and has no energy. She runs a low grade fever on and off and has mucus like you wouldn't believe. She is also losing weight on a constent basis but not to much but just enough for her docs to not like the trend she is on.

My question, If she responds to the Tobi and Cepro, how long will it take before we start to see an improvement? Is there any special percausions I need to take with the other kids? Also, any special care with the Neb Cups we use for her?

The other kids are doing pretty good. Dylan is doing fantastic and Ryan seems to have this cough that also won't go away but he shows no signs of being sick. Mariah has her episodes with her airway closing but for the most part hasn't missed any school so far.

I look forward to hearing from all of you,
Tina

 

[holmfamily1992]

Hey guys,

It's been so long since I have had to write and I thought things we finally becoming "normal" around here. If you remember, my 15 year old was very sick back in November and since then she just hasn't been getting better. She is becoming ill more often and just isn't herself. The last episode was the Flu and that knocked her on her butt. I called the clinic and they wanted to see her right away. We thought for sure they were going to keep her.

Anyway, the are saying its PA and now she is on Cepro and Tobi. Tobi for the next 30 days. If she doesn't respond they will admit her. She is so sick right now. Coughing all the time but not bringing anything up. Sleeping whenever she can and has no energy. She runs a low grade fever on and off and has mucus like you wouldn't believe. She is also losing weight on a constent basis but not to much but just enough for her docs to not like the trend she is on.

My question, If she responds to the Tobi and Cepro, how long will it take before we start to see an improvement? Is there any special percausions I need to take with the other kids? Also, any special care with the Neb Cups we use for her?

The other kids are doing pretty good. Dylan is doing fantastic and Ryan seems to have this cough that also won't go away but he shows no signs of being sick. Mariah has her episodes with her airway closing but for the most part hasn't missed any school so far.

I look forward to hearing from all of you,
Tina

 

[holmfamily1992]

Hey guys,
<br />
<br />It's been so long since I have had to write and I thought things we finally becoming "normal" around here. If you remember, my 15 year old was very sick back in November and since then she just hasn't been getting better. She is becoming ill more often and just isn't herself. The last episode was the Flu and that knocked her on her butt. I called the clinic and they wanted to see her right away. We thought for sure they were going to keep her.
<br />
<br />Anyway, the are saying its PA and now she is on Cepro and Tobi. Tobi for the next 30 days. If she doesn't respond they will admit her. She is so sick right now. Coughing all the time but not bringing anything up. Sleeping whenever she can and has no energy. She runs a low grade fever on and off and has mucus like you wouldn't believe. She is also losing weight on a constent basis but not to much but just enough for her docs to not like the trend she is on.
<br />
<br />My question, If she responds to the Tobi and Cepro, how long will it take before we start to see an improvement? Is there any special percausions I need to take with the other kids? Also, any special care with the Neb Cups we use for her?
<br />
<br />The other kids are doing pretty good. Dylan is doing fantastic and Ryan seems to have this cough that also won't go away but he shows no signs of being sick. Mariah has her episodes with her airway closing but for the most part hasn't missed any school so far.
<br />
<br />I look forward to hearing from all of you,
<br />Tina

 

[JazzysMom]

Tobi isnt the most pleasant tasting so if gag reflex is an issue...be careful!

It also has a common affect of making one hoarse. Some peoples voice get better after a few days of being on it & some are hoarse through the whole course.

Some have had reactive airways & either had to have the doctor alter the length of the course of treatment or sadly even discontinue it.

I, personally, have only had some hoarseness. Nothing serious & nothing permanent.

If cultures are sensitive to these meds, you should see a difference within the week. Usually a few days depending on how sick she really is.

The Tobi is very sticky & you need to make sure you wash the cups well. Even if you are lax on doing the other ones....this is important because of how sticky it is.

I would try to keep the other kids away during the Tobi. I dont recall off hand if its documented about resistance with being around "2nd hand" Tobi nebs, but you dont want to chance it.

Good Luck & I hope good results come from it!!

Good to see you post BTW~

 

[JazzysMom]

Tobi isnt the most pleasant tasting so if gag reflex is an issue...be careful!

It also has a common affect of making one hoarse. Some peoples voice get better after a few days of being on it & some are hoarse through the whole course.

Some have had reactive airways & either had to have the doctor alter the length of the course of treatment or sadly even discontinue it.

I, personally, have only had some hoarseness. Nothing serious & nothing permanent.

If cultures are sensitive to these meds, you should see a difference within the week. Usually a few days depending on how sick she really is.

The Tobi is very sticky & you need to make sure you wash the cups well. Even if you are lax on doing the other ones....this is important because of how sticky it is.

I would try to keep the other kids away during the Tobi. I dont recall off hand if its documented about resistance with being around "2nd hand" Tobi nebs, but you dont want to chance it.

Good Luck & I hope good results come from it!!

Good to see you post BTW~

 

[JazzysMom]

Tobi isnt the most pleasant tasting so if gag reflex is an issue...be careful!

It also has a common affect of making one hoarse. Some peoples voice get better after a few days of being on it & some are hoarse through the whole course.

Some have had reactive airways & either had to have the doctor alter the length of the course of treatment or sadly even discontinue it.

I, personally, have only had some hoarseness. Nothing serious & nothing permanent.

If cultures are sensitive to these meds, you should see a difference within the week. Usually a few days depending on how sick she really is.

The Tobi is very sticky & you need to make sure you wash the cups well. Even if you are lax on doing the other ones....this is important because of how sticky it is.

I would try to keep the other kids away during the Tobi. I dont recall off hand if its documented about resistance with being around "2nd hand" Tobi nebs, but you dont want to chance it.

Good Luck & I hope good results come from it!!

Good to see you post BTW~

 

[JazzysMom]

Tobi isnt the most pleasant tasting so if gag reflex is an issue...be careful!

It also has a common affect of making one hoarse. Some peoples voice get better after a few days of being on it & some are hoarse through the whole course.

Some have had reactive airways & either had to have the doctor alter the length of the course of treatment or sadly even discontinue it.

I, personally, have only had some hoarseness. Nothing serious & nothing permanent.

If cultures are sensitive to these meds, you should see a difference within the week. Usually a few days depending on how sick she really is.

The Tobi is very sticky & you need to make sure you wash the cups well. Even if you are lax on doing the other ones....this is important because of how sticky it is.

I would try to keep the other kids away during the Tobi. I dont recall off hand if its documented about resistance with being around "2nd hand" Tobi nebs, but you dont want to chance it.

Good Luck & I hope good results come from it!!

Good to see you post BTW~

 

[JazzysMom]

Tobi isnt the most pleasant tasting so if gag reflex is an issue...be careful!
<br />
<br />It also has a common affect of making one hoarse. Some peoples voice get better after a few days of being on it & some are hoarse through the whole course.
<br />
<br />Some have had reactive airways & either had to have the doctor alter the length of the course of treatment or sadly even discontinue it.
<br />
<br />I, personally, have only had some hoarseness. Nothing serious & nothing permanent.
<br />
<br />If cultures are sensitive to these meds, you should see a difference within the week. Usually a few days depending on how sick she really is.
<br />
<br />The Tobi is very sticky & you need to make sure you wash the cups well. Even if you are lax on doing the other ones....this is important because of how sticky it is.
<br />
<br />I would try to keep the other kids away during the Tobi. I dont recall off hand if its documented about resistance with being around "2nd hand" Tobi nebs, but you dont want to chance it.
<br />
<br />Good Luck & I hope good results come from it!!
<br />
<br />Good to see you post BTW~

 

[holmfamily1992]

Her gag reflex is aweful!!! We did the first treatment last night and I didn't think she was going to make it through it. This morning was a little better, lots of coughing and some gaging but she got through it.

One other question I forgot what how contagous is PA? I am boiling all the neb cups. If I don't the saline gets really crusty...

Thanks for the info....This is the kind of stuff the docs don't tell you.

Tina

 

[holmfamily1992]

Her gag reflex is aweful!!! We did the first treatment last night and I didn't think she was going to make it through it. This morning was a little better, lots of coughing and some gaging but she got through it.

One other question I forgot what how contagous is PA? I am boiling all the neb cups. If I don't the saline gets really crusty...

Thanks for the info....This is the kind of stuff the docs don't tell you.

Tina

 

[holmfamily1992]

Her gag reflex is aweful!!! We did the first treatment last night and I didn't think she was going to make it through it. This morning was a little better, lots of coughing and some gaging but she got through it.

One other question I forgot what how contagous is PA? I am boiling all the neb cups. If I don't the saline gets really crusty...

Thanks for the info....This is the kind of stuff the docs don't tell you.

Tina

 

[holmfamily1992]

Her gag reflex is aweful!!! We did the first treatment last night and I didn't think she was going to make it through it. This morning was a little better, lots of coughing and some gaging but she got through it.

One other question I forgot what how contagous is PA? I am boiling all the neb cups. If I don't the saline gets really crusty...

Thanks for the info....This is the kind of stuff the docs don't tell you.

Tina

 

[holmfamily1992]

Her gag reflex is aweful!!! We did the first treatment last night and I didn't think she was going to make it through it. This morning was a little better, lots of coughing and some gaging but she got through it.
<br />
<br />One other question I forgot what how contagous is PA? I am boiling all the neb cups. If I don't the saline gets really crusty...
<br />
<br />Thanks for the info....This is the kind of stuff the docs don't tell you.
<br />
<br />Tina

 

[Ratatosk]

Hopefully someone who has more than one child with CF can answer your questions about precautions for your other kids regarding PA and/or practicing good germ control practices when having more than one child wcf. The usual no drinking from the same glass... Using antibacterial wipes, boiling neb cups...

As for when she'll get better. DS has gotten sick WHILE on Tobi; however, when he was put on Cipro, I think he was much better after a few days...

 

[Ratatosk]

Hopefully someone who has more than one child with CF can answer your questions about precautions for your other kids regarding PA and/or practicing good germ control practices when having more than one child wcf. The usual no drinking from the same glass... Using antibacterial wipes, boiling neb cups...

As for when she'll get better. DS has gotten sick WHILE on Tobi; however, when he was put on Cipro, I think he was much better after a few days...

 

[Ratatosk]

Hopefully someone who has more than one child with CF can answer your questions about precautions for your other kids regarding PA and/or practicing good germ control practices when having more than one child wcf. The usual no drinking from the same glass... Using antibacterial wipes, boiling neb cups...

As for when she'll get better. DS has gotten sick WHILE on Tobi; however, when he was put on Cipro, I think he was much better after a few days...

 

[Ratatosk]

Hopefully someone who has more than one child with CF can answer your questions about precautions for your other kids regarding PA and/or practicing good germ control practices when having more than one child wcf. The usual no drinking from the same glass... Using antibacterial wipes, boiling neb cups...

As for when she'll get better. DS has gotten sick WHILE on Tobi; however, when he was put on Cipro, I think he was much better after a few days...

 

[Ratatosk]

Hopefully someone who has more than one child with CF can answer your questions about precautions for your other kids regarding PA and/or practicing good germ control practices when having more than one child wcf. The usual no drinking from the same glass... Using antibacterial wipes, boiling neb cups...
<br />
<br />As for when she'll get better. DS has gotten sick WHILE on Tobi; however, when he was put on Cipro, I think he was much better after a few days...