Tobi - bronchial spasms

[sdelorenzo]

My son, Jack, cultured pseudomonas once at his first birthday. He was on Tobi for three months and when he tried Tobi again after a month off, he had bronchial spasms. Thankfully, Jack has not cultured the pseudomonas again, until today. Uhhhh.

So I started the Tobi tonight praying that he wouldn't have bronchial spasms. Well he is upstairs coughing SOOOO much. His doctor said there was nothing left by nebulizer to try if Tobi doesn't work. That is not good news.

Has anyone had constant coughing (bronchial spasms) after Tobi? Anyone have any suggestions????
Thank you, Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

My son, Jack, cultured pseudomonas once at his first birthday. He was on Tobi for three months and when he tried Tobi again after a month off, he had bronchial spasms. Thankfully, Jack has not cultured the pseudomonas again, until today. Uhhhh.

So I started the Tobi tonight praying that he wouldn't have bronchial spasms. Well he is upstairs coughing SOOOO much. His doctor said there was nothing left by nebulizer to try if Tobi doesn't work. That is not good news.

Has anyone had constant coughing (bronchial spasms) after Tobi? Anyone have any suggestions????
Thank you, Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

My son, Jack, cultured pseudomonas once at his first birthday. He was on Tobi for three months and when he tried Tobi again after a month off, he had bronchial spasms. Thankfully, Jack has not cultured the pseudomonas again, until today. Uhhhh.

So I started the Tobi tonight praying that he wouldn't have bronchial spasms. Well he is upstairs coughing SOOOO much. His doctor said there was nothing left by nebulizer to try if Tobi doesn't work. That is not good news.

Has anyone had constant coughing (bronchial spasms) after Tobi? Anyone have any suggestions????
Thank you, Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[catboogie]

is he doing really good airway clearance before the tobi? i found that i would cough more if i didn't do good clearance beforehand--it would also coat my lungs and give me a very unpleasant sensation. thankfully that was before the vest. no problems since.

good luck!

 

[catboogie]

is he doing really good airway clearance before the tobi? i found that i would cough more if i didn't do good clearance beforehand--it would also coat my lungs and give me a very unpleasant sensation. thankfully that was before the vest. no problems since.

good luck!

 

[catboogie]

is he doing really good airway clearance before the tobi? i found that i would cough more if i didn't do good clearance beforehand--it would also coat my lungs and give me a very unpleasant sensation. thankfully that was before the vest. no problems since.

good luck!

 

[coltsfan715]

I normally always cough during my TOBI treatment and shortly afterwards. I will say most of my coughing is due to throat irriation not so much bronchial spasms. Maybe try having him gargle water when he is done with the treatment or drink water throughout the treatment, maybe the TOBI is just irritating his throat to the point that he coughs - the vapor causes that for me.

If it doesn't help maybe ask the doc if you could do an albuterol treatment AFTER he does his TOBI dose.That may help to open him up afterwards. I know they want you to do albuterol before TOBI to open the airways so the med gets in farther - maybe you could split his albuterol dose - let him do half before TOBI and half after. I don't even know if that is okay to do - just a thought of something you could maybe ask his docs about.

I will say though most of my coughing during or after TOBI is subsided by drinking water or something else.

Hope you find a solution soon,
Lindsey

 

[coltsfan715]

I normally always cough during my TOBI treatment and shortly afterwards. I will say most of my coughing is due to throat irriation not so much bronchial spasms. Maybe try having him gargle water when he is done with the treatment or drink water throughout the treatment, maybe the TOBI is just irritating his throat to the point that he coughs - the vapor causes that for me.

If it doesn't help maybe ask the doc if you could do an albuterol treatment AFTER he does his TOBI dose.That may help to open him up afterwards. I know they want you to do albuterol before TOBI to open the airways so the med gets in farther - maybe you could split his albuterol dose - let him do half before TOBI and half after. I don't even know if that is okay to do - just a thought of something you could maybe ask his docs about.

I will say though most of my coughing during or after TOBI is subsided by drinking water or something else.

Hope you find a solution soon,
Lindsey

 

[coltsfan715]

I normally always cough during my TOBI treatment and shortly afterwards. I will say most of my coughing is due to throat irriation not so much bronchial spasms. Maybe try having him gargle water when he is done with the treatment or drink water throughout the treatment, maybe the TOBI is just irritating his throat to the point that he coughs - the vapor causes that for me.

If it doesn't help maybe ask the doc if you could do an albuterol treatment AFTER he does his TOBI dose.That may help to open him up afterwards. I know they want you to do albuterol before TOBI to open the airways so the med gets in farther - maybe you could split his albuterol dose - let him do half before TOBI and half after. I don't even know if that is okay to do - just a thought of something you could maybe ask his docs about.

I will say though most of my coughing during or after TOBI is subsided by drinking water or something else.

Hope you find a solution soon,
Lindsey

 

[Prussian]

It's perfectly normal to feel tight after doing Tobi (it happens to me all the time). Doing proper airway clearance beforehand improves the situation a lot.

 

[Prussian]

It's perfectly normal to feel tight after doing Tobi (it happens to me all the time). Doing proper airway clearance beforehand improves the situation a lot.

 

[Prussian]

It's perfectly normal to feel tight after doing Tobi (it happens to me all the time). Doing proper airway clearance beforehand improves the situation a lot.

 

[lightNlife]

The reaction you described is not uncommon with TOBI. I notice that I cough much more when I first return to the treatment (after having a month off) but it subsides after a few days. I can't imagine the frustration and helplessness you must feel as you watch your little one struggle with the treatment.

My only advice is to stick with it and not back off with the neb treatment unless it's to the point where he's coughing up blood or unless something else truly scary is going on. In my experience with CF, coughing can be a good thing--it shakes things up enough (even if not a lot of mucus is being brought up) to help jostle that gunk up and out of harm's way.

When I was little and doing treatments, my parents had a number of ways they got me to focus on something other than the coughing. It may sound silly, but once I'd start coughing, I found I continued coughing even to the point of coughing to make myself sick, which was NOT a good thing. My parents helped me focus on breathing and taught me to visualize what the medicine was helping my lungs do. My distracting my brain, my body was able to relax a bit and my coughing changed from violent spasming to the "good" kind of productive cough. It took a lot of practice and a lot of patience, but I think overall, it was beneficial.

Good luck, and I hope things are under better control soon.

-Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[lightNlife]

The reaction you described is not uncommon with TOBI. I notice that I cough much more when I first return to the treatment (after having a month off) but it subsides after a few days. I can't imagine the frustration and helplessness you must feel as you watch your little one struggle with the treatment.

My only advice is to stick with it and not back off with the neb treatment unless it's to the point where he's coughing up blood or unless something else truly scary is going on. In my experience with CF, coughing can be a good thing--it shakes things up enough (even if not a lot of mucus is being brought up) to help jostle that gunk up and out of harm's way.

When I was little and doing treatments, my parents had a number of ways they got me to focus on something other than the coughing. It may sound silly, but once I'd start coughing, I found I continued coughing even to the point of coughing to make myself sick, which was NOT a good thing. My parents helped me focus on breathing and taught me to visualize what the medicine was helping my lungs do. My distracting my brain, my body was able to relax a bit and my coughing changed from violent spasming to the "good" kind of productive cough. It took a lot of practice and a lot of patience, but I think overall, it was beneficial.

Good luck, and I hope things are under better control soon.

-Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[lightNlife]

The reaction you described is not uncommon with TOBI. I notice that I cough much more when I first return to the treatment (after having a month off) but it subsides after a few days. I can't imagine the frustration and helplessness you must feel as you watch your little one struggle with the treatment.

My only advice is to stick with it and not back off with the neb treatment unless it's to the point where he's coughing up blood or unless something else truly scary is going on. In my experience with CF, coughing can be a good thing--it shakes things up enough (even if not a lot of mucus is being brought up) to help jostle that gunk up and out of harm's way.

When I was little and doing treatments, my parents had a number of ways they got me to focus on something other than the coughing. It may sound silly, but once I'd start coughing, I found I continued coughing even to the point of coughing to make myself sick, which was NOT a good thing. My parents helped me focus on breathing and taught me to visualize what the medicine was helping my lungs do. My distracting my brain, my body was able to relax a bit and my coughing changed from violent spasming to the "good" kind of productive cough. It took a lot of practice and a lot of patience, but I think overall, it was beneficial.

Good luck, and I hope things are under better control soon.

-Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[Debi]

I had the same problem with TOBI once, and the head of the cf center suggested doing half my albuterol before and the other half after, or even doing two treatments. Worked wonders. Sometimes I have problems with the bronchospasms and sometimes I don't. I think it depends on exactly which bugs are running loose in my lungs at the time! At any rate, she advised me to feel free to experiment a bit to find what worked. And, I am always happy to be able to use the TOBI rather than IVs.

Debi
54 w/cf

 

[Debi]

I had the same problem with TOBI once, and the head of the cf center suggested doing half my albuterol before and the other half after, or even doing two treatments. Worked wonders. Sometimes I have problems with the bronchospasms and sometimes I don't. I think it depends on exactly which bugs are running loose in my lungs at the time! At any rate, she advised me to feel free to experiment a bit to find what worked. And, I am always happy to be able to use the TOBI rather than IVs.

Debi
54 w/cf

 

[Debi]

I had the same problem with TOBI once, and the head of the cf center suggested doing half my albuterol before and the other half after, or even doing two treatments. Worked wonders. Sometimes I have problems with the bronchospasms and sometimes I don't. I think it depends on exactly which bugs are running loose in my lungs at the time! At any rate, she advised me to feel free to experiment a bit to find what worked. And, I am always happy to be able to use the TOBI rather than IVs.

Debi
54 w/cf

 

[alegris]

Hi,<br>
<br>
I have asthma as well as CF, and I get severe bronchospasms when I
do the TOBI as well.  My doc put me on liquid ventolin (added
right in with the TOBI) to keep these symptoms under control.
 It comes concentrated in a bottle and I add 0.5 ml (2.5 mg)
with every treatment.  It helps alot!  Suggest it to your
doctor.<br>
<br>
Adrienne.

 

[alegris]

Hi,<br>
<br>
I have asthma as well as CF, and I get severe bronchospasms when I
do the TOBI as well.  My doc put me on liquid ventolin (added
right in with the TOBI) to keep these symptoms under control.
 It comes concentrated in a bottle and I add 0.5 ml (2.5 mg)
with every treatment.  It helps alot!  Suggest it to your
doctor.<br>
<br>
Adrienne.