Marty has been on Tobi for a while now month on/ month off. Did anyone or your child ever develop a cough while on Tobi? Marty had a tune up last month and is doing his tobi month now. We thought we finally beat the cough with this round of Tobi but now it is coming back. He was also put on oral antibiotics after the tune up because the IVs didn't get rid of the bugs. I would think the Tobi would help. Does this happen to anyone else? he cultures pseudomonas and staph. Hmmmm just wondering what your thoughts are. Do you think it is just a "good" cough? I really do see a difference in him during Tobi months. It has just been such a battle with this and all the other stuff. I wonder sometimes if I am just over reacting....ugh...I am a nervous wreck with all of this. His diagnosis is fairly recent after a roller coaster ride and then it has just been one slam in the face after the other. Thanks everyone! You guys are so great!
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coughing coughing coughing
- Thread starter martysmom
- Start date
Marty has been on Tobi for a while now month on/ month off. Did anyone or your child ever develop a cough while on Tobi? Marty had a tune up last month and is doing his tobi month now. We thought we finally beat the cough with this round of Tobi but now it is coming back. He was also put on oral antibiotics after the tune up because the IVs didn't get rid of the bugs. I would think the Tobi would help. Does this happen to anyone else? he cultures pseudomonas and staph. Hmmmm just wondering what your thoughts are. Do you think it is just a "good" cough? I really do see a difference in him during Tobi months. It has just been such a battle with this and all the other stuff. I wonder sometimes if I am just over reacting....ugh...I am a nervous wreck with all of this. His diagnosis is fairly recent after a roller coaster ride and then it has just been one slam in the face after the other. Thanks everyone! You guys are so great!
Marty has been on Tobi for a while now month on/ month off. Did anyone or your child ever develop a cough while on Tobi? Marty had a tune up last month and is doing his tobi month now. We thought we finally beat the cough with this round of Tobi but now it is coming back. He was also put on oral antibiotics after the tune up because the IVs didn't get rid of the bugs. I would think the Tobi would help. Does this happen to anyone else? he cultures pseudomonas and staph. Hmmmm just wondering what your thoughts are. Do you think it is just a "good" cough? I really do see a difference in him during Tobi months. It has just been such a battle with this and all the other stuff. I wonder sometimes if I am just over reacting....ugh...I am a nervous wreck with all of this. His diagnosis is fairly recent after a roller coaster ride and then it has just been one slam in the face after the other. Thanks everyone! You guys are so great!
M
Mommafirst
Guest
Aw Kelly, I'm so sad to see he's still coughing. Is he still bringing up junk with it? Is it still green? UGH.
I know about the being a nervous wreck -- its like every cough makes your toes curl and sends a shudder through your whole body. It feels impossible to think about anything else.
Alyssa isn't on TOBI, so I don't know if this is what you should be seeing. Does he have asthma or inflamation? As you know, Alyssa is still coughing after everything. Our doc is convinced that we've kncocked all the bugs down (or out) for now and that the remaining cough is probably inflamation/asthma, so we are trying prednisone. Have they done a burst of pred with Marty lately?
(((HUGS)))) I totally get how emotionally overwhelming this is.
I know about the being a nervous wreck -- its like every cough makes your toes curl and sends a shudder through your whole body. It feels impossible to think about anything else.
Alyssa isn't on TOBI, so I don't know if this is what you should be seeing. Does he have asthma or inflamation? As you know, Alyssa is still coughing after everything. Our doc is convinced that we've kncocked all the bugs down (or out) for now and that the remaining cough is probably inflamation/asthma, so we are trying prednisone. Have they done a burst of pred with Marty lately?
(((HUGS)))) I totally get how emotionally overwhelming this is.
M
Mommafirst
Guest
Aw Kelly, I'm so sad to see he's still coughing. Is he still bringing up junk with it? Is it still green? UGH.
I know about the being a nervous wreck -- its like every cough makes your toes curl and sends a shudder through your whole body. It feels impossible to think about anything else.
Alyssa isn't on TOBI, so I don't know if this is what you should be seeing. Does he have asthma or inflamation? As you know, Alyssa is still coughing after everything. Our doc is convinced that we've kncocked all the bugs down (or out) for now and that the remaining cough is probably inflamation/asthma, so we are trying prednisone. Have they done a burst of pred with Marty lately?
(((HUGS)))) I totally get how emotionally overwhelming this is.
I know about the being a nervous wreck -- its like every cough makes your toes curl and sends a shudder through your whole body. It feels impossible to think about anything else.
Alyssa isn't on TOBI, so I don't know if this is what you should be seeing. Does he have asthma or inflamation? As you know, Alyssa is still coughing after everything. Our doc is convinced that we've kncocked all the bugs down (or out) for now and that the remaining cough is probably inflamation/asthma, so we are trying prednisone. Have they done a burst of pred with Marty lately?
(((HUGS)))) I totally get how emotionally overwhelming this is.
M
Mommafirst
Guest
Aw Kelly, I'm so sad to see he's still coughing. Is he still bringing up junk with it? Is it still green? UGH.
<br />
<br />I know about the being a nervous wreck -- its like every cough makes your toes curl and sends a shudder through your whole body. It feels impossible to think about anything else.
<br />
<br />Alyssa isn't on TOBI, so I don't know if this is what you should be seeing. Does he have asthma or inflamation? As you know, Alyssa is still coughing after everything. Our doc is convinced that we've kncocked all the bugs down (or out) for now and that the remaining cough is probably inflamation/asthma, so we are trying prednisone. Have they done a burst of pred with Marty lately?
<br />
<br />(((HUGS)))) I totally get how emotionally overwhelming this is.
<br />
<br />I know about the being a nervous wreck -- its like every cough makes your toes curl and sends a shudder through your whole body. It feels impossible to think about anything else.
<br />
<br />Alyssa isn't on TOBI, so I don't know if this is what you should be seeing. Does he have asthma or inflamation? As you know, Alyssa is still coughing after everything. Our doc is convinced that we've kncocked all the bugs down (or out) for now and that the remaining cough is probably inflamation/asthma, so we are trying prednisone. Have they done a burst of pred with Marty lately?
<br />
<br />(((HUGS)))) I totally get how emotionally overwhelming this is.
DS gets a really stuffy nose the entire time he's on tobi. He uses a mask for the most part during tobi time. And we do notice that he gets a little more of a hoarse, throat clearing cough if he laughs really hard or is upset. His doctor indicated that tobi is harsh and can affect people differently. Some people can't handle tobi, some take half a dose...
With us we increase sinus rinses.
With us we increase sinus rinses.
DS gets a really stuffy nose the entire time he's on tobi. He uses a mask for the most part during tobi time. And we do notice that he gets a little more of a hoarse, throat clearing cough if he laughs really hard or is upset. His doctor indicated that tobi is harsh and can affect people differently. Some people can't handle tobi, some take half a dose...
With us we increase sinus rinses.
With us we increase sinus rinses.
DS gets a really stuffy nose the entire time he's on tobi. He uses a mask for the most part during tobi time. And we do notice that he gets a little more of a hoarse, throat clearing cough if he laughs really hard or is upset. His doctor indicated that tobi is harsh and can affect people differently. Some people can't handle tobi, some take half a dose...
<br />
<br />With us we increase sinus rinses.
<br />
<br />With us we increase sinus rinses.
Thank you so much! He just seems run down, he's pale and he is coughing. The Tobi has worked wonders for him and he has never had any trouble tolerating it in the past. He did have some inflammation issues but I was told it was related to the infection. He is on a Flovent inhaler. Last time we went to clinic she mentioned possibly even taking him off of the flovent because all of his issues have been related to infection. I actually tried calling the clinic today because the cough is getting worse but they are closed. Before he was diagnosed he had been tested for everything under the sun. He has no allergies at all. Is it possible that he just caught a cold while on Tobi? Thanks again. I am going to do a sinus rinse on him today because he seems a little congested. I am so done with 2010!! I hope you guys have a wonderful and healthy New Year!!
Thank you so much! He just seems run down, he's pale and he is coughing. The Tobi has worked wonders for him and he has never had any trouble tolerating it in the past. He did have some inflammation issues but I was told it was related to the infection. He is on a Flovent inhaler. Last time we went to clinic she mentioned possibly even taking him off of the flovent because all of his issues have been related to infection. I actually tried calling the clinic today because the cough is getting worse but they are closed. Before he was diagnosed he had been tested for everything under the sun. He has no allergies at all. Is it possible that he just caught a cold while on Tobi? Thanks again. I am going to do a sinus rinse on him today because he seems a little congested. I am so done with 2010!! I hope you guys have a wonderful and healthy New Year!!
Thank you so much! He just seems run down, he's pale and he is coughing. The Tobi has worked wonders for him and he has never had any trouble tolerating it in the past. He did have some inflammation issues but I was told it was related to the infection. He is on a Flovent inhaler. Last time we went to clinic she mentioned possibly even taking him off of the flovent because all of his issues have been related to infection. I actually tried calling the clinic today because the cough is getting worse but they are closed. Before he was diagnosed he had been tested for everything under the sun. He has no allergies at all. Is it possible that he just caught a cold while on Tobi? Thanks again. I am going to do a sinus rinse on him today because he seems a little congested. I am so done with 2010!! I hope you guys have a wonderful and healthy New Year!!
Oh Heather,
I forgot to ask you..Do you think they will reculture her just to make sure the bugs are down/gone? I really thought we would get rid of the pseudo with this last tune up but we didn't <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He had totally stopped coughing and then a week later the cough came back and he recultured the bugs. So we started up Tobi again shortly after. I really do hope she is doing better and the prednisone helps!! It should help because infection causes inflammation. At tune ups our CF doc puts him on 5 days of orapred in the beginning and I bet it really helps. Before he was diagnosed though, steroids alone never helped.
I forgot to ask you..Do you think they will reculture her just to make sure the bugs are down/gone? I really thought we would get rid of the pseudo with this last tune up but we didn't <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He had totally stopped coughing and then a week later the cough came back and he recultured the bugs. So we started up Tobi again shortly after. I really do hope she is doing better and the prednisone helps!! It should help because infection causes inflammation. At tune ups our CF doc puts him on 5 days of orapred in the beginning and I bet it really helps. Before he was diagnosed though, steroids alone never helped.
Oh Heather,
I forgot to ask you..Do you think they will reculture her just to make sure the bugs are down/gone? I really thought we would get rid of the pseudo with this last tune up but we didn't <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He had totally stopped coughing and then a week later the cough came back and he recultured the bugs. So we started up Tobi again shortly after. I really do hope she is doing better and the prednisone helps!! It should help because infection causes inflammation. At tune ups our CF doc puts him on 5 days of orapred in the beginning and I bet it really helps. Before he was diagnosed though, steroids alone never helped.
I forgot to ask you..Do you think they will reculture her just to make sure the bugs are down/gone? I really thought we would get rid of the pseudo with this last tune up but we didn't <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He had totally stopped coughing and then a week later the cough came back and he recultured the bugs. So we started up Tobi again shortly after. I really do hope she is doing better and the prednisone helps!! It should help because infection causes inflammation. At tune ups our CF doc puts him on 5 days of orapred in the beginning and I bet it really helps. Before he was diagnosed though, steroids alone never helped.
Oh Heather,
<br />I forgot to ask you..Do you think they will reculture her just to make sure the bugs are down/gone? I really thought we would get rid of the pseudo with this last tune up but we didn't <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He had totally stopped coughing and then a week later the cough came back and he recultured the bugs. So we started up Tobi again shortly after. I really do hope she is doing better and the prednisone helps!! It should help because infection causes inflammation. At tune ups our CF doc puts him on 5 days of orapred in the beginning and I bet it really helps. Before he was diagnosed though, steroids alone never helped.
<br />I forgot to ask you..Do you think they will reculture her just to make sure the bugs are down/gone? I really thought we would get rid of the pseudo with this last tune up but we didn't <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He had totally stopped coughing and then a week later the cough came back and he recultured the bugs. So we started up Tobi again shortly after. I really do hope she is doing better and the prednisone helps!! It should help because infection causes inflammation. At tune ups our CF doc puts him on 5 days of orapred in the beginning and I bet it really helps. Before he was diagnosed though, steroids alone never helped.
M
Mommafirst
Guest
Kelly -- no they didn't reculture her on Thursday. She has her annual next Wednesday (as if we haven't seen enough of them) and they'll probably do another culture then.
((((HUGS)))) Let's bring in 2011 and be done with 2010.
((((HUGS)))) Let's bring in 2011 and be done with 2010.
M
Mommafirst
Guest
Kelly -- no they didn't reculture her on Thursday. She has her annual next Wednesday (as if we haven't seen enough of them) and they'll probably do another culture then.
((((HUGS)))) Let's bring in 2011 and be done with 2010.
((((HUGS)))) Let's bring in 2011 and be done with 2010.
M
Mommafirst
Guest
Kelly -- no they didn't reculture her on Thursday. She has her annual next Wednesday (as if we haven't seen enough of them) and they'll probably do another culture then.
<br />
<br />((((HUGS)))) Let's bring in 2011 and be done with 2010.
<br />
<br />((((HUGS)))) Let's bring in 2011 and be done with 2010.