TOBI

[damiensmom]

Damien did a culture in November. This December 18th we had clinic. I was talking with Dr. Radford and she was looking at her reports and said lets get a culture. And in conversation I mentioned last culture and she looked and said he did have one in November. She said excuse me and went and got the results I guess she had a single paper in her hand. Damien has cultured P.A. I remember Damiens nurse calling after a culture to say he needed Bactim. It was fairly quickly after clinic visit three days or so. That was 8 months ago at least so I cant say exactly how long it was not more than a week. I am assuming paper work got mishandeld as to why we didnt get a call for Novembers culture and put on Tobi then. Damiens been under the weather I packed for a hospital stay this last visit cause I felt there was something going on. Well we didnt have to get admitted home for xmas! But on the other hand I think maybe he needs to be. I was thinking you could I.V for fist P.A to try to eradicate before colonization? I mentioned it to Doc. She said No inhalihation is sufficant. I was given alot of instruction in a short period due to late in the day appointment and they were running behind I could tell. And I was out of sorts due to the culture of P.A so I need some info and I have some questions.

Do you give cpt in between the 15 minute wait for Tobi after Xopenex?

I give it 12 hours apart . is it better to be a little late than early ?

I was told to give it as far apart from Pulmazyme because of brohncospasm. How soon is to soon?

And what have you experainced as far as side affects or behavor in children?

Does Dehydration happen easily.

Damien seems miserable I feel we should of been on meds 6 weeks ago. Is it harder on him because it has been there for a minute. Should he feel better soon?

 

[damiensmom]

Damien did a culture in November. This December 18th we had clinic. I was talking with Dr. Radford and she was looking at her reports and said lets get a culture. And in conversation I mentioned last culture and she looked and said he did have one in November. She said excuse me and went and got the results I guess she had a single paper in her hand. Damien has cultured P.A. I remember Damiens nurse calling after a culture to say he needed Bactim. It was fairly quickly after clinic visit three days or so. That was 8 months ago at least so I cant say exactly how long it was not more than a week. I am assuming paper work got mishandeld as to why we didnt get a call for Novembers culture and put on Tobi then. Damiens been under the weather I packed for a hospital stay this last visit cause I felt there was something going on. Well we didnt have to get admitted home for xmas! But on the other hand I think maybe he needs to be. I was thinking you could I.V for fist P.A to try to eradicate before colonization? I mentioned it to Doc. She said No inhalihation is sufficant. I was given alot of instruction in a short period due to late in the day appointment and they were running behind I could tell. And I was out of sorts due to the culture of P.A so I need some info and I have some questions.

Do you give cpt in between the 15 minute wait for Tobi after Xopenex?

I give it 12 hours apart . is it better to be a little late than early ?

I was told to give it as far apart from Pulmazyme because of brohncospasm. How soon is to soon?

And what have you experainced as far as side affects or behavor in children?

Does Dehydration happen easily.

Damien seems miserable I feel we should of been on meds 6 weeks ago. Is it harder on him because it has been there for a minute. Should he feel better soon?

 

[damiensmom]

Damien did a culture in November. This December 18th we had clinic. I was talking with Dr. Radford and she was looking at her reports and said lets get a culture. And in conversation I mentioned last culture and she looked and said he did have one in November. She said excuse me and went and got the results I guess she had a single paper in her hand. Damien has cultured P.A. I remember Damiens nurse calling after a culture to say he needed Bactim. It was fairly quickly after clinic visit three days or so. That was 8 months ago at least so I cant say exactly how long it was not more than a week. I am assuming paper work got mishandeld as to why we didnt get a call for Novembers culture and put on Tobi then. Damiens been under the weather I packed for a hospital stay this last visit cause I felt there was something going on. Well we didnt have to get admitted home for xmas! But on the other hand I think maybe he needs to be. I was thinking you could I.V for fist P.A to try to eradicate before colonization? I mentioned it to Doc. She said No inhalihation is sufficant. I was given alot of instruction in a short period due to late in the day appointment and they were running behind I could tell. And I was out of sorts due to the culture of P.A so I need some info and I have some questions.

Do you give cpt in between the 15 minute wait for Tobi after Xopenex?

I give it 12 hours apart . is it better to be a little late than early ?

I was told to give it as far apart from Pulmazyme because of brohncospasm. How soon is to soon?

And what have you experainced as far as side affects or behavor in children?

Does Dehydration happen easily.

Damien seems miserable I feel we should of been on meds 6 weeks ago. Is it harder on him because it has been there for a minute. Should he feel better soon?

 

[Ratatosk]

We give DS his Tobi at 6:15 a.m. and then about 6 p.m. We do the Pulmozyme at his last CPT treatment for the night around 10 pm. We do CPT/Vest while doing his bronchiodialtors (Albuterol/Atrovent). When that's done, we start up the tobi. We don't worry that much about the 12 hours. We've given it early (4 p.m.) and later at night (9:30 p.m.) when we've had other obligations -- going to a wedding, holidays... Only side effects we've noticed is that sometimes DS gets a stuffy, boogery nose, usually at the start he might sound a little froggy. My husband usually administers the tobi and he's said his throat feels kinda scratching and his eyes burn a little, so figure that's probably what DS is feeling too.

 

[Ratatosk]

We give DS his Tobi at 6:15 a.m. and then about 6 p.m. We do the Pulmozyme at his last CPT treatment for the night around 10 pm. We do CPT/Vest while doing his bronchiodialtors (Albuterol/Atrovent). When that's done, we start up the tobi. We don't worry that much about the 12 hours. We've given it early (4 p.m.) and later at night (9:30 p.m.) when we've had other obligations -- going to a wedding, holidays... Only side effects we've noticed is that sometimes DS gets a stuffy, boogery nose, usually at the start he might sound a little froggy. My husband usually administers the tobi and he's said his throat feels kinda scratching and his eyes burn a little, so figure that's probably what DS is feeling too.

 

[Ratatosk]

We give DS his Tobi at 6:15 a.m. and then about 6 p.m. We do the Pulmozyme at his last CPT treatment for the night around 10 pm. We do CPT/Vest while doing his bronchiodialtors (Albuterol/Atrovent). When that's done, we start up the tobi. We don't worry that much about the 12 hours. We've given it early (4 p.m.) and later at night (9:30 p.m.) when we've had other obligations -- going to a wedding, holidays... Only side effects we've noticed is that sometimes DS gets a stuffy, boogery nose, usually at the start he might sound a little froggy. My husband usually administers the tobi and he's said his throat feels kinda scratching and his eyes burn a little, so figure that's probably what DS is feeling too.

 

[Alyssa]

My daughters first (and only so far) PA infection was diagnosed late too because we didn't get a culture (our fault not the doctors - in 14 years she had never cultured anything but staph so we all just assumed that's what it was and gave her the usual antibiotics without a culture) so it was about 2 months before she started Tobi and Cipro. So to answer one of your questions, yes - my daughter was able to clear the PA without any IV antibiotics. I don't recall being told anything about waiting time between pulmozyme and Tobi -- only the order in which to do them and the reasoning behind the order:

1) Albuteral (same as Xopenex) to open up airways
2) CPT (get the gunk out)
3) Pulmozyme (thin the gunk)
4) CPT (get more gunk out)
5) Tobi (do last to try and make sure as much of the antibiotic stays in the lungs as
possible
6) Flovent

My daughter was in her teens so there is quite an age difference but I cannot see why that would change the recommended order of the drugs for any reason. I also think it is quite reasonable to skip #2 if necessary and just do CPT once after the Pulmozyme.

Yes, I think he probably will start to feel better soon and yes he probably was/is feeling worse than normal without antibiotics - my daughter didn't feel all that great either because she was on the wrong antibiotics... so they were not helping. The right antibiotics should help him feel better within a pretty short period of time.

 

[Alyssa]

My daughters first (and only so far) PA infection was diagnosed late too because we didn't get a culture (our fault not the doctors - in 14 years she had never cultured anything but staph so we all just assumed that's what it was and gave her the usual antibiotics without a culture) so it was about 2 months before she started Tobi and Cipro. So to answer one of your questions, yes - my daughter was able to clear the PA without any IV antibiotics. I don't recall being told anything about waiting time between pulmozyme and Tobi -- only the order in which to do them and the reasoning behind the order:

1) Albuteral (same as Xopenex) to open up airways
2) CPT (get the gunk out)
3) Pulmozyme (thin the gunk)
4) CPT (get more gunk out)
5) Tobi (do last to try and make sure as much of the antibiotic stays in the lungs as
possible
6) Flovent

My daughter was in her teens so there is quite an age difference but I cannot see why that would change the recommended order of the drugs for any reason. I also think it is quite reasonable to skip #2 if necessary and just do CPT once after the Pulmozyme.

Yes, I think he probably will start to feel better soon and yes he probably was/is feeling worse than normal without antibiotics - my daughter didn't feel all that great either because she was on the wrong antibiotics... so they were not helping. The right antibiotics should help him feel better within a pretty short period of time.

 

[Alyssa]

My daughters first (and only so far) PA infection was diagnosed late too because we didn't get a culture (our fault not the doctors - in 14 years she had never cultured anything but staph so we all just assumed that's what it was and gave her the usual antibiotics without a culture) so it was about 2 months before she started Tobi and Cipro. So to answer one of your questions, yes - my daughter was able to clear the PA without any IV antibiotics. I don't recall being told anything about waiting time between pulmozyme and Tobi -- only the order in which to do them and the reasoning behind the order:

1) Albuteral (same as Xopenex) to open up airways
2) CPT (get the gunk out)
3) Pulmozyme (thin the gunk)
4) CPT (get more gunk out)
5) Tobi (do last to try and make sure as much of the antibiotic stays in the lungs as
possible
6) Flovent

My daughter was in her teens so there is quite an age difference but I cannot see why that would change the recommended order of the drugs for any reason. I also think it is quite reasonable to skip #2 if necessary and just do CPT once after the Pulmozyme.

Yes, I think he probably will start to feel better soon and yes he probably was/is feeling worse than normal without antibiotics - my daughter didn't feel all that great either because she was on the wrong antibiotics... so they were not helping. The right antibiotics should help him feel better within a pretty short period of time.

 

[damiensmom]

Thank you. That helps alot. Damiens doctor said pulmazyme to close to tobi can increase bronchospazm. I have given my son his treatmeants and cpt while he slept now with the tobi it is hard pressed to keep to the schedule of 12 hours apart between tobi. We have ear problems and I worry about hearing loss in these antibiotics. Damiens doctor has told me she wants to send him to an E.N.T but one that is knowledgable in C.F . She said she will find us one and see if she can make the appoitments for the same time we go to see her. We travel 400 miles round trip. I thought that was very good of her. Small town doctors she said. HaHaHA I agree. . I hope he feels better quickly as your daughter did.

 

[damiensmom]

Thank you. That helps alot. Damiens doctor said pulmazyme to close to tobi can increase bronchospazm. I have given my son his treatmeants and cpt while he slept now with the tobi it is hard pressed to keep to the schedule of 12 hours apart between tobi. We have ear problems and I worry about hearing loss in these antibiotics. Damiens doctor has told me she wants to send him to an E.N.T but one that is knowledgable in C.F . She said she will find us one and see if she can make the appoitments for the same time we go to see her. We travel 400 miles round trip. I thought that was very good of her. Small town doctors she said. HaHaHA I agree. . I hope he feels better quickly as your daughter did.

 

[damiensmom]

Thank you. That helps alot. Damiens doctor said pulmazyme to close to tobi can increase bronchospazm. I have given my son his treatmeants and cpt while he slept now with the tobi it is hard pressed to keep to the schedule of 12 hours apart between tobi. We have ear problems and I worry about hearing loss in these antibiotics. Damiens doctor has told me she wants to send him to an E.N.T but one that is knowledgable in C.F . She said she will find us one and see if she can make the appoitments for the same time we go to see her. We travel 400 miles round trip. I thought that was very good of her. Small town doctors she said. HaHaHA I agree. . I hope he feels better quickly as your daughter did.