Child with recently aquired psuedomonas...questions

[keeperofthegoodness]

Hi all!

This is my first time on this board. My son is almost 4 and has been really healthy up until recently. He cultured a pseudomonas strain and has had a really progressive cough. The Dr's are wanting to do oral cipro, tobi (inhaled) and start pulmozyme. We haven't had to really do any treatments like this before, so naturally I am nervous. I am looking to see what others experiences have been like while undergoing these treatments? Once started, are we going to be in a downward spiral of more and more antibiotics? Does the cough ever clear if the infection clears? Basicly what can I expect and has anyone had any weird side effects from these sorts of treatments?

Thanks in advance!
Alicia

 

[keeperofthegoodness]

Hi all!

This is my first time on this board. My son is almost 4 and has been really healthy up until recently. He cultured a pseudomonas strain and has had a really progressive cough. The Dr's are wanting to do oral cipro, tobi (inhaled) and start pulmozyme. We haven't had to really do any treatments like this before, so naturally I am nervous. I am looking to see what others experiences have been like while undergoing these treatments? Once started, are we going to be in a downward spiral of more and more antibiotics? Does the cough ever clear if the infection clears? Basicly what can I expect and has anyone had any weird side effects from these sorts of treatments?

Thanks in advance!
Alicia

 

[keeperofthegoodness]

Hi all!
<br />
<br />This is my first time on this board. My son is almost 4 and has been really healthy up until recently. He cultured a pseudomonas strain and has had a really progressive cough. The Dr's are wanting to do oral cipro, tobi (inhaled) and start pulmozyme. We haven't had to really do any treatments like this before, so naturally I am nervous. I am looking to see what others experiences have been like while undergoing these treatments? Once started, are we going to be in a downward spiral of more and more antibiotics? Does the cough ever clear if the infection clears? Basicly what can I expect and has anyone had any weird side effects from these sorts of treatments?
<br />
<br />Thanks in advance!
<br />Alicia

 

[BRANDONBL79]

I just found this site, and this is my first post. I know how you feel. I have the same concerns and worries. Our 3 year old has acquired psuedomonas. As well. Our tobi should be arrivingg in the mail over the next day or so. His cough has subsided somewhat, even before we started any treatments. Ii am hoppeful that his tobi will work wonders.. So, I wish you luck and second your request for input from others who have beeen down this road.

Brandon Blake

 

[BRANDONBL79]

I just found this site, and this is my first post. I know how you feel. I have the same concerns and worries. Our 3 year old has acquired psuedomonas. As well. Our tobi should be arrivingg in the mail over the next day or so. His cough has subsided somewhat, even before we started any treatments. Ii am hoppeful that his tobi will work wonders.. So, I wish you luck and second your request for input from others who have beeen down this road.

Brandon Blake

 

[BRANDONBL79]

I just found this site, and this is my first post. I know how you feel. I have the same concerns and worries. Our 3 year old has acquired psuedomonas. As well. Our tobi should be arrivingg in the mail over the next day or so. His cough has subsided somewhat, even before we started any treatments. Ii am hoppeful that his tobi will work wonders.. So, I wish you luck and second your request for input from others who have beeen down this road.
<br />
<br />Brandon Blake

 

[hmw]

I'd like to welcome both of you to the site. <img src="i/expressions/rose.gif" border="0"> You'll find so much information and support here. It means so much to be able to connect with others that are going through the same challenges.

My daughter hasn't cultured PA yet so we haven't had to do any of the inhaled antibiotics but many of the parents here have been through this and can provide input for you.

Emily is on Pulmozyme and tolerates it very well. Her PFT's went up by more than 10% after she started it and have stayed up over a year so we've definitely seen it as a good medication for her! I hope he responds well to it and does well w/ the Tobi and Cipro too. I can certainly understand your being nervous about starting so much all at once... I hope it helps to know that Tobi & Cipro is a very common (and effective) combination to use when someone cultures PA.

Wishing the very best for both of your children and hope to get to know both of you more here. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

I'd like to welcome both of you to the site. <img src="i/expressions/rose.gif" border="0"> You'll find so much information and support here. It means so much to be able to connect with others that are going through the same challenges.

My daughter hasn't cultured PA yet so we haven't had to do any of the inhaled antibiotics but many of the parents here have been through this and can provide input for you.

Emily is on Pulmozyme and tolerates it very well. Her PFT's went up by more than 10% after she started it and have stayed up over a year so we've definitely seen it as a good medication for her! I hope he responds well to it and does well w/ the Tobi and Cipro too. I can certainly understand your being nervous about starting so much all at once... I hope it helps to know that Tobi & Cipro is a very common (and effective) combination to use when someone cultures PA.

Wishing the very best for both of your children and hope to get to know both of you more here. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

I'd like to welcome both of you to the site. <img src="i/expressions/rose.gif" border="0"> You'll find so much information and support here. It means so much to be able to connect with others that are going through the same challenges.
<br />
<br />My daughter hasn't cultured PA yet so we haven't had to do any of the inhaled antibiotics but many of the parents here have been through this and can provide input for you.
<br />
<br />Emily is on Pulmozyme and tolerates it very well. Her PFT's went up by more than 10% after she started it and have stayed up over a year so we've definitely seen it as a good medication for her! I hope he responds well to it and does well w/ the Tobi and Cipro too. I can certainly understand your being nervous about starting so much all at once... I hope it helps to know that Tobi & Cipro is a very common (and effective) combination to use when someone cultures PA.
<br />
<br />Wishing the very best for both of your children and hope to get to know both of you more here. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[traxster]

My son cultured PA and first they tried levaquin and when it was done, there was still some left, so now he is on Tobi and Cipro. He started the first Tobi last night. Since he has been wheezing, we have to do albuterol first and then the Tobi since Tobi can cause some bronchiospasms. He is on it and cipro for two weeks.

One thing I will say about the Tobi is that it takes forever! It took 45 minutes for the treatment to complete this morning. So far, he is tolerating it well.

 

[traxster]

My son cultured PA and first they tried levaquin and when it was done, there was still some left, so now he is on Tobi and Cipro. He started the first Tobi last night. Since he has been wheezing, we have to do albuterol first and then the Tobi since Tobi can cause some bronchiospasms. He is on it and cipro for two weeks.

One thing I will say about the Tobi is that it takes forever! It took 45 minutes for the treatment to complete this morning. So far, he is tolerating it well.

 

[traxster]

My son cultured PA and first they tried levaquin and when it was done, there was still some left, so now he is on Tobi and Cipro. He started the first Tobi last night. Since he has been wheezing, we have to do albuterol first and then the Tobi since Tobi can cause some bronchiospasms. He is on it and cipro for two weeks.
<br />
<br />One thing I will say about the Tobi is that it takes forever! It took 45 minutes for the treatment to complete this morning. So far, he is tolerating it well.

 

[Ratatosk]

Traxter -- Tobi should only take 20-25 minutes. We had similar issues when DS was younger when it took 45-50 minutes and it turned out the pari proneb ultra compressor we had was faulty!

DS cultured pseudo (non-mucoid) at 3 months. It was one of those things we were warned about, but it sounded like it'd be when he was much older. He had no symptoms. He started tobi -- twice a day for 28 days then 28 days off. We also increased cpt treatments from 3 to 4 times a day.

When he was 4 he developed a cough and his doctor added cipro to the mix and he his cough cleared up after a day or so.

I think the worst part for us was that with the pseudo, it really hit home that DS actually DID have CF. Prior to that, no symptoms other than digestive and we just had a little inkling of doubt that maybe the tests were wrong. So it felt as if DS was being diagnosed all over again.

 

[Ratatosk]

Traxter -- Tobi should only take 20-25 minutes. We had similar issues when DS was younger when it took 45-50 minutes and it turned out the pari proneb ultra compressor we had was faulty!

DS cultured pseudo (non-mucoid) at 3 months. It was one of those things we were warned about, but it sounded like it'd be when he was much older. He had no symptoms. He started tobi -- twice a day for 28 days then 28 days off. We also increased cpt treatments from 3 to 4 times a day.

When he was 4 he developed a cough and his doctor added cipro to the mix and he his cough cleared up after a day or so.

I think the worst part for us was that with the pseudo, it really hit home that DS actually DID have CF. Prior to that, no symptoms other than digestive and we just had a little inkling of doubt that maybe the tests were wrong. So it felt as if DS was being diagnosed all over again.

 

[Ratatosk]

Traxter -- Tobi should only take 20-25 minutes. We had similar issues when DS was younger when it took 45-50 minutes and it turned out the pari proneb ultra compressor we had was faulty!
<br />
<br />DS cultured pseudo (non-mucoid) at 3 months. It was one of those things we were warned about, but it sounded like it'd be when he was much older. He had no symptoms. He started tobi -- twice a day for 28 days then 28 days off. We also increased cpt treatments from 3 to 4 times a day.
<br />
<br />When he was 4 he developed a cough and his doctor added cipro to the mix and he his cough cleared up after a day or so.
<br />
<br />I think the worst part for us was that with the pseudo, it really hit home that DS actually DID have CF. Prior to that, no symptoms other than digestive and we just had a little inkling of doubt that maybe the tests were wrong. So it felt as if DS was being diagnosed all over again.

 

[CFmami]

Welcome to the site. This is a great place to learn and share with people going through the same. My 5 year old hasn't cultured anything yet. We haven't used inhaled antibiotics but she is on Hypertonic Saline and Pulmozyme once a day. She is starting to show more mucus production since we started Hypertonic Saline. I hope everything goes well for you both.

 

[CFmami]

Welcome to the site. This is a great place to learn and share with people going through the same. My 5 year old hasn't cultured anything yet. We haven't used inhaled antibiotics but she is on Hypertonic Saline and Pulmozyme once a day. She is starting to show more mucus production since we started Hypertonic Saline. I hope everything goes well for you both.

 

[CFmami]

Welcome to the site. This is a great place to learn and share with people going through the same. My 5 year old hasn't cultured anything yet. We haven't used inhaled antibiotics but she is on Hypertonic Saline and Pulmozyme once a day. She is starting to show more mucus production since we started Hypertonic Saline. I hope everything goes well for you both.

 

[ashmomo]

Both my children have cultured Psuedo at times and they both took that combination of meds. They both did well with them (both still on Saline and Pulmozyme and do very well with them). The cough will get back to baseline (or none if that was the baseline). Tobi does take a long time to neb <img src="i/expressions/face-icon-small-blush.gif" border="0">( Hopefully you can do it this once and not have to do it again for a long time!

It is dif from person to person. This should not lead to a road of abx, but who knows. It just depends on how much in in there and if it is eraticated the first time. Hopefully so! Hang in there. Hope all goes well. PM me if you have any questions. I have a 5 year old and 1 year old both w/ CF.

 

[ashmomo]

Both my children have cultured Psuedo at times and they both took that combination of meds. They both did well with them (both still on Saline and Pulmozyme and do very well with them). The cough will get back to baseline (or none if that was the baseline). Tobi does take a long time to neb <img src="i/expressions/face-icon-small-blush.gif" border="0">( Hopefully you can do it this once and not have to do it again for a long time!

It is dif from person to person. This should not lead to a road of abx, but who knows. It just depends on how much in in there and if it is eraticated the first time. Hopefully so! Hang in there. Hope all goes well. PM me if you have any questions. I have a 5 year old and 1 year old both w/ CF.