Pseudomonas?

[LisaGreene]

Hi All,
<br />I SO remember when my son first got pseud at 2. I was devastated, cried, felt like it was "the beginning of the end", wondered where I went wrong, and on and on. And now, 9 years later, he is doing very well and is a happy, healthy (considering he has CF) and very normal pre-teen (now that's something to be worried about <img src="i/expressions/face-icon-small-wink.gif" border="0">).
<br />
<br />There's not much you can do to prevent pseud (see my other post about this under the "parenting children with health issues" topic). My motto has always been: be prudent, not paranoid. The line can be a little fuzzy at times!
<br />
<br />The cipro and tobi did the trick for us- it went away for a long time with my son. Now, he does have it all the time but is doing well. In fact, he just got back from a week, alone (as in "no Mom!"), at boy scout camp.
<br />
<br />And, my daughter, age 9, has never cultured it. Same home, same lives, go figure....
<br />
<br />So, hang in there. I know it's scary but take heart- it doesn't mean that your child is going to go straight downhill. There are so many things they can do to slow it down. Love your kids, enjoy every moment. That's what it's all about.
<br />
<br />Hugs and hope,
<br />Lisa

 

[Ratatosk]

Pete,

When our son was diagnosed as a newborn, doctors would mention tobi and pseudo, but indicated it'd be something we'd deal with when he was much older -- teens? Fast forward to his first CF clinic appointment -- he was 3 months old hadn't been anywhere other than home and we were soooo careful in terms of hand washing/sanitizing and he cultured non-mucoid pseudo.

We were devastatd because at that point we were still a bit in denial. DS, didn't really have any respiratory symptoms, mostly digestive. The culturing pseudo really hit home the fact that DS DID in fact have cf. We were worried, felt like we'd been punched in the gut...

Our doctor prescribed tobi nebulized twice a day every other month, as well as another oral antibiotic. His baby/toddler/preschool years he was rarely sick -- a couple ear infections, a few colds that resolved themselves, a stomach bug once and a sinus infection. Probably the healthiest one in his daycare as the director would warn us about whatever illnesses were going around and we'd keep a close eye on him, expecting him to get sick. And he'd be fine.

Your doctor will at the very least probably prescribe tobi. Nebulized it should only take about 20-25 minutes. We found out the hard way that we had a faulty nebulizer because it ws taking 45-50 minutes.

 

[Ratatosk]

Pete,

When our son was diagnosed as a newborn, doctors would mention tobi and pseudo, but indicated it'd be something we'd deal with when he was much older -- teens? Fast forward to his first CF clinic appointment -- he was 3 months old hadn't been anywhere other than home and we were soooo careful in terms of hand washing/sanitizing and he cultured non-mucoid pseudo.

We were devastatd because at that point we were still a bit in denial. DS, didn't really have any respiratory symptoms, mostly digestive. The culturing pseudo really hit home the fact that DS DID in fact have cf. We were worried, felt like we'd been punched in the gut...

Our doctor prescribed tobi nebulized twice a day every other month, as well as another oral antibiotic. His baby/toddler/preschool years he was rarely sick -- a couple ear infections, a few colds that resolved themselves, a stomach bug once and a sinus infection. Probably the healthiest one in his daycare as the director would warn us about whatever illnesses were going around and we'd keep a close eye on him, expecting him to get sick. And he'd be fine.

Your doctor will at the very least probably prescribe tobi. Nebulized it should only take about 20-25 minutes. We found out the hard way that we had a faulty nebulizer because it ws taking 45-50 minutes.

 

[Ratatosk]

Pete,
<br />
<br />When our son was diagnosed as a newborn, doctors would mention tobi and pseudo, but indicated it'd be something we'd deal with when he was much older -- teens? Fast forward to his first CF clinic appointment -- he was 3 months old hadn't been anywhere other than home and we were soooo careful in terms of hand washing/sanitizing and he cultured non-mucoid pseudo.
<br />
<br />We were devastatd because at that point we were still a bit in denial. DS, didn't really have any respiratory symptoms, mostly digestive. The culturing pseudo really hit home the fact that DS DID in fact have cf. We were worried, felt like we'd been punched in the gut...
<br />
<br />Our doctor prescribed tobi nebulized twice a day every other month, as well as another oral antibiotic. His baby/toddler/preschool years he was rarely sick -- a couple ear infections, a few colds that resolved themselves, a stomach bug once and a sinus infection. Probably the healthiest one in his daycare as the director would warn us about whatever illnesses were going around and we'd keep a close eye on him, expecting him to get sick. And he'd be fine.
<br />
<br />Your doctor will at the very least probably prescribe tobi. Nebulized it should only take about 20-25 minutes. We found out the hard way that we had a faulty nebulizer because it ws taking 45-50 minutes.

 

[sdelorenzo]

My son cultured it at 12 months. I was also very upset. He used tobi and cipro for a few months. He has cultured it maybe three times since then (six years ago). Usually once every one or two years go by before it shows up on a culture. I think the Tobi does a great job of keeping it a bay. I My nine year old daughter has never cultured it, only staph. But her cat scan looked A LOT worse than my sons.
Sharon, mom of Sophia, 9 and Jack, 6 both with cf, Grant, 18 months no cf

 

[sdelorenzo]

My son cultured it at 12 months. I was also very upset. He used tobi and cipro for a few months. He has cultured it maybe three times since then (six years ago). Usually once every one or two years go by before it shows up on a culture. I think the Tobi does a great job of keeping it a bay. I My nine year old daughter has never cultured it, only staph. But her cat scan looked A LOT worse than my sons.
Sharon, mom of Sophia, 9 and Jack, 6 both with cf, Grant, 18 months no cf

 

[sdelorenzo]

My son cultured it at 12 months. I was also very upset. He used tobi and cipro for a few months. He has cultured it maybe three times since then (six years ago). Usually once every one or two years go by before it shows up on a culture. I think the Tobi does a great job of keeping it a bay. I My nine year old daughter has never cultured it, only staph. But her cat scan looked A LOT worse than my sons.
<br />Sharon, mom of Sophia, 9 and Jack, 6 both with cf, Grant, 18 months no cf

 

[ktsmom]

Lyndsi - how is Cameron doing now?
Pete - welcome!

Our daughter was diagnosed with CF at age 3 and cultured non-mucoid pseudo at her first clinic visit. It was mainly GI problems that lead to her diagnosis. So when the doc called with the culture results, I couldn't believe that we were "already" faced with PA. It truly brought the full impact of her diagnosis home.

He put us on oral Cipro for three months and TOBI for three months continuous, and then TOBI 28 on/off ever since. I used to post on here asking if anyone thought we could ever get off TOBI, but I've given that notion up. The good news is that she has not cultured PA since.

At the same time as we were put on TOBI, we were also put on a bronchodilator (we neb Albuterol if she is asleep, use a Xopenex inhaler if she is awake) and Pulmozyme. I've never been sure if we would have been put on those anyway, or if that was done because of the PA culture. So your child may already be on some nebulized meds. We have since joined the Denufosol study so we do that also.

Our TOBI takes 18 minutes each time (not that I'm counting, LOL!) so do investigate if it seems to be taking too much time. Our daughter uses the Bubbles mask with her neb.

Take heart! We understand where you are coming from and it is hard but it will get better.

 

[ktsmom]

Lyndsi - how is Cameron doing now?
Pete - welcome!

Our daughter was diagnosed with CF at age 3 and cultured non-mucoid pseudo at her first clinic visit. It was mainly GI problems that lead to her diagnosis. So when the doc called with the culture results, I couldn't believe that we were "already" faced with PA. It truly brought the full impact of her diagnosis home.

He put us on oral Cipro for three months and TOBI for three months continuous, and then TOBI 28 on/off ever since. I used to post on here asking if anyone thought we could ever get off TOBI, but I've given that notion up. The good news is that she has not cultured PA since.

At the same time as we were put on TOBI, we were also put on a bronchodilator (we neb Albuterol if she is asleep, use a Xopenex inhaler if she is awake) and Pulmozyme. I've never been sure if we would have been put on those anyway, or if that was done because of the PA culture. So your child may already be on some nebulized meds. We have since joined the Denufosol study so we do that also.

Our TOBI takes 18 minutes each time (not that I'm counting, LOL!) so do investigate if it seems to be taking too much time. Our daughter uses the Bubbles mask with her neb.

Take heart! We understand where you are coming from and it is hard but it will get better.

 

[ktsmom]

Lyndsi - how is Cameron doing now?
<br />Pete - welcome!
<br />
<br />Our daughter was diagnosed with CF at age 3 and cultured non-mucoid pseudo at her first clinic visit. It was mainly GI problems that lead to her diagnosis. So when the doc called with the culture results, I couldn't believe that we were "already" faced with PA. It truly brought the full impact of her diagnosis home.
<br />
<br />He put us on oral Cipro for three months and TOBI for three months continuous, and then TOBI 28 on/off ever since. I used to post on here asking if anyone thought we could ever get off TOBI, but I've given that notion up. The good news is that she has not cultured PA since.
<br />
<br />At the same time as we were put on TOBI, we were also put on a bronchodilator (we neb Albuterol if she is asleep, use a Xopenex inhaler if she is awake) and Pulmozyme. I've never been sure if we would have been put on those anyway, or if that was done because of the PA culture. So your child may already be on some nebulized meds. We have since joined the Denufosol study so we do that also.
<br />
<br />Our TOBI takes 18 minutes each time (not that I'm counting, LOL!) so do investigate if it seems to be taking too much time. Our daughter uses the Bubbles mask with her neb.
<br />
<br />Take heart! We understand where you are coming from and it is hard but it will get better.

 

[annasdad]

Hi everyone:

I logged on yesterday evening and got your resposes, and was trying to post a thank you when the power went out during a storm. I can't stress enough how reading your responses helped us get through the night. With nobody to talk to and a power failure, I think last night might have been incredibly depressing. Instead, my wife, anna, and I ended up having a pretty nice night, and it was more about our togetherness than our fears.

In the long run I suppose we'd end up in the same place, but for last night you guys really made a difference for us.

I do have some questions. Anna's lab report says she has "nonencapsulated" PA. Is that signficiant? Also it doesn't mention whether it's mucoid or not. What does that mean and how do we know which it is? Also, is Cipro an oral antibiotic? We know about Tobi but not Cipro.

ktsmom, I think I can give you some prespective on your situation. Anna was diagnosed at birth due to a blockage in her intestinal track, so she's had her CF doctor's help since she was a week old. We have been doing Xopenex treatments along with "the pats," as we call them, twice a day, since she was about 3 months old. So I'm guessing that even if you didn't have the PA on diagnosis, you'd still be doing at least the Xopenex/Albuterol treatments every day.

Thanks again everyone. I'll try and pop in from time to time and not be a stranger.

Pete (is glad you guys are here)

 

[annasdad]

Hi everyone:

I logged on yesterday evening and got your resposes, and was trying to post a thank you when the power went out during a storm. I can't stress enough how reading your responses helped us get through the night. With nobody to talk to and a power failure, I think last night might have been incredibly depressing. Instead, my wife, anna, and I ended up having a pretty nice night, and it was more about our togetherness than our fears.

In the long run I suppose we'd end up in the same place, but for last night you guys really made a difference for us.

I do have some questions. Anna's lab report says she has "nonencapsulated" PA. Is that signficiant? Also it doesn't mention whether it's mucoid or not. What does that mean and how do we know which it is? Also, is Cipro an oral antibiotic? We know about Tobi but not Cipro.

ktsmom, I think I can give you some prespective on your situation. Anna was diagnosed at birth due to a blockage in her intestinal track, so she's had her CF doctor's help since she was a week old. We have been doing Xopenex treatments along with "the pats," as we call them, twice a day, since she was about 3 months old. So I'm guessing that even if you didn't have the PA on diagnosis, you'd still be doing at least the Xopenex/Albuterol treatments every day.

Thanks again everyone. I'll try and pop in from time to time and not be a stranger.

Pete (is glad you guys are here)

 

[annasdad]

Hi everyone:
<br />
<br />I logged on yesterday evening and got your resposes, and was trying to post a thank you when the power went out during a storm. I can't stress enough how reading your responses helped us get through the night. With nobody to talk to and a power failure, I think last night might have been incredibly depressing. Instead, my wife, anna, and I ended up having a pretty nice night, and it was more about our togetherness than our fears.
<br />
<br />In the long run I suppose we'd end up in the same place, but for last night you guys really made a difference for us.
<br />
<br />I do have some questions. Anna's lab report says she has "nonencapsulated" PA. Is that signficiant? Also it doesn't mention whether it's mucoid or not. What does that mean and how do we know which it is? Also, is Cipro an oral antibiotic? We know about Tobi but not Cipro.
<br />
<br />ktsmom, I think I can give you some prespective on your situation. Anna was diagnosed at birth due to a blockage in her intestinal track, so she's had her CF doctor's help since she was a week old. We have been doing Xopenex treatments along with "the pats," as we call them, twice a day, since she was about 3 months old. So I'm guessing that even if you didn't have the PA on diagnosis, you'd still be doing at least the Xopenex/Albuterol treatments every day.
<br />
<br />Thanks again everyone. I'll try and pop in from time to time and not be a stranger.
<br />
<br />Pete (is glad you guys are here)

 

[Ratatosk]

Cipro is an oral antibiotic. Not sure about incapsulated vs. nonincapulated. If you received the written report -- lab results it should indicated whether there's a rare (small) amount. And what the pseudo is sensitive or resistant to, so they can choose the best abx to treat it with.

 

[Ratatosk]

Cipro is an oral antibiotic. Not sure about incapsulated vs. nonincapulated. If you received the written report -- lab results it should indicated whether there's a rare (small) amount. And what the pseudo is sensitive or resistant to, so they can choose the best abx to treat it with.

 

[Ratatosk]

Cipro is an oral antibiotic. Not sure about incapsulated vs. nonincapulated. If you received the written report -- lab results it should indicated whether there's a rare (small) amount. And what the pseudo is sensitive or resistant to, so they can choose the best abx to treat it with.

 

[annasdad]

OK, I got some answers from the doctor (on a Saturday!). Non-encapsulated is apparently the same thing as non-mucoid. The strain is sensitive to most medications, so we're optimistic. Thanks for answering Ratatosk, you were right on the spot!

Pete (is feeling a lot better today)

 

[annasdad]

OK, I got some answers from the doctor (on a Saturday!). Non-encapsulated is apparently the same thing as non-mucoid. The strain is sensitive to most medications, so we're optimistic. Thanks for answering Ratatosk, you were right on the spot!

Pete (is feeling a lot better today)

 

[annasdad]

OK, I got some answers from the doctor (on a Saturday!). Non-encapsulated is apparently the same thing as non-mucoid. The strain is sensitive to most medications, so we're optimistic. Thanks for answering Ratatosk, you were right on the spot!
<br />
<br />Pete (is feeling a lot better today)

 

[mom2cameron]

Sorry I have been away...we just got Camerons new culture results back Wednesday...no pseudo! I still feel like its not true for some strange reason though. (I keep thinking maybe he didn't give a good enough culture sample) Hope its not hiding way down in there. He didn't have any symptoms with it at all which I think made it a bit more bearable on my mental state <img src="i/expressions/face-icon-small-wink.gif" border="0">. He has been doing so good this summer...He usually has a cough all the time (well 3-5 times a day kinda fits) Since its been hot outside that has went away. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We have a cf clinic appt on Tuesday and will get cultured again so I pray that this one will come back clear too.

I would definitely get a different nebulizer if its taking over 25 mins...the first time we were on cipro for a different infection it was taking 45-50 mins to neb...we were miserable and so was he...this time around we got a new cup and a new machine, made all the difference! It took about 20 mins...much more better for his little impatient butt! <img src="i/expressions/face-icon-small-wink.gif" border="0">

To Pete: I hope you guys are doing ok with this...I would definitely ask about doing tobi and cipro together to get rid of it. Our doctors told us the first time they culture it they can usually get it gone with using both meds. They said they usually dont culture it again for awhile after that....we will see about that one though. Good luck!