Jen- There are different schools of thought on whether pseudo can be kicked or not. Some think that once you've cultured it 2x, even if another culture is clear, it's still there, just not showing up on the cultures. Others think you can get rid of it. Piper was culturing it at diagnosis (4 months old), and cultured it until she was 4 or so. In those 4 yrs, she had around 4 hospitalizations. Not great, but not horrible. I'd like to think it's gone, but we've continued doing TOBI, etc. I would say what they're doing with the TOBI and Cipro is pretty typical as long as he's asymptomatic. I know it's hard, but try not to let it get you too worried. *hug*
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MDad</b></i>
Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.
Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.
and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.</end quote></div>
As I was telling Jen, Piper has been doing nebs since 4 months old. I don't think there is an easy way to do them or the cpt, to be honest. We had good days and horrible days with it. One thing she did LOVE was the baby einstein videos, even at a young age, there's only one thing on the screen at a time for the most part, and easy to focus on..also catchy music. On the bad days I just repeatedly told myself that it was better to have her crying/screaming over nebs and CPT at home than to have her crying over IV's and PICC lines in the hospital! As for the TOBI dosage, Piper was in the clinical trials, and nebbed one dose in the morning, and one dose in the evening, and continues to use that dosage. (1 dose = 1 ampule). Hoped this helped some, and sorry to be not too helpful with the nebs/cpt! Just keep measuring until she's big enough for the vest..I swear once Piper got close I was measuring her chest once a week..LOL!
Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.
Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.
and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.</end quote></div>
As I was telling Jen, Piper has been doing nebs since 4 months old. I don't think there is an easy way to do them or the cpt, to be honest. We had good days and horrible days with it. One thing she did LOVE was the baby einstein videos, even at a young age, there's only one thing on the screen at a time for the most part, and easy to focus on..also catchy music. On the bad days I just repeatedly told myself that it was better to have her crying/screaming over nebs and CPT at home than to have her crying over IV's and PICC lines in the hospital! As for the TOBI dosage, Piper was in the clinical trials, and nebbed one dose in the morning, and one dose in the evening, and continues to use that dosage. (1 dose = 1 ampule). Hoped this helped some, and sorry to be not too helpful with the nebs/cpt! Just keep measuring until she's big enough for the vest..I swear once Piper got close I was measuring her chest once a week..LOL!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MDad</b></i>
Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.
Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.
and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.</end quote>
As I was telling Jen, Piper has been doing nebs since 4 months old. I don't think there is an easy way to do them or the cpt, to be honest. We had good days and horrible days with it. One thing she did LOVE was the baby einstein videos, even at a young age, there's only one thing on the screen at a time for the most part, and easy to focus on..also catchy music. On the bad days I just repeatedly told myself that it was better to have her crying/screaming over nebs and CPT at home than to have her crying over IV's and PICC lines in the hospital! As for the TOBI dosage, Piper was in the clinical trials, and nebbed one dose in the morning, and one dose in the evening, and continues to use that dosage. (1 dose = 1 ampule). Hoped this helped some, and sorry to be not too helpful with the nebs/cpt! Just keep measuring until she's big enough for the vest..I swear once Piper got close I was measuring her chest once a week..LOL!
Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.
Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.
and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.</end quote>
As I was telling Jen, Piper has been doing nebs since 4 months old. I don't think there is an easy way to do them or the cpt, to be honest. We had good days and horrible days with it. One thing she did LOVE was the baby einstein videos, even at a young age, there's only one thing on the screen at a time for the most part, and easy to focus on..also catchy music. On the bad days I just repeatedly told myself that it was better to have her crying/screaming over nebs and CPT at home than to have her crying over IV's and PICC lines in the hospital! As for the TOBI dosage, Piper was in the clinical trials, and nebbed one dose in the morning, and one dose in the evening, and continues to use that dosage. (1 dose = 1 ampule). Hoped this helped some, and sorry to be not too helpful with the nebs/cpt! Just keep measuring until she's big enough for the vest..I swear once Piper got close I was measuring her chest once a week..LOL!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MDad</b></i>
<br />
<br />Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.
<br />
<br />
<br />
<br />Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.
<br />
<br />
<br />
<br />and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.</end quote>
<br />
<br />As I was telling Jen, Piper has been doing nebs since 4 months old. I don't think there is an easy way to do them or the cpt, to be honest. We had good days and horrible days with it. One thing she did LOVE was the baby einstein videos, even at a young age, there's only one thing on the screen at a time for the most part, and easy to focus on..also catchy music. On the bad days I just repeatedly told myself that it was better to have her crying/screaming over nebs and CPT at home than to have her crying over IV's and PICC lines in the hospital! As for the TOBI dosage, Piper was in the clinical trials, and nebbed one dose in the morning, and one dose in the evening, and continues to use that dosage. (1 dose = 1 ampule). Hoped this helped some, and sorry to be not too helpful with the nebs/cpt! Just keep measuring until she's big enough for the vest..I swear once Piper got close I was measuring her chest once a week..LOL!
<br />
<br />Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.
<br />
<br />
<br />
<br />Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.
<br />
<br />
<br />
<br />and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.</end quote>
<br />
<br />As I was telling Jen, Piper has been doing nebs since 4 months old. I don't think there is an easy way to do them or the cpt, to be honest. We had good days and horrible days with it. One thing she did LOVE was the baby einstein videos, even at a young age, there's only one thing on the screen at a time for the most part, and easy to focus on..also catchy music. On the bad days I just repeatedly told myself that it was better to have her crying/screaming over nebs and CPT at home than to have her crying over IV's and PICC lines in the hospital! As for the TOBI dosage, Piper was in the clinical trials, and nebbed one dose in the morning, and one dose in the evening, and continues to use that dosage. (1 dose = 1 ampule). Hoped this helped some, and sorry to be not too helpful with the nebs/cpt! Just keep measuring until she's big enough for the vest..I swear once Piper got close I was measuring her chest once a week..LOL!
While this isn't the greatest news your child has so many options today to treat his PA. Most of us adults started culturing PA at a very young age and have had it ever since. When I was diagnosed at 2.5 yrs old I already had PA. I am now 32 with an FEV1 of 72% ...things could be A LOT worse. That said I believe once PA re-occurs it's TOBI on/off for the remainder of time. Well actually until you become resistant and then it's colistin and then Cayston but who knows what the protocol will be by the time he gets to this age. I would expect him to get 1-2 decades out of TOBI.
While this isn't the greatest news your child has so many options today to treat his PA. Most of us adults started culturing PA at a very young age and have had it ever since. When I was diagnosed at 2.5 yrs old I already had PA. I am now 32 with an FEV1 of 72% ...things could be A LOT worse. That said I believe once PA re-occurs it's TOBI on/off for the remainder of time. Well actually until you become resistant and then it's colistin and then Cayston but who knows what the protocol will be by the time he gets to this age. I would expect him to get 1-2 decades out of TOBI.
While this isn't the greatest news your child has so many options today to treat his PA. Most of us adults started culturing PA at a very young age and have had it ever since. When I was diagnosed at 2.5 yrs old I already had PA. I am now 32 with an FEV1 of 72% ...things could be A LOT worse. That said I believe once PA re-occurs it's TOBI on/off for the remainder of time. Well actually until you become resistant and then it's colistin and then Cayston but who knows what the protocol will be by the time he gets to this age. I would expect him to get 1-2 decades out of TOBI.