Cayston for younger children and toddlers

[adillsworth]

My 2yr son Braden cultured psuedomonas for the third time since birth this past month. We then did at home tobi and cipro only to reculture it again. We were just released from the hospital today after doing a week on antibio. His Dr felt that because he was doing so good that keeping him in the hospital and being exposed to all the other things it would be better to finish at home. My question is (sorry it took so long to get here) they brought up maybe doing cayston instead of tobi every other month. I haven't seen many if any parents of young children talking about cayston instead of tobi. Is anyone giving cayston to a younger child and if so how are things going? Any thoughts? His Dr's main concern with tobi was the long term effects on hearing and his liver.

 

[adillsworth]

My 2yr son Braden cultured psuedomonas for the third time since birth this past month. We then did at home tobi and cipro only to reculture it again. We were just released from the hospital today after doing a week on antibio. His Dr felt that because he was doing so good that keeping him in the hospital and being exposed to all the other things it would be better to finish at home. My question is (sorry it took so long to get here) they brought up maybe doing cayston instead of tobi every other month. I haven't seen many if any parents of young children talking about cayston instead of tobi. Is anyone giving cayston to a younger child and if so how are things going? Any thoughts? His Dr's main concern with tobi was the long term effects on hearing and his liver.

 

[adillsworth]

<p>My 2yr son Braden cultured psuedomonas for the third time since birth this past month. We then did at home tobi and cipro only to reculture it again. We were just released from the hospital today after doing a week on antibio. His Dr felt that because he was doing so good that keeping him in the hospital and being exposed to all the other things it would be better to finish at home. My question is (sorry it took so long to get here) they brought up maybe doing cayston instead of tobi every other month. I haven't seen many if any parents of young children talking about cayston instead of tobi. Is anyone giving cayston to a younger child and if so how are things going? Any thoughts? His Dr's main concern with tobi was the long term effects on hearing and his liver.

 

[MaryamsMommy]

I think Tobi is not usually used to get rid of PA it is actually used to treat colonization just kinda keep things at bay.But have herd of people actually having it go away.. Is there a reason they are concerned about your sons liver and hearing? Does he already have issues with it. If not I would assume that he would be just like anyone else on Tobi. How old is he? My only concern about cayston would be if he is not yet doing the mouth piece for his treatments. I dont think you can use a mask with it and the treatment last less then 2 min. So you would want to make sure he is actually sucking in on it the intire time as not to waist it. There really is no room for waist with it and you want to make sure it all gets into his lungs. My daughter is 11 and we alternate Tobi Cayston. So for the months she is off Tobi she is on Cayston. Usually they switch from tobi to cayston when the PA develops more resistance.

 

[MaryamsMommy]

I thinkTobi is not usually used to get rid of PA it is actually used to treat colonization just kinda keep things at bay.But have herd of people actually having it go away.. Is there a reason they are concerned about your sons liver and hearing? Does he already have issues with it. If not I would assume that he would be just like anyone else on Tobi. How old is he? My only concern about cayston would be if he is not yet doing the mouth piece for his treatments. I dont think you can use a mask with it and the treatment last less then 2 min. So you would want to make sure he is actually sucking in on it the intire time as not to waist it. There really is no room for waist with it and you want to make sure it all gets into his lungs. My daughter is 11 and we alternate Tobi Cayston. So for the months she is off Tobi she is on Cayston. Usually they switch from tobi to cayston when the PA develops more resistance.

 

[MaryamsMommy]

<p>I thinkTobi is not usually used to get rid of PA it is actually used to treat colonization just kinda keep things at bay.But have herd of people actually having it go away.. Is there a reason they are concerned about your sons liver and hearing? Does he already have issues with it. If not I would assume that he would be just like anyone else on Tobi. How old is he? My only concern about cayston would be if he is not yet doing the mouth piece for his treatments. I dont think you can use a mask with it and the treatment last less then 2 min. So you would want to make sure he is actually sucking in on it the intire time as not to waist it. There really is no room for waist with it and you want to make sure it all gets into his lungs. My daughter is 11 and we alternate Tobi Cayston. So for the months she is off Tobi she is on Cayston. Usually they switch from tobi to cayston when the PA develops more resistance.

 

[adillsworth]

Thanks for replying. He doesn't have any hearing or liver problems by what his Dr said it is long term side effects of tobi and since he will be on it longterm it was her concern. He's only two and does the mask so using the mouth piece would be something new. Thanks for bringing it up. I've only seen the cayston machine at educational day and it was very quick. We don't go back to clinic until the 1st so we have time to consider everything. Thanks again.

 

[adillsworth]

Thanks for replying. He doesn't have any hearing or liver problems by what his Dr said it is long term side effects of tobi and since he will be on it longterm it was her concern. He's only two and does the mask so using the mouth piece would be something new. Thanks for bringing it up. I've only seen the cayston machine at educational day and it was very quick. We don't go back to clinic until the 1st so we have time to consider everything. Thanks again.

 

[adillsworth]

<p>Thanks for replying. He doesn't have any hearing or liver problems by what his Dr said it is long term side effects of tobi and since he will be on it longterm it was her concern. He's only two and does the mask so using the mouth piece would be something new. Thanks for bringing it up. I've only seen the cayston machine at educational day and it was very quick. We don't go back to clinic until the 1st so we have time to consider everything. Thanks again.

 

[just1more]

To clarify: Tobi is an inhaled form of Tobramycin, one of the most common antibiotics for Psuedomonas. As such, it is the first line of defense for CF patients with Pseudo.

Cayston is a different antibiotic, also targeting Psuedo, that has only been on the market for 6 months.

Since Casyton is so new, most of the patients taking it have developed Pseudomonas that is resistant to Tobi or have developed side effects. Thus, mostly older patients. Over time this will change but you normally need a reason to justify changing.

Our 1st shipment of Cayston arrived this morning via FedEx, but my son hasn't cultured anything that was susceptible to Tobi in 2+ years; so when he finally had an exacerbation, we switched hoping that Cayston will have an impact. Plus, we are in IV's right now so that should give it a head-start in killing the Psuedo.

 

[just1more]

To clarify: Tobi is an inhaled form of Tobramycin, one of the most common antibiotics for Psuedomonas. As such, it is the first line of defense for CF patients with Pseudo.

Cayston is a different antibiotic, also targeting Psuedo, that has only been on the market for 6 months.

Since Casyton is so new, most of the patients taking it have developed Pseudomonas that is resistant to Tobi or have developed side effects. Thus, mostly older patients. Over time this will change but you normally need a reason to justify changing.

Our 1st shipment of Cayston arrived this morning via FedEx, but my son hasn't cultured anything that was susceptible to Tobi in 2+ years; so when he finally had an exacerbation, we switched hoping that Cayston will have an impact. Plus, we are in IV's right now so that should give it a head-start in killing the Psuedo.

 

[just1more]

To clarify: Tobi is an inhaled form of Tobramycin, one of the most common antibiotics for Psuedomonas. As such, it is the first line of defense for CF patients with Pseudo.
<br />
<br />Cayston is a different antibiotic, also targeting Psuedo, that has only been on the market for 6 months.
<br />
<br />Since Casyton is so new, most of the patients taking it have developed Pseudomonas that is resistant to Tobi or have developed side effects. Thus, mostly older patients. Over time this will change but you normally need a reason to justify changing.
<br />
<br />Our 1st shipment of Cayston arrived this morning via FedEx, but my son hasn't cultured anything that was susceptible to Tobi in 2+ years; so when he finally had an exacerbation, we switched hoping that Cayston will have an impact. Plus, we are in IV's right now so that should give it a head-start in killing the Psuedo.