please help need advice

JENNYLEE202020

New member
i will try to make this as short as possible, my 3 year old son kaiden has been growing psudemonis
for awhile now, the cf center has messed up on his gag culture 3 times now and of course they deny it, the last 3 times they did his gag culture we noticed they didnt make him cough or anything, and the test results came back negative for psudemonis, each time we demanded they retest him becuase their was still no improvment, they did
it again &it came back positive for psudemonis, but they say he must have "re-grow'n it" this is to much of a Coincidence! so needless to say we are behind about a month each time they messed up, we have been fighting the psudemonis for 4 months now, we did tobi for a month then kaiden was admitted in the end of november for iv meds, then did another month of tobi, and now were doing it again. this time they want him to do a month of tobi then a month of Colistin then a month of tobi. which dosent make sense since we have tried the tobi already so many times at home now!
i want to get another opnion but dont know how we can afford it because his medicade wont pay for out of town doctors. so any advice in this area would be great because i am emotionally drained at this point i feel like im drowning, my next question is about the colistin, i read it is not fda approved to run through the nebulizer and a person with cf died from doing it. also is can cause respiratory distress along with a long list of others. have anyone used this on their child? how old were they? how often do they do it? have you seen any side affects? can this harm kaiden when he gets older? if we dont get rid of the psudemonis and he uses this colistin now will it work in the future if the infection gets bad or makes him sick? im so sorry for so many ?'s i just dont know what to do! thank you all so much i just really need help and when you question the doctors here they get irritated it seems like but this is my baby
 

JENNYLEE202020

New member
i will try to make this as short as possible, my 3 year old son kaiden has been growing psudemonis
for awhile now, the cf center has messed up on his gag culture 3 times now and of course they deny it, the last 3 times they did his gag culture we noticed they didnt make him cough or anything, and the test results came back negative for psudemonis, each time we demanded they retest him becuase their was still no improvment, they did
it again &it came back positive for psudemonis, but they say he must have "re-grow'n it" this is to much of a Coincidence! so needless to say we are behind about a month each time they messed up, we have been fighting the psudemonis for 4 months now, we did tobi for a month then kaiden was admitted in the end of november for iv meds, then did another month of tobi, and now were doing it again. this time they want him to do a month of tobi then a month of Colistin then a month of tobi. which dosent make sense since we have tried the tobi already so many times at home now!
i want to get another opnion but dont know how we can afford it because his medicade wont pay for out of town doctors. so any advice in this area would be great because i am emotionally drained at this point i feel like im drowning, my next question is about the colistin, i read it is not fda approved to run through the nebulizer and a person with cf died from doing it. also is can cause respiratory distress along with a long list of others. have anyone used this on their child? how old were they? how often do they do it? have you seen any side affects? can this harm kaiden when he gets older? if we dont get rid of the psudemonis and he uses this colistin now will it work in the future if the infection gets bad or makes him sick? im so sorry for so many ?'s i just dont know what to do! thank you all so much i just really need help and when you question the doctors here they get irritated it seems like but this is my baby
 

JENNYLEE202020

New member
i will try to make this as short as possible, my 3 year old son kaiden has been growing psudemonis
for awhile now, the cf center has messed up on his gag culture 3 times now and of course they deny it, the last 3 times they did his gag culture we noticed they didnt make him cough or anything, and the test results came back negative for psudemonis, each time we demanded they retest him becuase their was still no improvment, they did
it again &it came back positive for psudemonis, but they say he must have "re-grow'n it" this is to much of a Coincidence! so needless to say we are behind about a month each time they messed up, we have been fighting the psudemonis for 4 months now, we did tobi for a month then kaiden was admitted in the end of november for iv meds, then did another month of tobi, and now were doing it again. this time they want him to do a month of tobi then a month of Colistin then a month of tobi. which dosent make sense since we have tried the tobi already so many times at home now!
i want to get another opnion but dont know how we can afford it because his medicade wont pay for out of town doctors. so any advice in this area would be great because i am emotionally drained at this point i feel like im drowning, my next question is about the colistin, i read it is not fda approved to run through the nebulizer and a person with cf died from doing it. also is can cause respiratory distress along with a long list of others. have anyone used this on their child? how old were they? how often do they do it? have you seen any side affects? can this harm kaiden when he gets older? if we dont get rid of the psudemonis and he uses this colistin now will it work in the future if the infection gets bad or makes him sick? im so sorry for so many ?'s i just dont know what to do! thank you all so much i just really need help and when you question the doctors here they get irritated it seems like but this is my baby
 

JENNYLEE202020

New member
i will try to make this as short as possible, my 3 year old son kaiden has been growing psudemonis
for awhile now, the cf center has messed up on his gag culture 3 times now and of course they deny it, the last 3 times they did his gag culture we noticed they didnt make him cough or anything, and the test results came back negative for psudemonis, each time we demanded they retest him becuase their was still no improvment, they did
it again &it came back positive for psudemonis, but they say he must have "re-grow'n it" this is to much of a Coincidence! so needless to say we are behind about a month each time they messed up, we have been fighting the psudemonis for 4 months now, we did tobi for a month then kaiden was admitted in the end of november for iv meds, then did another month of tobi, and now were doing it again. this time they want him to do a month of tobi then a month of Colistin then a month of tobi. which dosent make sense since we have tried the tobi already so many times at home now!
i want to get another opnion but dont know how we can afford it because his medicade wont pay for out of town doctors. so any advice in this area would be great because i am emotionally drained at this point i feel like im drowning, my next question is about the colistin, i read it is not fda approved to run through the nebulizer and a person with cf died from doing it. also is can cause respiratory distress along with a long list of others. have anyone used this on their child? how old were they? how often do they do it? have you seen any side affects? can this harm kaiden when he gets older? if we dont get rid of the psudemonis and he uses this colistin now will it work in the future if the infection gets bad or makes him sick? im so sorry for so many ?'s i just dont know what to do! thank you all so much i just really need help and when you question the doctors here they get irritated it seems like but this is my baby
 

JENNYLEE202020

New member
i will try to make this as short as possible, my 3 year old son kaiden has been growing psudemonis
<br />for awhile now, the cf center has messed up on his gag culture 3 times now and of course they deny it, the last 3 times they did his gag culture we noticed they didnt make him cough or anything, and the test results came back negative for psudemonis, each time we demanded they retest him becuase their was still no improvment, they did
<br />it again &it came back positive for psudemonis, but they say he must have "re-grow'n it" this is to much of a Coincidence! so needless to say we are behind about a month each time they messed up, we have been fighting the psudemonis for 4 months now, we did tobi for a month then kaiden was admitted in the end of november for iv meds, then did another month of tobi, and now were doing it again. this time they want him to do a month of tobi then a month of Colistin then a month of tobi. which dosent make sense since we have tried the tobi already so many times at home now!
<br />i want to get another opnion but dont know how we can afford it because his medicade wont pay for out of town doctors. so any advice in this area would be great because i am emotionally drained at this point i feel like im drowning, my next question is about the colistin, i read it is not fda approved to run through the nebulizer and a person with cf died from doing it. also is can cause respiratory distress along with a long list of others. have anyone used this on their child? how old were they? how often do they do it? have you seen any side affects? can this harm kaiden when he gets older? if we dont get rid of the psudemonis and he uses this colistin now will it work in the future if the infection gets bad or makes him sick? im so sorry for so many ?'s i just dont know what to do! thank you all so much i just really need help and when you question the doctors here they get irritated it seems like but this is my baby
<br />
 
D

donny71

Guest
I don't know how much help we can be here. were not doctors, but we do have experience. I have been doing tobi/tobramycin my whole life. I used tobra until they formulated it into tobi for proper inhalation. I still do tobi after TX because it still thrives in the airways that they can't replace (your upper ones). SO I know that if he does culture psudemonis its something that they should probably treat all the time, quite of few CFers will grow it their entire lives.
 
D

donny71

Guest
I don't know how much help we can be here. were not doctors, but we do have experience. I have been doing tobi/tobramycin my whole life. I used tobra until they formulated it into tobi for proper inhalation. I still do tobi after TX because it still thrives in the airways that they can't replace (your upper ones). SO I know that if he does culture psudemonis its something that they should probably treat all the time, quite of few CFers will grow it their entire lives.
 
D

donny71

Guest
I don't know how much help we can be here. were not doctors, but we do have experience. I have been doing tobi/tobramycin my whole life. I used tobra until they formulated it into tobi for proper inhalation. I still do tobi after TX because it still thrives in the airways that they can't replace (your upper ones). SO I know that if he does culture psudemonis its something that they should probably treat all the time, quite of few CFers will grow it their entire lives.
 
D

donny71

Guest
I don't know how much help we can be here. were not doctors, but we do have experience. I have been doing tobi/tobramycin my whole life. I used tobra until they formulated it into tobi for proper inhalation. I still do tobi after TX because it still thrives in the airways that they can't replace (your upper ones). SO I know that if he does culture psudemonis its something that they should probably treat all the time, quite of few CFers will grow it their entire lives.
 
D

donny71

Guest
I don't know how much help we can be here. were not doctors, but we do have experience. I have been doing tobi/tobramycin my whole life. I used tobra until they formulated it into tobi for proper inhalation. I still do tobi after TX because it still thrives in the airways that they can't replace (your upper ones). SO I know that if he does culture psudemonis its something that they should probably treat all the time, quite of few CFers will grow it their entire lives.
 
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