please help need advice

[JENNYLEE202020]

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]

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]

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]

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]

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

 

[crickit715]

i can only comment on a couple things....my daughter is 2 and they never make her "cough" when they do a throat culture, they just swab the back of her throat. she also tested positive at 1 for lite pseudomonas. we did a round of tobi and it went away, but that is not always the case. if it keeps coming back you may want to check for environmental causes of it, pseudomonas breeds in standing water..the bathroom is the worst place! dont use bath mats or if you have to bleach them often, wash your shower head after each shower, because the pseudomonas can grow in there and when the steam comes out it gets breathed. i dont have any knowledge of colistin. but you may want to post this in the families section also because it concerns a child....other parents may have used the med. good luck

 

[crickit715]

i can only comment on a couple things....my daughter is 2 and they never make her "cough" when they do a throat culture, they just swab the back of her throat. she also tested positive at 1 for lite pseudomonas. we did a round of tobi and it went away, but that is not always the case. if it keeps coming back you may want to check for environmental causes of it, pseudomonas breeds in standing water..the bathroom is the worst place! dont use bath mats or if you have to bleach them often, wash your shower head after each shower, because the pseudomonas can grow in there and when the steam comes out it gets breathed. i dont have any knowledge of colistin. but you may want to post this in the families section also because it concerns a child....other parents may have used the med. good luck

 

[crickit715]

i can only comment on a couple things....my daughter is 2 and they never make her "cough" when they do a throat culture, they just swab the back of her throat. she also tested positive at 1 for lite pseudomonas. we did a round of tobi and it went away, but that is not always the case. if it keeps coming back you may want to check for environmental causes of it, pseudomonas breeds in standing water..the bathroom is the worst place! dont use bath mats or if you have to bleach them often, wash your shower head after each shower, because the pseudomonas can grow in there and when the steam comes out it gets breathed. i dont have any knowledge of colistin. but you may want to post this in the families section also because it concerns a child....other parents may have used the med. good luck

 

[crickit715]

i can only comment on a couple things....my daughter is 2 and they never make her "cough" when they do a throat culture, they just swab the back of her throat. she also tested positive at 1 for lite pseudomonas. we did a round of tobi and it went away, but that is not always the case. if it keeps coming back you may want to check for environmental causes of it, pseudomonas breeds in standing water..the bathroom is the worst place! dont use bath mats or if you have to bleach them often, wash your shower head after each shower, because the pseudomonas can grow in there and when the steam comes out it gets breathed. i dont have any knowledge of colistin. but you may want to post this in the families section also because it concerns a child....other parents may have used the med. good luck

 

[crickit715]

i can only comment on a couple things....my daughter is 2 and they never make her "cough" when they do a throat culture, they just swab the back of her throat. she also tested positive at 1 for lite pseudomonas. we did a round of tobi and it went away, but that is not always the case. if it keeps coming back you may want to check for environmental causes of it, pseudomonas breeds in standing water..the bathroom is the worst place! dont use bath mats or if you have to bleach them often, wash your shower head after each shower, because the pseudomonas can grow in there and when the steam comes out it gets breathed. i dont have any knowledge of colistin. but you may want to post this in the families section also because it concerns a child....other parents may have used the med. good luck

 

[liz26ny]

You are correct that Colisitn is not FDA approved for inhalation, although it is pretty widely used that way in the CF community. There was a death a couple of years back where a patient went into respiratory failure after using colistin....but this was because the patient was using a premixed solution of drug, already reconstituted by the pharmacy. Colistin comes in a powder form and needs to be mixed with sterile water immediately prior to use. Once mixed if not used within 24 hours there is a chance it will become toxic. This was the case with the patient who died. I use colistin on a fairly regular basis and haven't had any adverse affects from it, but I am much older than your son. You may want to try reposting in the families section as ricki suggested. Hope Kaiden is feeling better soon!

 

[liz26ny]

You are correct that Colisitn is not FDA approved for inhalation, although it is pretty widely used that way in the CF community. There was a death a couple of years back where a patient went into respiratory failure after using colistin....but this was because the patient was using a premixed solution of drug, already reconstituted by the pharmacy. Colistin comes in a powder form and needs to be mixed with sterile water immediately prior to use. Once mixed if not used within 24 hours there is a chance it will become toxic. This was the case with the patient who died. I use colistin on a fairly regular basis and haven't had any adverse affects from it, but I am much older than your son. You may want to try reposting in the families section as ricki suggested. Hope Kaiden is feeling better soon!

 

[liz26ny]

You are correct that Colisitn is not FDA approved for inhalation, although it is pretty widely used that way in the CF community. There was a death a couple of years back where a patient went into respiratory failure after using colistin....but this was because the patient was using a premixed solution of drug, already reconstituted by the pharmacy. Colistin comes in a powder form and needs to be mixed with sterile water immediately prior to use. Once mixed if not used within 24 hours there is a chance it will become toxic. This was the case with the patient who died. I use colistin on a fairly regular basis and haven't had any adverse affects from it, but I am much older than your son. You may want to try reposting in the families section as ricki suggested. Hope Kaiden is feeling better soon!

 

[liz26ny]

You are correct that Colisitn is not FDA approved for inhalation, although it is pretty widely used that way in the CF community. There was a death a couple of years back where a patient went into respiratory failure after using colistin....but this was because the patient was using a premixed solution of drug, already reconstituted by the pharmacy. Colistin comes in a powder form and needs to be mixed with sterile water immediately prior to use. Once mixed if not used within 24 hours there is a chance it will become toxic. This was the case with the patient who died. I use colistin on a fairly regular basis and haven't had any adverse affects from it, but I am much older than your son. You may want to try reposting in the families section as ricki suggested. Hope Kaiden is feeling better soon!

 

[liz26ny]

You are correct that Colisitn is not FDA approved for inhalation, although it is pretty widely used that way in the CF community. There was a death a couple of years back where a patient went into respiratory failure after using colistin....but this was because the patient was using a premixed solution of drug, already reconstituted by the pharmacy. Colistin comes in a powder form and needs to be mixed with sterile water immediately prior to use. Once mixed if not used within 24 hours there is a chance it will become toxic. This was the case with the patient who died. I use colistin on a fairly regular basis and haven't had any adverse affects from it, but I am much older than your son. You may want to try reposting in the families section as ricki suggested. Hope Kaiden is feeling better soon!