My son is 5 and was diagnosed at 4 mon. He just had his first sinus surgery and we are having difficulty staying healthy. I am concerned about the effects of longterm use of TOBI Cipro and Bactrum. Does anyone have any thoughts? Is there anyone who is having success with alternative/natural/integrative medicine? He does treatments twice a day with vest, Pulmazyme (am) and 3% Saline (pm). We also supplement with Reliv products along with high fruits and veg diet. Thank you for your help...
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Concerned about negative effects of meds
- Thread starter ajc41977
- Start date
My son is 5 and was diagnosed at 4 mon. He just had his first sinus surgery and we are having difficulty staying healthy. I am concerned about the effects of longterm use of TOBI Cipro and Bactrum. Does anyone have any thoughts? Is there anyone who is having success with alternative/natural/integrative medicine? He does treatments twice a day with vest, Pulmazyme (am) and 3% Saline (pm). We also supplement with Reliv products along with high fruits and veg diet. Thank you for your help...
My son is 5 and was diagnosed at 4 mon. He just had his first sinus surgery and we are having difficulty staying healthy. I am concerned about the effects of longterm use of TOBI Cipro and Bactrum. Does anyone have any thoughts? Is there anyone who is having success with alternative/natural/integrative medicine? He does treatments twice a day with vest, Pulmazyme (am) and 3% Saline (pm). We also supplement with Reliv products along with high fruits and veg diet. Thank you for your help...
The most concerning effect of frequent or long term antibiotic treatment is resistance. Unfortunately with CF we are still in a prevention mode of treatment. We treat infections aggressively with antibiotics to minimize lung damage. It's a double edged sword. If you don't treat with antibiotics you risk more lung damage, if you treat aggressively you risk bacterial resistance.
There have been some studies with natural remedies (mostly to to with inflammation), the results were mediocre. I have heard some good anecdotal information for probiotics, but I can't say that I've read much research on it.
Hopefully the sinus surgery will help. Personally, most of my lung exacerbations started out as a sinusitis.
There have been some studies with natural remedies (mostly to to with inflammation), the results were mediocre. I have heard some good anecdotal information for probiotics, but I can't say that I've read much research on it.
Hopefully the sinus surgery will help. Personally, most of my lung exacerbations started out as a sinusitis.
The most concerning effect of frequent or long term antibiotic treatment is resistance. Unfortunately with CF we are still in a prevention mode of treatment. We treat infections aggressively with antibiotics to minimize lung damage. It's a double edged sword. If you don't treat with antibiotics you risk more lung damage, if you treat aggressively you risk bacterial resistance.
There have been some studies with natural remedies (mostly to to with inflammation), the results were mediocre. I have heard some good anecdotal information for probiotics, but I can't say that I've read much research on it.
Hopefully the sinus surgery will help. Personally, most of my lung exacerbations started out as a sinusitis.
There have been some studies with natural remedies (mostly to to with inflammation), the results were mediocre. I have heard some good anecdotal information for probiotics, but I can't say that I've read much research on it.
Hopefully the sinus surgery will help. Personally, most of my lung exacerbations started out as a sinusitis.
The most concerning effect of frequent or long term antibiotic treatment is resistance. Unfortunately with CF we are still in a prevention mode of treatment. We treat infections aggressively with antibiotics to minimize lung damage. It's a double edged sword. If you don't treat with antibiotics you risk more lung damage, if you treat aggressively you risk bacterial resistance.
<br />
<br />There have been some studies with natural remedies (mostly to to with inflammation), the results were mediocre. I have heard some good anecdotal information for probiotics, but I can't say that I've read much research on it.
<br />
<br />Hopefully the sinus surgery will help. Personally, most of my lung exacerbations started out as a sinusitis.
<br />
<br />There have been some studies with natural remedies (mostly to to with inflammation), the results were mediocre. I have heard some good anecdotal information for probiotics, but I can't say that I've read much research on it.
<br />
<br />Hopefully the sinus surgery will help. Personally, most of my lung exacerbations started out as a sinusitis.
You need to be careful with some abx. TOBI, while it's usually very well tolerated, has side effects that are irreversible. These include hearing loss and dizziness. Aerosolized TOBI has less chances of causing these problems, but it can happen. I was on aerosolized TOBI and IV TOBI for about a month once before when I started noticing that I felt like I was in a tunnel all the time. It messed with my hearing so we stopped it right away. This feeling did subside, however I believe whatever the TOBI did to my hearing was minimal enough for me to get used to and no longer notice. I don't think it resolved itself after stopping the TOBI. I don't mean to scare you, but I've met CFers who ended up needing cochlear implants after long term use of TOBI. I don't know if that is more due to IV or aerosolized or what the deal with it was. Since your son is young, though, I think you should know about the hearing loss/dizziness because it might be something your little one doesn't notice right away or wouldn't think to mention to you. With long term use of TOBI, I would suggest seeing your pediatrician and getting a baseline hearing test and then follow ups, just to make sure things aren't changing with out realizing it. I have to do this now every time I go on other meds that have the same possible side effects as TOBI.
I've been on Cipro and Bactrum for VERY LONG periods of time as well and they never really caused me problems. If anything, long term use got me more used to the side effects of those drugs, the most prominent one being nausea.
As far as alternative/natural meds, my mom once took me to an herbalist. At the time, our main concern was my digestive issues. This herbalist concocted a powder which I know contained garlic and dried pineapple. It contained several other herbs that I had never heard of. I took one spoonful of it mixed in juice anytime I had CF belly ache and it took the pain away. It tasted horrible and my CF doc never believed my mom and I when we told him it helped with the actual aches but I swore by it for years. I've also found benefits in taking cinnamon to help control blood sugar. I'm sorry I don't have anything really definite to recommend to you regarding natural medicines, but I believe that natural remedies are worth a shot. I've had some good experiences and I know others on this site have as well.
Good luck to you both!
I've been on Cipro and Bactrum for VERY LONG periods of time as well and they never really caused me problems. If anything, long term use got me more used to the side effects of those drugs, the most prominent one being nausea.
As far as alternative/natural meds, my mom once took me to an herbalist. At the time, our main concern was my digestive issues. This herbalist concocted a powder which I know contained garlic and dried pineapple. It contained several other herbs that I had never heard of. I took one spoonful of it mixed in juice anytime I had CF belly ache and it took the pain away. It tasted horrible and my CF doc never believed my mom and I when we told him it helped with the actual aches but I swore by it for years. I've also found benefits in taking cinnamon to help control blood sugar. I'm sorry I don't have anything really definite to recommend to you regarding natural medicines, but I believe that natural remedies are worth a shot. I've had some good experiences and I know others on this site have as well.
Good luck to you both!
You need to be careful with some abx. TOBI, while it's usually very well tolerated, has side effects that are irreversible. These include hearing loss and dizziness. Aerosolized TOBI has less chances of causing these problems, but it can happen. I was on aerosolized TOBI and IV TOBI for about a month once before when I started noticing that I felt like I was in a tunnel all the time. It messed with my hearing so we stopped it right away. This feeling did subside, however I believe whatever the TOBI did to my hearing was minimal enough for me to get used to and no longer notice. I don't think it resolved itself after stopping the TOBI. I don't mean to scare you, but I've met CFers who ended up needing cochlear implants after long term use of TOBI. I don't know if that is more due to IV or aerosolized or what the deal with it was. Since your son is young, though, I think you should know about the hearing loss/dizziness because it might be something your little one doesn't notice right away or wouldn't think to mention to you. With long term use of TOBI, I would suggest seeing your pediatrician and getting a baseline hearing test and then follow ups, just to make sure things aren't changing with out realizing it. I have to do this now every time I go on other meds that have the same possible side effects as TOBI.
I've been on Cipro and Bactrum for VERY LONG periods of time as well and they never really caused me problems. If anything, long term use got me more used to the side effects of those drugs, the most prominent one being nausea.
As far as alternative/natural meds, my mom once took me to an herbalist. At the time, our main concern was my digestive issues. This herbalist concocted a powder which I know contained garlic and dried pineapple. It contained several other herbs that I had never heard of. I took one spoonful of it mixed in juice anytime I had CF belly ache and it took the pain away. It tasted horrible and my CF doc never believed my mom and I when we told him it helped with the actual aches but I swore by it for years. I've also found benefits in taking cinnamon to help control blood sugar. I'm sorry I don't have anything really definite to recommend to you regarding natural medicines, but I believe that natural remedies are worth a shot. I've had some good experiences and I know others on this site have as well.
Good luck to you both!
I've been on Cipro and Bactrum for VERY LONG periods of time as well and they never really caused me problems. If anything, long term use got me more used to the side effects of those drugs, the most prominent one being nausea.
As far as alternative/natural meds, my mom once took me to an herbalist. At the time, our main concern was my digestive issues. This herbalist concocted a powder which I know contained garlic and dried pineapple. It contained several other herbs that I had never heard of. I took one spoonful of it mixed in juice anytime I had CF belly ache and it took the pain away. It tasted horrible and my CF doc never believed my mom and I when we told him it helped with the actual aches but I swore by it for years. I've also found benefits in taking cinnamon to help control blood sugar. I'm sorry I don't have anything really definite to recommend to you regarding natural medicines, but I believe that natural remedies are worth a shot. I've had some good experiences and I know others on this site have as well.
Good luck to you both!
You need to be careful with some abx. TOBI, while it's usually very well tolerated, has side effects that are irreversible. These include hearing loss and dizziness. Aerosolized TOBI has less chances of causing these problems, but it can happen. I was on aerosolized TOBI and IV TOBI for about a month once before when I started noticing that I felt like I was in a tunnel all the time. It messed with my hearing so we stopped it right away. This feeling did subside, however I believe whatever the TOBI did to my hearing was minimal enough for me to get used to and no longer notice. I don't think it resolved itself after stopping the TOBI. I don't mean to scare you, but I've met CFers who ended up needing cochlear implants after long term use of TOBI. I don't know if that is more due to IV or aerosolized or what the deal with it was. Since your son is young, though, I think you should know about the hearing loss/dizziness because it might be something your little one doesn't notice right away or wouldn't think to mention to you. With long term use of TOBI, I would suggest seeing your pediatrician and getting a baseline hearing test and then follow ups, just to make sure things aren't changing with out realizing it. I have to do this now every time I go on other meds that have the same possible side effects as TOBI.
<br />
<br />I've been on Cipro and Bactrum for VERY LONG periods of time as well and they never really caused me problems. If anything, long term use got me more used to the side effects of those drugs, the most prominent one being nausea.
<br />
<br />As far as alternative/natural meds, my mom once took me to an herbalist. At the time, our main concern was my digestive issues. This herbalist concocted a powder which I know contained garlic and dried pineapple. It contained several other herbs that I had never heard of. I took one spoonful of it mixed in juice anytime I had CF belly ache and it took the pain away. It tasted horrible and my CF doc never believed my mom and I when we told him it helped with the actual aches but I swore by it for years. I've also found benefits in taking cinnamon to help control blood sugar. I'm sorry I don't have anything really definite to recommend to you regarding natural medicines, but I believe that natural remedies are worth a shot. I've had some good experiences and I know others on this site have as well.
<br />
<br />Good luck to you both!
<br />
<br />I've been on Cipro and Bactrum for VERY LONG periods of time as well and they never really caused me problems. If anything, long term use got me more used to the side effects of those drugs, the most prominent one being nausea.
<br />
<br />As far as alternative/natural meds, my mom once took me to an herbalist. At the time, our main concern was my digestive issues. This herbalist concocted a powder which I know contained garlic and dried pineapple. It contained several other herbs that I had never heard of. I took one spoonful of it mixed in juice anytime I had CF belly ache and it took the pain away. It tasted horrible and my CF doc never believed my mom and I when we told him it helped with the actual aches but I swore by it for years. I've also found benefits in taking cinnamon to help control blood sugar. I'm sorry I don't have anything really definite to recommend to you regarding natural medicines, but I believe that natural remedies are worth a shot. I've had some good experiences and I know others on this site have as well.
<br />
<br />Good luck to you both!
As far as tobi goes the hearing loss is a side effect of long term repeated use of iv tobramycin. I have been using it for probably 12+ years and while I do have minor hearing loss it's not enough that I notice. Generally if you have 2 or more courses of iv tobramycin in a 12 month period that's when they'll start checking hearing. Bactrim and cipro I've never had any problems with except some stomach problems in which case taking probiotics while on them cleared up those problems.
As far as tobi goes the hearing loss is a side effect of long term repeated use of iv tobramycin. I have been using it for probably 12+ years and while I do have minor hearing loss it's not enough that I notice. Generally if you have 2 or more courses of iv tobramycin in a 12 month period that's when they'll start checking hearing. Bactrim and cipro I've never had any problems with except some stomach problems in which case taking probiotics while on them cleared up those problems.
As far as tobi goes the hearing loss is a side effect of long term repeated use of iv tobramycin. I have been using it for probably 12+ years and while I do have minor hearing loss it's not enough that I notice. Generally if you have 2 or more courses of iv tobramycin in a 12 month period that's when they'll start checking hearing. Bactrim and cipro I've never had any problems with except some stomach problems in which case taking probiotics while on them cleared up those problems.
GennaLouiseCarolineChopra
New member
Hi i was diagnosed at six weeks of age im on tobi dnas inhalors meds all ov it rly the best thing is for him to have a balanced diet and obviosly when hes old enough take him to a baby gym to keep him active
GennaLouiseCarolineChopra
New member
Hi i was diagnosed at six weeks of age im on tobi dnas inhalors meds all ov it rly the best thing is for him to have a balanced diet and obviosly when hes old enough take him to a baby gym to keep him active