Alternatives for treating Pseudo in my littlest one!

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brianbrandi

New member
My youngest w/ cf (we have 2 with cf) has recently tested postive for pseudo. 28 days of inhaed Tobi and she is still positive. Dr. has prescribed 3 CONTINUOUS months of inhaled Tobi to combat. What better options are out there? Inhaled Hydrogen Peroxide? Help please!
 
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brianbrandi

New member
My youngest w/ cf (we have 2 with cf) has recently tested postive for pseudo. 28 days of inhaed Tobi and she is still positive. Dr. has prescribed 3 CONTINUOUS months of inhaled Tobi to combat. What better options are out there? Inhaled Hydrogen Peroxide? Help please!
 
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Anomie

New member
They just added cipro to our daughter's tobi regimen. She takes it the same month as the tobi because its important to have periods of time when the pseudo isn't being treated with antibiotics. Its just a pill you take twice daily so you don't have to worry about increased neb time. I'll try to post back later and let you know how it works.
 
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Anomie

New member
They just added cipro to our daughter's tobi regimen. She takes it the same month as the tobi because its important to have periods of time when the pseudo isn't being treated with antibiotics. Its just a pill you take twice daily so you don't have to worry about increased neb time. I'll try to post back later and let you know how it works.
 
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Incomudrox

New member
Please do NOT use H2O2!!! You will cause damage. That being said if you were willing to do that look at Puracyn/microcyn technology. You may also get some Haritaki to try. You can read about Haritaki on my blog. Which is in my signature. To read about puracyn see my thread in the adults section about PFT goals. If you have any questions you can PM or email me. Frank.x.via@gmail.com.
 
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Incomudrox

New member
Please do NOT use H2O2!!! You will cause damage. That being said if you were willing to do that look at Puracyn/microcyn technology. You may also get some Haritaki to try. You can read about Haritaki on my blog. Which is in my signature. To read about puracyn see my thread in the adults section about PFT goals. If you have any questions you can PM or email me. Frank.x.via@gmail.com.
 
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Anomie

New member
I think its kind of strange that he would order 3 months of continuous tobi. Unless he's trying an early eradication method they usually like to cycle the tobi one month on one month off to prevent resistance. I personally don't think tobi is that effective at treating pseudo.
 
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Anomie

New member
I think its kind of strange that he would order 3 months of continuous tobi. Unless he's trying an early eradication method they usually like to cycle the tobi one month on one month off to prevent resistance. I personally don't think tobi is that effective at treating pseudo.
 
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Incomudrox

New member
I would rather do 3 months straight tobi and possibly kill it, than have it for the rest of my life. It took me 15 years give or take to kill mine and I'm not 100% sure its gone. I want 5 clean cultures to be sure. There are some people that are on Tobi non-stop. Some do tobi every other day. Some do two weeks on two weeks off. But generally you can do anything you want as long as you have an equal amount of time not on it aside from the case of non-stop tobi which is probably bad overall IMO.
 
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Incomudrox

New member
I would rather do 3 months straight tobi and possibly kill it, than have it for the rest of my life. It took me 15 years give or take to kill mine and I'm not 100% sure its gone. I want 5 clean cultures to be sure. There are some people that are on Tobi non-stop. Some do tobi every other day. Some do two weeks on two weeks off. But generally you can do anything you want as long as you have an equal amount of time not on it aside from the case of non-stop tobi which is probably bad overall IMO.
 
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ehtansky21

New member
I can't tell you for sure what worked for us. But after changing a few things, my oldest has not cultured pseudo for at least 3 years. He cultured it for over a year before then.
I added magnesium and we all went gluten free and that was the time that his cultures went clear. Check out my blog in my signature it explains a lot of the things we currently do.

blessing,
missa
 
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ehtansky21

New member
I can't tell you for sure what worked for us. But after changing a few things, my oldest has not cultured pseudo for at least 3 years. He cultured it for over a year before then.
I added magnesium and we all went gluten free and that was the time that his cultures went clear. Check out my blog in my signature it explains a lot of the things we currently do.

blessing,
missa
 
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imported_Momto2

New member
The best thing I have found is getting to a good BMI and lots of exercise. I kicked the PA at age 10 after getting 2 months of hyperalimentation (body weight went from 42 lbs to over 60) and several times every day, plus CPT and nebbulizers. That is when I did some HTS too for the first time. (no, it hadnt ben officially invented then, but my CF doc had a hunch and we trusted her) Best of luck.
 
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imported_Momto2

New member
The best thing I have found is getting to a good BMI and lots of exercise. I kicked the PA at age 10 after getting 2 months of hyperalimentation (body weight went from 42 lbs to over 60) and several times every day, plus CPT and nebbulizers. That is when I did some HTS too for the first time. (no, it hadnt ben officially invented then, but my CF doc had a hunch and we trusted her) Best of luck.
 
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biz

New member
my 6 year old son is on Tobi month on and month off probably for the rest of his life. freakin 6 years old. ugh i hate that. we were on cayston but they kicked us out cause of the shortage so were using tobi again. it is a lot of time and aidan really doesnt like it. but we have to keep that pseudo at bay. his cultures have been negative then the last one there it was again. i hope the continueous tobi works for you and your little one doesnt have to do what most of other cfers have to do till their told they dont need it anymore. and honestly the way ive been looking at it since we had to switch to tobi (which takes 20 min...and the cayston took 2-3min) aidan's treatment are going to get longer and longer as he progresses. getting it instilled now with compliance is a good thing in my opinion.
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Elizabeth
mommy to Aidan 6 w/cf
 
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biz

New member
my 6 year old son is on Tobi month on and month off probably for the rest of his life. freakin 6 years old. ugh i hate that. we were on cayston but they kicked us out cause of the shortage so were using tobi again. it is a lot of time and aidan really doesnt like it. but we have to keep that pseudo at bay. his cultures have been negative then the last one there it was again. i hope the continueous tobi works for you and your little one doesnt have to do what most of other cfers have to do till their told they dont need it anymore. and honestly the way ive been looking at it since we had to switch to tobi (which takes 20 min...and the cayston took 2-3min) aidan's treatment are going to get longer and longer as he progresses. getting it instilled now with compliance is a good thing in my opinion.
------------------------------------------------------------------------------------------------------------------------------

Elizabeth
mommy to Aidan 6 w/cf
 
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rmotion

New member
Yeah definately dont inhale H202!
Where did you get that, I think you might be thinking IV H202.
I have taken H202 IV many times, and some people find help - lots of research for other lung problems -but my own experience is mixed.

chasingtruth
Anyone that wants gluten free food at a discount email me for a coupon code for 20% off at
a gluten free online retailer - It is only for CF's that are gluten free.
 
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rmotion

New member
Yeah definately dont inhale H202!
Where did you get that, I think you might be thinking IV H202.
I have taken H202 IV many times, and some people find help - lots of research for other lung problems -but my own experience is mixed.

chasingtruth
Anyone that wants gluten free food at a discount email me for a coupon code for 20% off at
a gluten free online retailer - It is only for CF's that are gluten free.
 
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