Hi

Larasmom

New member
Thanks to all for your posts. Lara gets sputum cultures every 3 months (is that the norm?) or will it have to be done more often now? We are going back tomorrow for another culture. ymikhale: I'm glad to hear your DD keeps getting rid of it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Jenny: It's a good thing we don't have fish! I wonder why it kills them? Lara has been complaining of stomach pains after she does the Tobi, has anyone else had this complaint? Plus she is exhausted, she is sleeping 12 hours a night and still giving me a hard time when I have to wake her up for school.....I dont know if it's from being sick or the Tobi......ugh.
 

Larasmom

New member
Thanks to all for your posts. Lara gets sputum cultures every 3 months (is that the norm?) or will it have to be done more often now? We are going back tomorrow for another culture. ymikhale: I'm glad to hear your DD keeps getting rid of it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Jenny: It's a good thing we don't have fish! I wonder why it kills them? Lara has been complaining of stomach pains after she does the Tobi, has anyone else had this complaint? Plus she is exhausted, she is sleeping 12 hours a night and still giving me a hard time when I have to wake her up for school.....I dont know if it's from being sick or the Tobi......ugh.
 

Larasmom

New member
Thanks to all for your posts. Lara gets sputum cultures every 3 months (is that the norm?) or will it have to be done more often now? We are going back tomorrow for another culture. ymikhale: I'm glad to hear your DD keeps getting rid of it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Jenny: It's a good thing we don't have fish! I wonder why it kills them? Lara has been complaining of stomach pains after she does the Tobi, has anyone else had this complaint? Plus she is exhausted, she is sleeping 12 hours a night and still giving me a hard time when I have to wake her up for school.....I dont know if it's from being sick or the Tobi......ugh.
 

Ratatosk

Administrator
Staff member
DS' only issue with Tobi is that it seems to irritate his nasal passages, so his nose gets really stuffy and he tends to blow his nose a lot more. We figure that the tobi is also helping to clear out any crud he's got in his sinus passages.
 

Ratatosk

Administrator
Staff member
DS' only issue with Tobi is that it seems to irritate his nasal passages, so his nose gets really stuffy and he tends to blow his nose a lot more. We figure that the tobi is also helping to clear out any crud he's got in his sinus passages.
 

Ratatosk

Administrator
Staff member
DS' only issue with Tobi is that it seems to irritate his nasal passages, so his nose gets really stuffy and he tends to blow his nose a lot more. We figure that the tobi is also helping to clear out any crud he's got in his sinus passages.
 

ymikhale

New member
3 months is a norm, european CF consensus actually states it is a minimum, so the clinics are very reluctant to do it more often (in the US I think it is also an insurance issue). When my dd first cultured PA, the clinic told us to do it every month for as long as we were doing TOBI. I actually liked the idea of doing it more often to catch PA early and had to struggle with nurses to get it done more often, but i did not back off. In my view, it is important to prevent PA from colonizing, and doing cultures more is helpful. This said, for many people it is not practical if the clinic is far away etc.
 

ymikhale

New member
3 months is a norm, european CF consensus actually states it is a minimum, so the clinics are very reluctant to do it more often (in the US I think it is also an insurance issue). When my dd first cultured PA, the clinic told us to do it every month for as long as we were doing TOBI. I actually liked the idea of doing it more often to catch PA early and had to struggle with nurses to get it done more often, but i did not back off. In my view, it is important to prevent PA from colonizing, and doing cultures more is helpful. This said, for many people it is not practical if the clinic is far away etc.
 

ymikhale

New member
3 months is a norm, european CF consensus actually states it is a minimum, so the clinics are very reluctant to do it more often (in the US I think it is also an insurance issue). When my dd first cultured PA, the clinic told us to do it every month for as long as we were doing TOBI. I actually liked the idea of doing it more often to catch PA early and had to struggle with nurses to get it done more often, but i did not back off. In my view, it is important to prevent PA from colonizing, and doing cultures more is helpful. This said, for many people it is not practical if the clinic is far away etc.
 

Larasmom

New member
Yes it is irritating her nasal passages also! Lots o bloody noses, which is the norm for her anyway, but they seem to last longer now, and there "more bloody"
 

Larasmom

New member
Yes it is irritating her nasal passages also! Lots o bloody noses, which is the norm for her anyway, but they seem to last longer now, and there "more bloody"
 

Larasmom

New member
Yes it is irritating her nasal passages also! Lots o bloody noses, which is the norm for her anyway, but they seem to last longer now, and there "more bloody"
 
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