Throat cultures

L

ldenkers

Guest
We asked about antibiotics and they said no. They did seem surprised we haven't been told to go to a gastro doctor, but also didn't suggest anything. It is our first appointment at John Hopkins and they said these boys have grown E. coli and another bug since birth in 4 different throat cultures. We were never told at the other CF clinics... Not sure where to take this. I think I'm going to call John Hopkins Monday and clarify if we should do anything.

Does anyone have any experience with none CF bugs growing? So far these boys have no CF symptoms at all. negative sweat test. I'm hoping this is not CF related as well, not sure if we will ever know.
 
L

ldenkers

Guest
We asked about antibiotics and they said no. They did seem surprised we haven't been told to go to a gastro doctor, but also didn't suggest anything. It is our first appointment at John Hopkins and they said these boys have grown E. coli and another bug since birth in 4 different throat cultures. We were never told at the other CF clinics... Not sure where to take this. I think I'm going to call John Hopkins Monday and clarify if we should do anything.

Does anyone have any experience with none CF bugs growing? So far these boys have no CF symptoms at all. negative sweat test. I'm hoping this is not CF related as well, not sure if we will ever know.
 
L

ldenkers

Guest
We asked about antibiotics and they said no. They did seem surprised we haven't been told to go to a gastro doctor, but also didn't suggest anything. It is our first appointment at John Hopkins and they said these boys have grown E. coli and another bug since birth in 4 different throat cultures. We were never told at the other CF clinics... Not sure where to take this. I think I'm going to call John Hopkins Monday and clarify if we should do anything.
<br />
<br />Does anyone have any experience with none CF bugs growing? So far these boys have no CF symptoms at all. negative sweat test. I'm hoping this is not CF related as well, not sure if we will ever know.
 
3

3LilFightersmom

New member
all 3 of my boys had silent reflux ( meaning that they all have moderate reflux and didn't have many symptoms that you would associate with reflux)

With 2 out of the 3 bronchoscopy's caused us to question if relux was an issue. * fat lipids were found in the lungs, as well as some bugs specific to reflux.

The youngest has had a ph probe study done, and it confirmed moderate reflux. Once we started treating him for reflux, his lung infections decreased. Huge help.

My other sons, the older ones recently had endoscopy's done. Once inside, docters saw signs of reflux, and both sons had hernias, and one had multiple ulcers...all caused from reflux.

My conclusion is that if that is all they have ever known, maybe they grew accustomed to the discomfort and didn't cry about it.So my kids had untreated reflux for years and we had no clue.

Even if your kids don't have any symptoms yet, cf is progressive. Your kids have cf and expect for things to happen eventually through the years. reflux is very common in people with cf. You definitely want to ask for a ph study to be done to confirm the reflux. Based on the cultures pointing to that direction, you need to know the severity of the reflux if it is there, so they can begin reflux meds if necessary.

Obviously my older boys were a later diagnosis, so we didn't question it... but now I feel bad adding yet another med to treat the ulcers, and possible hernia repair surgery... all because of untreated reflux.

Just food for thought.

ps. my kids have the same mutations as yours.
 
3

3LilFightersmom

New member
all 3 of my boys had silent reflux ( meaning that they all have moderate reflux and didn't have many symptoms that you would associate with reflux)

With 2 out of the 3 bronchoscopy's caused us to question if relux was an issue. * fat lipids were found in the lungs, as well as some bugs specific to reflux.

The youngest has had a ph probe study done, and it confirmed moderate reflux. Once we started treating him for reflux, his lung infections decreased. Huge help.

My other sons, the older ones recently had endoscopy's done. Once inside, docters saw signs of reflux, and both sons had hernias, and one had multiple ulcers...all caused from reflux.

My conclusion is that if that is all they have ever known, maybe they grew accustomed to the discomfort and didn't cry about it.So my kids had untreated reflux for years and we had no clue.

Even if your kids don't have any symptoms yet, cf is progressive. Your kids have cf and expect for things to happen eventually through the years. reflux is very common in people with cf. You definitely want to ask for a ph study to be done to confirm the reflux. Based on the cultures pointing to that direction, you need to know the severity of the reflux if it is there, so they can begin reflux meds if necessary.

Obviously my older boys were a later diagnosis, so we didn't question it... but now I feel bad adding yet another med to treat the ulcers, and possible hernia repair surgery... all because of untreated reflux.

Just food for thought.

ps. my kids have the same mutations as yours.
 
3

3LilFightersmom

New member
all 3 of my boys had silent reflux ( meaning that they all have moderate reflux and didn't have many symptoms that you would associate with reflux)
<br />
<br />With 2 out of the 3 bronchoscopy's caused us to question if relux was an issue. * fat lipids were found in the lungs, as well as some bugs specific to reflux.
<br />
<br />The youngest has had a ph probe study done, and it confirmed moderate reflux. Once we started treating him for reflux, his lung infections decreased. Huge help.
<br />
<br />My other sons, the older ones recently had endoscopy's done. Once inside, docters saw signs of reflux, and both sons had hernias, and one had multiple ulcers...all caused from reflux.
<br />
<br />My conclusion is that if that is all they have ever known, maybe they grew accustomed to the discomfort and didn't cry about it.So my kids had untreated reflux for years and we had no clue.
<br />
<br />Even if your kids don't have any symptoms yet, cf is progressive. Your kids have cf and expect for things to happen eventually through the years. reflux is very common in people with cf. You definitely want to ask for a ph study to be done to confirm the reflux. Based on the cultures pointing to that direction, you need to know the severity of the reflux if it is there, so they can begin reflux meds if necessary.
<br />
<br />Obviously my older boys were a later diagnosis, so we didn't question it... but now I feel bad adding yet another med to treat the ulcers, and possible hernia repair surgery... all because of untreated reflux.
<br />
<br />Just food for thought.
<br />
<br />ps. my kids have the same mutations as yours.
 
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