More nebs or straight to IVs for a 3 yr old?

[MDad]

Anyone with any experience of pseudomonas in younger children (silly question on a CF page I suppose)?

Our 3yr old appears to have a stronger growth now than before he started on Tobi and Ciproxin for pseudo. Doctors suggestions are try Colomycin or move straight to 2 weeks of IVs. We'd obviously like to knock this on its head but am wondering if hospital is needed.

His cough is stronger now than before he started any treatment.In fact he rarely coughed before that.

Any thoughts on best way forward?

thanks,
Matthew's Dad.

 

[MDad]

Anyone with any experience of pseudomonas in younger children (silly question on a CF page I suppose)?

Our 3yr old appears to have a stronger growth now than before he started on Tobi and Ciproxin for pseudo. Doctors suggestions are try Colomycin or move straight to 2 weeks of IVs. We'd obviously like to knock this on its head but am wondering if hospital is needed.

His cough is stronger now than before he started any treatment.In fact he rarely coughed before that.

Any thoughts on best way forward?

thanks,
Matthew's Dad.

 

[MDad]

Anyone with any experience of pseudomonas in younger children (silly question on a CF page I suppose)?
<br />
<br />Our 3yr old appears to have a stronger growth now than before he started on Tobi and Ciproxin for pseudo. Doctors suggestions are try Colomycin or move straight to 2 weeks of IVs. We'd obviously like to knock this on its head but am wondering if hospital is needed.
<br />
<br />His cough is stronger now than before he started any treatment.In fact he rarely coughed before that.
<br />
<br />Any thoughts on best way forward?
<br />
<br />thanks,
<br />Matthew's Dad.

 

[edan]

Hi. We don't have experience with Pseudomonas, but my 3 year old was on iv antibiotics in August. If it is IVs you are worried about, I can tell you that it totally freaked me out at first, but she did really well with it. The worst part was the 1st hour after she woke up from anesthesia (sp?). She was a bit out of it and wanted that picc line out of her arm. But within an hour or two she was totally used to it. We took her home on day 5 of ivs and finished up at home. At home, they were dispensed with a little bottle the size of a soda can that she carried around with her. Took 30 minutes per dispense. I forgot the name of it, but I am sure someone will chime in with the answer!

Really, the IVs were no big deal.

Also, she loved the hospital. We positioned it as the "Dr. Hotel". She loved that we were there hanging out with her the whole time. She loved all of the nurses coming in to check her 02/temp/etc. Between treatments, we took her outside ALOT. Maybe we won't be so lucky next time, but for now she has really good feelings about the hospital.

Edan.

 

[edan]

Hi. We don't have experience with Pseudomonas, but my 3 year old was on iv antibiotics in August. If it is IVs you are worried about, I can tell you that it totally freaked me out at first, but she did really well with it. The worst part was the 1st hour after she woke up from anesthesia (sp?). She was a bit out of it and wanted that picc line out of her arm. But within an hour or two she was totally used to it. We took her home on day 5 of ivs and finished up at home. At home, they were dispensed with a little bottle the size of a soda can that she carried around with her. Took 30 minutes per dispense. I forgot the name of it, but I am sure someone will chime in with the answer!

Really, the IVs were no big deal.

Also, she loved the hospital. We positioned it as the "Dr. Hotel". She loved that we were there hanging out with her the whole time. She loved all of the nurses coming in to check her 02/temp/etc. Between treatments, we took her outside ALOT. Maybe we won't be so lucky next time, but for now she has really good feelings about the hospital.

Edan.

 

[edan]

Hi. We don't have experience with Pseudomonas, but my 3 year old was on iv antibiotics in August. If it is IVs you are worried about, I can tell you that it totally freaked me out at first, but she did really well with it. The worst part was the 1st hour after she woke up from anesthesia (sp?). She was a bit out of it and wanted that picc line out of her arm. But within an hour or two she was totally used to it. We took her home on day 5 of ivs and finished up at home. At home, they were dispensed with a little bottle the size of a soda can that she carried around with her. Took 30 minutes per dispense. I forgot the name of it, but I am sure someone will chime in with the answer!
<br />
<br />Really, the IVs were no big deal.
<br />
<br />Also, she loved the hospital. We positioned it as the "Dr. Hotel". She loved that we were there hanging out with her the whole time. She loved all of the nurses coming in to check her 02/temp/etc. Between treatments, we took her outside ALOT. Maybe we won't be so lucky next time, but for now she has really good feelings about the hospital.
<br />
<br />Edan.

 

[mag6125]

Edan sounds like you are talking about Intermates. That's what I get for home ivs too and it makes doing home ivs a piece of cake. As far as another oral med vs. ivs when I was that age they probably would have tried the oral but the docs seem to be much more aggressive in treatment now than they were back then. Make sure your doc knows his cough is worse than before, that can affect the decision as well.

 

[mag6125]

Edan sounds like you are talking about Intermates. That's what I get for home ivs too and it makes doing home ivs a piece of cake. As far as another oral med vs. ivs when I was that age they probably would have tried the oral but the docs seem to be much more aggressive in treatment now than they were back then. Make sure your doc knows his cough is worse than before, that can affect the decision as well.

 

[mag6125]

Edan sounds like you are talking about Intermates. That's what I get for home ivs too and it makes doing home ivs a piece of cake. As far as another oral med vs. ivs when I was that age they probably would have tried the oral but the docs seem to be much more aggressive in treatment now than they were back then. Make sure your doc knows his cough is worse than before, that can affect the decision as well.

 

[crickit715]

i would definatley express to the doc that the cough is getting much worse and ask what they think the odds are that the colomycin will knock it out....they may be trying to hold off on the iv antibiotics (which antibiotics are they planning on using??? tobi??) iv tobi, over an extended period of time can cause hearing loss, so they may just want to see if something else will work. my daughter was on iv tobi for 2 weeks but didnt have any side effects.... but she has never been on colomycin. sorry i cant be of much help, i would ask what their reasoning is behind wanting to try another inhaled med before iv and decide if what they tell you is worth the wait! <img src="i/expressions/face-icon-small-smile.gif" border="0"> good luck!

 

[crickit715]

i would definatley express to the doc that the cough is getting much worse and ask what they think the odds are that the colomycin will knock it out....they may be trying to hold off on the iv antibiotics (which antibiotics are they planning on using??? tobi??) iv tobi, over an extended period of time can cause hearing loss, so they may just want to see if something else will work. my daughter was on iv tobi for 2 weeks but didnt have any side effects.... but she has never been on colomycin. sorry i cant be of much help, i would ask what their reasoning is behind wanting to try another inhaled med before iv and decide if what they tell you is worth the wait! <img src="i/expressions/face-icon-small-smile.gif" border="0"> good luck!

 

[crickit715]

i would definatley express to the doc that the cough is getting much worse and ask what they think the odds are that the colomycin will knock it out....they may be trying to hold off on the iv antibiotics (which antibiotics are they planning on using??? tobi??) iv tobi, over an extended period of time can cause hearing loss, so they may just want to see if something else will work. my daughter was on iv tobi for 2 weeks but didnt have any side effects.... but she has never been on colomycin. sorry i cant be of much help, i would ask what their reasoning is behind wanting to try another inhaled med before iv and decide if what they tell you is worth the wait! <img src="i/expressions/face-icon-small-smile.gif" border="0"> good luck!