Parents with CF

[Keepercjr]

I'm sorry you're feeling bad <img src="i/expressions/face-icon-small-sad.gif" border="0"> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.

 

[beleache]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Keepercjr</b></i>

I'm sorry you're feeling bad <img src=""> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.[/q


Hi Caroline,

Certain meds , as far as I know Tobi & Amikasin, both inhaled abx, shouldn't be done with someone else in the room, including pets..

Aj. There is a filter for the neb that you can use so you can be in the same room..

 

[beleache]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Keepercjr</b></i>

I'm sorry you're feeling bad <img src=""> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.[/q


Hi Caroline,

Certain meds , as far as I know Tobi & Amikasin, both inhaled abx, shouldn't be done with someone else in the room, including pets..

Aj. There is a filter for the neb that you can use so you can be in the same room..

 

[beleache]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Keepercjr</b></i>
<br />
<br />I'm sorry you're feeling bad <img src=""> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.[/q
<br />
<br />
<br />Hi Caroline,
<br />
<br />Certain meds , as far as I know Tobi & Amikasin, both inhaled abx, shouldn't be done with someone else in the room, including pets..
<br />
<br />Aj. There is a filter for the neb that you can use so you can be in the same room..

 

[littlemisssilly]

I don't have any children yet but, I'm in Aus too and like Kirstyn said, the e flow is great but it is incredibly expensive. I have had my e flow for 4 yrs now but I still use the old pari compressor for evening meds simply because the aerosol head of the e flow only lasts for around 3-4 months and at $160 per head, it's expensive (I use the e flow with my am hypertonic saline before work otherwise I'd never get out of the house!).

The aerosol head becomes eventually clogged no matter how well you look after it. If you do get the e flow after you have disinfected the handset make sure you allow it to air dry in the open position (ie unclipped) otherwise the plastic will morph and you handset will only last 2 months before it starts to leak all the meds (the new handsets are over $170 too). I learnt the hard way -no thanks to techni pro who are really useless and unhelpful - I learnt the tip from pari in germany after I emailed them.

Kirstyn - where do you get your pari neb cups from if not from techni pro ???? I am so sick of dealing with them, they're so unhelpful and dismissive, I have tried ordering from on line stores o/seas but have always been told that they do not deliver to Aus ???<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[littlemisssilly]

I don't have any children yet but, I'm in Aus too and like Kirstyn said, the e flow is great but it is incredibly expensive. I have had my e flow for 4 yrs now but I still use the old pari compressor for evening meds simply because the aerosol head of the e flow only lasts for around 3-4 months and at $160 per head, it's expensive (I use the e flow with my am hypertonic saline before work otherwise I'd never get out of the house!).

The aerosol head becomes eventually clogged no matter how well you look after it. If you do get the e flow after you have disinfected the handset make sure you allow it to air dry in the open position (ie unclipped) otherwise the plastic will morph and you handset will only last 2 months before it starts to leak all the meds (the new handsets are over $170 too). I learnt the hard way -no thanks to techni pro who are really useless and unhelpful - I learnt the tip from pari in germany after I emailed them.

Kirstyn - where do you get your pari neb cups from if not from techni pro ???? I am so sick of dealing with them, they're so unhelpful and dismissive, I have tried ordering from on line stores o/seas but have always been told that they do not deliver to Aus ???<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[littlemisssilly]

I don't have any children yet but, I'm in Aus too and like Kirstyn said, the e flow is great but it is incredibly expensive. I have had my e flow for 4 yrs now but I still use the old pari compressor for evening meds simply because the aerosol head of the e flow only lasts for around 3-4 months and at $160 per head, it's expensive (I use the e flow with my am hypertonic saline before work otherwise I'd never get out of the house!).
<br />
<br />The aerosol head becomes eventually clogged no matter how well you look after it. If you do get the e flow after you have disinfected the handset make sure you allow it to air dry in the open position (ie unclipped) otherwise the plastic will morph and you handset will only last 2 months before it starts to leak all the meds (the new handsets are over $170 too). I learnt the hard way -no thanks to techni pro who are really useless and unhelpful - I learnt the tip from pari in germany after I emailed them.
<br />
<br />Kirstyn - where do you get your pari neb cups from if not from techni pro ???? I am so sick of dealing with them, they're so unhelpful and dismissive, I have tried ordering from on line stores o/seas but have always been told that they do not deliver to Aus ???<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[Littlemiss]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Keepercjr</b></i>

I'm sorry you're feeling bad <img src=""> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.</end quote></div>

Like Joni said, it's the nebbed abx that are the prob. IDK if you use them at all in the US but they are horrid things (taste, smell, blech!), definately no good for bubs.

Just wondering though, do you do pulmozyme with kids in the room? I haven't, but more because I was thinking better safe than sorry.

I think I need to prioritise my health, so hard to do, but putting myself last isn't helping anyone. Wish I could get a cleaner though! Haven't had the chance to clean our shower since Abby was born (ewwww), did it yesterday (not fun!!).

 

[Littlemiss]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Keepercjr</b></i>

I'm sorry you're feeling bad <img src=""> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.</end quote>

Like Joni said, it's the nebbed abx that are the prob. IDK if you use them at all in the US but they are horrid things (taste, smell, blech!), definately no good for bubs.

Just wondering though, do you do pulmozyme with kids in the room? I haven't, but more because I was thinking better safe than sorry.

I think I need to prioritise my health, so hard to do, but putting myself last isn't helping anyone. Wish I could get a cleaner though! Haven't had the chance to clean our shower since Abby was born (ewwww), did it yesterday (not fun!!).

 

[Littlemiss]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Keepercjr</b></i>
<br />
<br />I'm sorry you're feeling bad <img src=""> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.</end quote>
<br />
<br />Like Joni said, it's the nebbed abx that are the prob. IDK if you use them at all in the US but they are horrid things (taste, smell, blech!), definately no good for bubs.
<br />
<br />Just wondering though, do you do pulmozyme with kids in the room? I haven't, but more because I was thinking better safe than sorry.
<br />
<br />I think I need to prioritise my health, so hard to do, but putting myself last isn't helping anyone. Wish I could get a cleaner though! Haven't had the chance to clean our shower since Abby was born (ewwww), did it yesterday (not fun!!).

 

[Littlemiss]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>
DO NOT GO THROUGH techni-pro the rip-off merchants who supply all our pari stuff here in aus. You can save so much for both eflow and sprints online.

</end quote></div>

Links??

 

[Littlemiss]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>
DO NOT GO THROUGH techni-pro the rip-off merchants who supply all our pari stuff here in aus. You can save so much for both eflow and sprints online.

</end quote>

Links??

 

[Littlemiss]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>
<br /> DO NOT GO THROUGH techni-pro the rip-off merchants who supply all our pari stuff here in aus. You can save so much for both eflow and sprints online.
<br />
<br /></end quote>
<br />
<br />Links??

 

[hmw]

<div class="FTQUOTE"><begin quote>Just wondering though, do you do pulmozyme with kids in the room? I haven't, but more because I was thinking better safe than sorry.</end quote></div>
I know this thread is meant for parents with cf, but I just wanted to interject that I have a child with cf, and have never been told that she needs to do her nebs with her siblings out of the room and I've never seen any parents of any children with cf post this either... it would be an interesting question to ask them to get more input on the issue of safety of exposing kids (including babies) to the inhaled medications.

 

[hmw]

<div class="FTQUOTE"><begin quote>Just wondering though, do you do pulmozyme with kids in the room? I haven't, but more because I was thinking better safe than sorry.</end quote>
I know this thread is meant for parents with cf, but I just wanted to interject that I have a child with cf, and have never been told that she needs to do her nebs with her siblings out of the room and I've never seen any parents of any children with cf post this either... it would be an interesting question to ask them to get more input on the issue of safety of exposing kids (including babies) to the inhaled medications.

 

[hmw]

<div class="FTQUOTE"><begin quote>Just wondering though, do you do pulmozyme with kids in the room? I haven't, but more because I was thinking better safe than sorry.</end quote>
<br />I know this thread is meant for parents with cf, but I just wanted to interject that I have a child with cf, and have never been told that she needs to do her nebs with her siblings out of the room and I've never seen any parents of any children with cf post this either... it would be an interesting question to ask them to get more input on the issue of safety of exposing kids (including babies) to the inhaled medications.

 

[LouLou]

At around 3 months I had to re-evaluate my priorities. I made the decision that my health would take precidence over everything else. I discussed it with my husband because I needed his buy-in as well as support since some noticeable changes would be made.

I'm certainly happy I did this becuase even so I still ended up having to have IV antibiotics 10+ times since then (only 3 times prior) and have no idea where my health would be if it hadn't been our biggest priority over the last 3 yrs.

I encourage you to do the same. Think about every aspect of your household upkeep, child rearing, food purchase and prep, bill pay, laundry, etc. Write it all down. You could make a column for initials of who takes care of what now. And then a column of who takes care of what in the future. Consider farming some of the work out. Examples: have hubby drop laundry at laundromat weekly to lighten the laundry load. Hire someone to clean. Remember you can re-evaluate this yearly and it won't always be as difficult as it is now. Now that my son is 3 he is much more helpful and independent. He doesn't make nearly the dirty laundry he used to. Also he doesn't outgrow clothes mid-season.

My specific piece of advice is that if anyone ever offers to help figure out a way whether it's bringing you food or taking Abby for a couple hours.

I have Isaac go to a babysitters every Wed. morning. 3 hours a week doesn't make much of difference for me but it does keep the 3 of us comfortable with the situation and then when I'm sick and I need her to take him for 3-5 FULL days it's no problem.

You may want to consider spending add'l money to make things happen. And like I said this isn't forever. It's to get you over the hump. Also until V770 comes to you in a few years. Wouldn't it be a shame if you lost substantial lung function in the meantime?

Finally with regards to nebs. My son is in the same room often. When he was little I did it earlier in the morning when he was still sleeping and I have always done my evening treatments after he goes to bed. Now I do one mid day too. What can I say if you stay home with your child they ARE going to be around you doing A LOT of lung care. If you want her out of the room for abx then start young and be consistant just like with any other rules you are teaching her. Is the worry abx resistance?

 

[LouLou]

At around 3 months I had to re-evaluate my priorities. I made the decision that my health would take precidence over everything else. I discussed it with my husband because I needed his buy-in as well as support since some noticeable changes would be made.

I'm certainly happy I did this becuase even so I still ended up having to have IV antibiotics 10+ times since then (only 3 times prior) and have no idea where my health would be if it hadn't been our biggest priority over the last 3 yrs.

I encourage you to do the same. Think about every aspect of your household upkeep, child rearing, food purchase and prep, bill pay, laundry, etc. Write it all down. You could make a column for initials of who takes care of what now. And then a column of who takes care of what in the future. Consider farming some of the work out. Examples: have hubby drop laundry at laundromat weekly to lighten the laundry load. Hire someone to clean. Remember you can re-evaluate this yearly and it won't always be as difficult as it is now. Now that my son is 3 he is much more helpful and independent. He doesn't make nearly the dirty laundry he used to. Also he doesn't outgrow clothes mid-season.

My specific piece of advice is that if anyone ever offers to help figure out a way whether it's bringing you food or taking Abby for a couple hours.

I have Isaac go to a babysitters every Wed. morning. 3 hours a week doesn't make much of difference for me but it does keep the 3 of us comfortable with the situation and then when I'm sick and I need her to take him for 3-5 FULL days it's no problem.

You may want to consider spending add'l money to make things happen. And like I said this isn't forever. It's to get you over the hump. Also until V770 comes to you in a few years. Wouldn't it be a shame if you lost substantial lung function in the meantime?

Finally with regards to nebs. My son is in the same room often. When he was little I did it earlier in the morning when he was still sleeping and I have always done my evening treatments after he goes to bed. Now I do one mid day too. What can I say if you stay home with your child they ARE going to be around you doing A LOT of lung care. If you want her out of the room for abx then start young and be consistant just like with any other rules you are teaching her. Is the worry abx resistance?

 

[LouLou]

At around 3 months I had to re-evaluate my priorities. I made the decision that my health would take precidence over everything else. I discussed it with my husband because I needed his buy-in as well as support since some noticeable changes would be made.
<br />
<br />I'm certainly happy I did this becuase even so I still ended up having to have IV antibiotics 10+ times since then (only 3 times prior) and have no idea where my health would be if it hadn't been our biggest priority over the last 3 yrs.
<br />
<br />I encourage you to do the same. Think about every aspect of your household upkeep, child rearing, food purchase and prep, bill pay, laundry, etc. Write it all down. You could make a column for initials of who takes care of what now. And then a column of who takes care of what in the future. Consider farming some of the work out. Examples: have hubby drop laundry at laundromat weekly to lighten the laundry load. Hire someone to clean. Remember you can re-evaluate this yearly and it won't always be as difficult as it is now. Now that my son is 3 he is much more helpful and independent. He doesn't make nearly the dirty laundry he used to. Also he doesn't outgrow clothes mid-season.
<br />
<br />My specific piece of advice is that if anyone ever offers to help figure out a way whether it's bringing you food or taking Abby for a couple hours.
<br />
<br />I have Isaac go to a babysitters every Wed. morning. 3 hours a week doesn't make much of difference for me but it does keep the 3 of us comfortable with the situation and then when I'm sick and I need her to take him for 3-5 FULL days it's no problem.
<br />
<br />You may want to consider spending add'l money to make things happen. And like I said this isn't forever. It's to get you over the hump. Also until V770 comes to you in a few years. Wouldn't it be a shame if you lost substantial lung function in the meantime?
<br />
<br />Finally with regards to nebs. My son is in the same room often. When he was little I did it earlier in the morning when he was still sleeping and I have always done my evening treatments after he goes to bed. Now I do one mid day too. What can I say if you stay home with your child they ARE going to be around you doing A LOT of lung care. If you want her out of the room for abx then start young and be consistant just like with any other rules you are teaching her. Is the worry abx resistance?

 

[Keepercjr]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Littlemiss</b></i>


Like Joni said, it's the nebbed abx that are the prob. IDK if you use them at all in the US but they are horrid things (taste, smell, blech!), definately no good for bubs.


</end quote></div>

I do inhaled antibiotics w/ the kids in the room - tobra and cayston. Nobody ever once mentioned that they shouldn't be in the room. But even if they had, I would ask for studies to prove their point. Having the kids out of the room is VERY inconvenient and not possible a lot of the time. Now that I'm using the eflow however, I just stand at the kitchen counter for the 2-5 minutes that it takes. But previously I did tobra in my recliner in the living room.

Honestly, if the trade off is having Abby in the room or not doing your meds, I'd opt for doing my meds. Like I said, the amount anybody (children, pets, etc) would get second hand is so small that I wouldn't let it stop you from getting your treatments done. Inhaled anitbiotics are absorbed in *much* less quantity in our blood stream than oral or IV - so divide that by however little anybody would inhale second and and you've got even less.


I also agree w/ Lauren about re prioritizing your health. I have a cleaning lady come every 2 weeks. But DH and I agreed that if I were to get sick or sicker that she would come more often. She does the heavy cleaning like mopping, cleaning the toilets and showers, ect. She also straightens up (which only lasts a few hours - ha!). My parents also help out a lot with the kids. Not necessarily taking them (though they do often) but more like making sure they're fed and playing with them. My mom will also throw a load of laundry in while she's over sometimes. If I wanted her to, my cleaning lady would do laundry and change the sheets, but I don't want her to for now (plus the extras would cost more since she would be here longer).