CF children having to be confinded to hospital rooms

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littledebbie

New member
It should be the same for everyone. Like Caitlin said, you never know who has what and if they even know they have it. Also, if everyone could ease off the BIG BAD CEPACIA attitude a little it would be nice, we all know cepacia is a bad thing but let's not make people feel like lepers or dead people walking. If you put the shoe on your kid for a minute and how you would like them to be treated if they did have cepacia (which they very well might someday, through no fault of anyones) I think you can see why it's important everyone follow the same rules.

Also, when you do visit your kiddo in the hospital ask for a mask for them and head outside for an hour to walk around or whatever, I think usually this is allowed as long as you leave the building. Fresh air, excerise, no bug exposure, really lifts the spirit.
 
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littledebbie

New member
It should be the same for everyone. Like Caitlin said, you never know who has what and if they even know they have it. Also, if everyone could ease off the BIG BAD CEPACIA attitude a little it would be nice, we all know cepacia is a bad thing but let's not make people feel like lepers or dead people walking. If you put the shoe on your kid for a minute and how you would like them to be treated if they did have cepacia (which they very well might someday, through no fault of anyones) I think you can see why it's important everyone follow the same rules.

Also, when you do visit your kiddo in the hospital ask for a mask for them and head outside for an hour to walk around or whatever, I think usually this is allowed as long as you leave the building. Fresh air, excerise, no bug exposure, really lifts the spirit.
 
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anonymous

New member
Our hospital just incorporated that rule also, which I do agree with. My ds was admitted for two weeks in January and at the time there were 6 other cf children on her floor. I was nervous if we just walked past each other on the way to pt or something. At one point, another cf child was getting on the elevator and we had to say sorry, but it's not worth the risk and waited for the next one. We did a pretty good job of keeping her in her room but were allowed to leave to do pt (she wore a mask). We also talked pt into loaning us a tricycle that she could ride as part of her therapy and since we were in the hospital and her schedule was so out of wack we worked it that she could ride the trike downstairs on the main floor in the late evenings when it wasn't so busy (she also wore a mask for this). This helped burn some of the stored up energy a three year old gets when cooped up all day. Other than that, I have to thank God for the portable dvd players, what a live-saver when she can't do anything but lay in bed all day.
 
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anonymous

New member
Our hospital just incorporated that rule also, which I do agree with. My ds was admitted for two weeks in January and at the time there were 6 other cf children on her floor. I was nervous if we just walked past each other on the way to pt or something. At one point, another cf child was getting on the elevator and we had to say sorry, but it's not worth the risk and waited for the next one. We did a pretty good job of keeping her in her room but were allowed to leave to do pt (she wore a mask). We also talked pt into loaning us a tricycle that she could ride as part of her therapy and since we were in the hospital and her schedule was so out of wack we worked it that she could ride the trike downstairs on the main floor in the late evenings when it wasn't so busy (she also wore a mask for this). This helped burn some of the stored up energy a three year old gets when cooped up all day. Other than that, I have to thank God for the portable dvd players, what a live-saver when she can't do anything but lay in bed all day.
 
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anonymous

New member
I'm concerned with all bugs and have problems with our local clinic not having any protocols -- everyone together in a teeny tiny waiting room. The doctors told us it was okay 'cuz they haven't had any cepacia patients -- that was a quote from the head of the local program. If DS hadn't been diagnosed at an accredited CF facility in a city 200 miles away, we wouldn't know ANYTHING about cross contamination. And I'm sure there are people on this site who maybe haven't been informed about the risks of letting CFers play with each other. A friend of mine's grandchild goes to an accreditted CF clinic and indicated they still have a community playroom with toys at their facility and they weren't informed about cross contamination until after the child spent most of the morning there, playing with other kids

At our local clinic my concern is with new patients and not knowing what they grow until after the clinic appointment be it staph/mrsa, hib, PA, cepacia. The local clinic feels that it's more important for the parents/patients to interact and get support from each other because a number of them come from quite a long ways away.

And yes, I am concerned with cepacia when hearing from someone on another site with cepacia who felt the CFF protocol was silly and continued to attend cf funtions. I just feel, better safe than sorry. DS came home from the NICU with a nasty bug that's caused by improper handwashing and fecal material and ended right back in the hospital for two more weeks, battled symptoms for another two months after that. I'd rather have DS bored and confined to his room than have him sick, endure another spinal tap, cough so hard his lunch comes up... Liza
 
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anonymous

New member
I'm concerned with all bugs and have problems with our local clinic not having any protocols -- everyone together in a teeny tiny waiting room. The doctors told us it was okay 'cuz they haven't had any cepacia patients -- that was a quote from the head of the local program. If DS hadn't been diagnosed at an accredited CF facility in a city 200 miles away, we wouldn't know ANYTHING about cross contamination. And I'm sure there are people on this site who maybe haven't been informed about the risks of letting CFers play with each other. A friend of mine's grandchild goes to an accreditted CF clinic and indicated they still have a community playroom with toys at their facility and they weren't informed about cross contamination until after the child spent most of the morning there, playing with other kids

At our local clinic my concern is with new patients and not knowing what they grow until after the clinic appointment be it staph/mrsa, hib, PA, cepacia. The local clinic feels that it's more important for the parents/patients to interact and get support from each other because a number of them come from quite a long ways away.

And yes, I am concerned with cepacia when hearing from someone on another site with cepacia who felt the CFF protocol was silly and continued to attend cf funtions. I just feel, better safe than sorry. DS came home from the NICU with a nasty bug that's caused by improper handwashing and fecal material and ended right back in the hospital for two more weeks, battled symptoms for another two months after that. I'd rather have DS bored and confined to his room than have him sick, endure another spinal tap, cough so hard his lunch comes up... Liza
 
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anonymous

New member
Honestly that stinks. I have 3 kids with CF....16,11 and 3 months.

The 16 year old and 11 year old have shared a room for 6 years. At that time only the now 11 year old was diagnosed. Anyway the 16 year old has cultured MRSA, the 11 year old never has. Both have cultured pseudo BUT both were resistant/susceptible to different drugs. 11 year old has cultured regular staph and h.flu......16 year old has cultured both as well but different strains.

The 3 month old has had regular staph and steno maltophila...a bacteria neither of his sisters has had.

MANY healthy people culture MRSA, Pseudo is easily found anywhere water stands etc. Its impossible to keep a child from coming into contact with these things and no guarantee that they will culture them...just like my 11 year old has never cultured MRSA even though she lives with and shared a room with a sister who does culture it.

I think getting over paranoid like some posts I have seen is bad for the parent and child! Let your child live a little.

My girls swim in lakes, at the beach, in the river etc.Ash and Skye ride horses and Ash cleans stalls etc, volunteers at the humane society, cleans the litterbox at home. They have contact with other CFers which obviuosly includes eachother. Both are exceptionally healthy for CF kids.

We chose private practice docs for cross contamination issues as I think a CF clinic is my worst fear yet I bet most of you take your kids to one. I would be far more worried about that.

Between the 3 kiddos they have been in 3 different children's hospitals, 2 local ones and the only time they were isolation was Ashleigh(16) when she started culturing MRSA. Otherwise they are free to roam and go to the playroom etc.

I also am insulted at the homeschooling comments. My girls were homeschooled up until this year and Ash is once again homeschooled and I can promise they are a lot less sheltered than most of your kids! Homeschooling doesn't equal unsocialized and sheltered!
 
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Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Homeschooling doesn't equal unsocialized and sheltered!</end quote></div>

Homeschooling doesn't <b><i>*always*</b></i> equal unsocialized and sheltered.
 
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