May Danielle rest in peace...

D

Diane

New member
I can answer the cepacia question....B.cepacia short for Burkholderia cepacia, is a bacterial- antibiotic resistant infection that is almost impossible to get rid of. Some people do however get rid of it, some do well with it and dont have much problem with it , and some decline slowly, and unfortunately some decline more rapidly. The best way to avoid it is to avoid contact with other cf patients ( since you dont know which ones may have it), and avoid going into the hospital ( which is where i got it). If you have to be hospitalized, be sure to sterilize EVERYTHING you will touch, and wash hands often.
As for your son with cf there is no real way to guage what problems he may face as would be true for ANY child healthy or otherwise. Keeping up with treatments and taking the best care of him possible and avoiding getting sick are the best ways to help him keep up his good health.
 
D

Diane

New member
I can answer the cepacia question....B.cepacia short for Burkholderia cepacia, is a bacterial- antibiotic resistant infection that is almost impossible to get rid of. Some people do however get rid of it, some do well with it and dont have much problem with it , and some decline slowly, and unfortunately some decline more rapidly. The best way to avoid it is to avoid contact with other cf patients ( since you dont know which ones may have it), and avoid going into the hospital ( which is where i got it). If you have to be hospitalized, be sure to sterilize EVERYTHING you will touch, and wash hands often.
As for your son with cf there is no real way to guage what problems he may face as would be true for ANY child healthy or otherwise. Keeping up with treatments and taking the best care of him possible and avoiding getting sick are the best ways to help him keep up his good health.
 
J

Jane

Digital opinion leader
Hi,

Were you asking about MY sons? They are 10 and 14 w/cf and a little complicated. My older son was diagnosed when he was 2 months (mild failure to thrive but VERY salty skin). He was very well until he was 9 when he required his first clean-out. He's always had trouble gaining weight and now has a g-tube. He's very athletic and plays tennis and basketball. My 10 year old has been a little less healthy and has had clean-outs more frequently. He also has a g-tube. Both boys have had two sinus surgeries to help their chronic sinusitus.
I always felt that once we begin to understand this disease and how it affects our kids, things change. It is SO complex that there isn't a course that is the same for all people w/cf. As you can read in the topic list, there is so much to learn. I didn't like to read these kinds of forums until recently because its really overwhelming. I just wanted to be able to get a grasp on what my family had to deal with.

One day at a time.
Jane
 
J

Jane

Digital opinion leader
Hi,

Were you asking about MY sons? They are 10 and 14 w/cf and a little complicated. My older son was diagnosed when he was 2 months (mild failure to thrive but VERY salty skin). He was very well until he was 9 when he required his first clean-out. He's always had trouble gaining weight and now has a g-tube. He's very athletic and plays tennis and basketball. My 10 year old has been a little less healthy and has had clean-outs more frequently. He also has a g-tube. Both boys have had two sinus surgeries to help their chronic sinusitus.
I always felt that once we begin to understand this disease and how it affects our kids, things change. It is SO complex that there isn't a course that is the same for all people w/cf. As you can read in the topic list, there is so much to learn. I didn't like to read these kinds of forums until recently because its really overwhelming. I just wanted to be able to get a grasp on what my family had to deal with.

One day at a time.
Jane
 
A

anonymous

New member
I don't respond very often, but have found this forum to be a great source of support and information. Although I didn't know Danielle, I do know her mother. She works in the dining services at my college. Though I have only spoken with her once, since finding out that a student had CF, she has always asked about me and in talking with her I felt safe in knowing that there would be someone there to help me (my own family is 6+ hours away).This is a blow to those of us who know Danielle's mom. My thoughts and prayers go out to the Soares family. From my brief encounters with them, I know they are an exceptional family.
Breathe easy Danielle.

Jamie (19/f)

"Two roads diverged in a wood and I-
I took the one less traveled by
And that has made all the difference" ~ Robert Frost.
 
A

anonymous

New member
I don't respond very often, but have found this forum to be a great source of support and information. Although I didn't know Danielle, I do know her mother. She works in the dining services at my college. Though I have only spoken with her once, since finding out that a student had CF, she has always asked about me and in talking with her I felt safe in knowing that there would be someone there to help me (my own family is 6+ hours away).This is a blow to those of us who know Danielle's mom. My thoughts and prayers go out to the Soares family. From my brief encounters with them, I know they are an exceptional family.
Breathe easy Danielle.

Jamie (19/f)

"Two roads diverged in a wood and I-
I took the one less traveled by
And that has made all the difference" ~ Robert Frost.
 
A

anonymous

New member
Hi Jane - What is a clean out? I'm sorry for sounding so not with it. Can I ask why the boys have to be on a g-tube? I guess it is time I should be reading and learning more about his disease - so I know what the future could hold. Even though it scares me! I guess I've been in my own little world thinking that maybe he'll just do neb and percussion and take enzymes and vitamins the rest of his life. I pray to God that maybe it will stay that simple!! Thanks for responding!

Mother of Tanner wcf almost 9
 
A

anonymous

New member
Hi Jane - What is a clean out? I'm sorry for sounding so not with it. Can I ask why the boys have to be on a g-tube? I guess it is time I should be reading and learning more about his disease - so I know what the future could hold. Even though it scares me! I guess I've been in my own little world thinking that maybe he'll just do neb and percussion and take enzymes and vitamins the rest of his life. I pray to God that maybe it will stay that simple!! Thanks for responding!

Mother of Tanner wcf almost 9
 
A

anonymous

New member
Hi,

A clean out is just a term for a course of IV antibiotics usually in the hospital. Most of the time it lasts two weeks, but can be lengthier depending on the reason. My boys have clean outs (other people call them tune ups) when their pfts drop, if thier x-rays get worse or if they are sick.

Someitmes its nice to stay out of the issues. Just to handle what you have to do daily is about all you can do sometimes.
 
A

anonymous

New member
Hi,

A clean out is just a term for a course of IV antibiotics usually in the hospital. Most of the time it lasts two weeks, but can be lengthier depending on the reason. My boys have clean outs (other people call them tune ups) when their pfts drop, if thier x-rays get worse or if they are sick.

Someitmes its nice to stay out of the issues. Just to handle what you have to do daily is about all you can do sometimes.
 
J

Jane

Digital opinion leader
Me again.

The boys needed g-tubes because they had trouble holding their weight. They have a-typical bacteria which complicates everything. The doctors felt we should bulk up their weight while we were treating the bugs. It will be two years in March.
 
J

Jane

Digital opinion leader
Me again.

The boys needed g-tubes because they had trouble holding their weight. They have a-typical bacteria which complicates everything. The doctors felt we should bulk up their weight while we were treating the bugs. It will be two years in March.
 
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