Water Born Bacteria

[AuntKarla]

Could someone please explain to me what this is.  My great
nephew (3 mon old CF) was diagnosed with this and was given a
medicine to take for 28 days.  He has not been given his
medicine like he should be.   I am concerned for his
well-being.  <br>
<br>
I am also concerned for him because he has not been given his
enzymes and vitamins either.  He has a sister who is (16 mon
old CF) and she has not been given her enzymes or vitamins
either.  <br>
<br>
I believe my niece is either in denial and or depression about her
children.  I am not sure how to help her.  She doesn't
let on that things are bothering her when I talk to her but you can
tell that something is wrong.  I know she is over-whelmed by
having 2 kids with CF.  <br>
<br>
Any advice would be greatly appreciated.

 

[AuntKarla]

Could someone please explain to me what this is.  My great
nephew (3 mon old CF) was diagnosed with this and was given a
medicine to take for 28 days.  He has not been given his
medicine like he should be.   I am concerned for his
well-being.  <br>
<br>
I am also concerned for him because he has not been given his
enzymes and vitamins either.  He has a sister who is (16 mon
old CF) and she has not been given her enzymes or vitamins
either.  <br>
<br>
I believe my niece is either in denial and or depression about her
children.  I am not sure how to help her.  She doesn't
let on that things are bothering her when I talk to her but you can
tell that something is wrong.  I know she is over-whelmed by
having 2 kids with CF.  <br>
<br>
Any advice would be greatly appreciated.

 

[AuntKarla]

Could someone please explain to me what this is.  My great
nephew (3 mon old CF) was diagnosed with this and was given a
medicine to take for 28 days.  He has not been given his
medicine like he should be.   I am concerned for his
well-being.  <br>
<br>
I am also concerned for him because he has not been given his
enzymes and vitamins either.  He has a sister who is (16 mon
old CF) and she has not been given her enzymes or vitamins
either.  <br>
<br>
I believe my niece is either in denial and or depression about her
children.  I am not sure how to help her.  She doesn't
let on that things are bothering her when I talk to her but you can
tell that something is wrong.  I know she is over-whelmed by
having 2 kids with CF.  <br>
<br>
Any advice would be greatly appreciated.

 

[my65roses4me]

There are many water born bacterias but Im not sure which one you are refering to. Cf is a hard and emotionally taxing disease to deal with. So your neice could very well be depressed.
My first suggestion is to let her know about this website so she can come here for support. She may feel lost as to what to do.
Do her kids see a CF dr or just a regular dr? A cf dr is very important in the care of cf patients. They can explain everything to your neice and how important the treatment of her kids disease is. The meds are very important as you seem to know. But not all cfers need enzymes. Some dont have the pancreatic problems. You would be able to tell if your neice nad nephew are thriving. Are they underweight? Do they need diaper changes more than normal do to pooping too much or have very loose bowels. You may already know that they need the enzymes or not but I was just trying to explain the symptoms just in case you aren't informed.
The best thing you can do for your neice is give her support and love and make sure she knows how important it is to treat the babies early to prevent the disease from worsening faster than it should. You seem very loving and caring, keep up the love!!!

 

[my65roses4me]

There are many water born bacterias but Im not sure which one you are refering to. Cf is a hard and emotionally taxing disease to deal with. So your neice could very well be depressed.
My first suggestion is to let her know about this website so she can come here for support. She may feel lost as to what to do.
Do her kids see a CF dr or just a regular dr? A cf dr is very important in the care of cf patients. They can explain everything to your neice and how important the treatment of her kids disease is. The meds are very important as you seem to know. But not all cfers need enzymes. Some dont have the pancreatic problems. You would be able to tell if your neice nad nephew are thriving. Are they underweight? Do they need diaper changes more than normal do to pooping too much or have very loose bowels. You may already know that they need the enzymes or not but I was just trying to explain the symptoms just in case you aren't informed.
The best thing you can do for your neice is give her support and love and make sure she knows how important it is to treat the babies early to prevent the disease from worsening faster than it should. You seem very loving and caring, keep up the love!!!

 

[my65roses4me]

There are many water born bacterias but Im not sure which one you are refering to. Cf is a hard and emotionally taxing disease to deal with. So your neice could very well be depressed.
My first suggestion is to let her know about this website so she can come here for support. She may feel lost as to what to do.
Do her kids see a CF dr or just a regular dr? A cf dr is very important in the care of cf patients. They can explain everything to your neice and how important the treatment of her kids disease is. The meds are very important as you seem to know. But not all cfers need enzymes. Some dont have the pancreatic problems. You would be able to tell if your neice nad nephew are thriving. Are they underweight? Do they need diaper changes more than normal do to pooping too much or have very loose bowels. You may already know that they need the enzymes or not but I was just trying to explain the symptoms just in case you aren't informed.
The best thing you can do for your neice is give her support and love and make sure she knows how important it is to treat the babies early to prevent the disease from worsening faster than it should. You seem very loving and caring, keep up the love!!!

 

[Alyssa]

Sounds to me like they are talking about pseudomonas -- it is a bateria that needs water to survive and many people with CF are treated for it with a 28 day supply of TOBI. Typically it is a lung infection with this bacteria in large number in the lungs - TOBI is an inhaled antibiotic that helps eradicate or bring down the number of bacteria. It is also common for a doctor to prescribe another oral antibiotic along with the inaled TOBI.

Many people refer to pseudomonas as PA (pseudomonas aeruginosa)

Yes, it is very important that the kids be given their enzymes and any other treatments -- please do everything you can to make sure the mom/family is getting the support or help they need to take care of their children

 

[Alyssa]

Sounds to me like they are talking about pseudomonas -- it is a bateria that needs water to survive and many people with CF are treated for it with a 28 day supply of TOBI. Typically it is a lung infection with this bacteria in large number in the lungs - TOBI is an inhaled antibiotic that helps eradicate or bring down the number of bacteria. It is also common for a doctor to prescribe another oral antibiotic along with the inaled TOBI.

Many people refer to pseudomonas as PA (pseudomonas aeruginosa)

Yes, it is very important that the kids be given their enzymes and any other treatments -- please do everything you can to make sure the mom/family is getting the support or help they need to take care of their children

 

[Alyssa]

Sounds to me like they are talking about pseudomonas -- it is a bateria that needs water to survive and many people with CF are treated for it with a 28 day supply of TOBI. Typically it is a lung infection with this bacteria in large number in the lungs - TOBI is an inhaled antibiotic that helps eradicate or bring down the number of bacteria. It is also common for a doctor to prescribe another oral antibiotic along with the inaled TOBI.

Many people refer to pseudomonas as PA (pseudomonas aeruginosa)

Yes, it is very important that the kids be given their enzymes and any other treatments -- please do everything you can to make sure the mom/family is getting the support or help they need to take care of their children

 

[AuntKarla]

Her kids see both a CF Dr and a regular Dr.  Her children both
have explosive BM's and need to have entire outfits changed about 5
times a day.  That is without taking their enzymes.  My
great niece has a bloated belly and I have been told the enzymes
would help with that.  <br>
<br>
I have a Special Needs child..so I know a little of what she is
going through.  My son has Angelman Syndrome and is consider
severe and profoundly mentally retarded...his functioning level is
that of a 1 year old.<br>
<br>
It's so hard for me to see her not giving her children a fighting
chance because they unlike my son can live a pretty normal
life.<br>
<br>
Thanks for writing and answering my questions.

 

[AuntKarla]

Her kids see both a CF Dr and a regular Dr.  Her children both
have explosive BM's and need to have entire outfits changed about 5
times a day.  That is without taking their enzymes.  My
great niece has a bloated belly and I have been told the enzymes
would help with that.  <br>
<br>
I have a Special Needs child..so I know a little of what she is
going through.  My son has Angelman Syndrome and is consider
severe and profoundly mentally retarded...his functioning level is
that of a 1 year old.<br>
<br>
It's so hard for me to see her not giving her children a fighting
chance because they unlike my son can live a pretty normal
life.<br>
<br>
Thanks for writing and answering my questions.

 

[AuntKarla]

Her kids see both a CF Dr and a regular Dr.  Her children both
have explosive BM's and need to have entire outfits changed about 5
times a day.  That is without taking their enzymes.  My
great niece has a bloated belly and I have been told the enzymes
would help with that.  <br>
<br>
I have a Special Needs child..so I know a little of what she is
going through.  My son has Angelman Syndrome and is consider
severe and profoundly mentally retarded...his functioning level is
that of a 1 year old.<br>
<br>
It's so hard for me to see her not giving her children a fighting
chance because they unlike my son can live a pretty normal
life.<br>
<br>
Thanks for writing and answering my questions.

 

[thelizardqueen]

Your niece needs to know that giving her kids their enzymes and treatments will improve the quality of their lives so greatly. Its far worse to not give them enzymes and treatment. Enzymes will rid them of the bloating, the explosive BMs, and will also put weight on them. The PA that they have needs to be treated as well, or their lungs will continue to get far worse. The TOBI cycle that you speak of will help with this.

Suggest this website to your niece, let her know that there are so many people dealing with what she is that could help her. Please try all you can to see that she and her family get the support they need.

 

[thelizardqueen]

Your niece needs to know that giving her kids their enzymes and treatments will improve the quality of their lives so greatly. Its far worse to not give them enzymes and treatment. Enzymes will rid them of the bloating, the explosive BMs, and will also put weight on them. The PA that they have needs to be treated as well, or their lungs will continue to get far worse. The TOBI cycle that you speak of will help with this.

Suggest this website to your niece, let her know that there are so many people dealing with what she is that could help her. Please try all you can to see that she and her family get the support they need.

 

[thelizardqueen]

Your niece needs to know that giving her kids their enzymes and treatments will improve the quality of their lives so greatly. Its far worse to not give them enzymes and treatment. Enzymes will rid them of the bloating, the explosive BMs, and will also put weight on them. The PA that they have needs to be treated as well, or their lungs will continue to get far worse. The TOBI cycle that you speak of will help with this.

Suggest this website to your niece, let her know that there are so many people dealing with what she is that could help her. Please try all you can to see that she and her family get the support they need.

 

[ktsmom]

Karla -

I can't NOT respond to this one. It sounds like you are right to be concerned. I strongly encourage you to do everything you possibly can.

Yes, of course she is overwhelmed, grieving, having trouble coping. She has every right to be and it is NORMAL for her to be feeling these things. The next step is for someone like you to help her learn how to deal with it, get hold of this and give her children the treatments they need to thrive and grow! And they CAN thrive and grow! CF is not a death sentence, although it can be so hard for parents to see that.

Do you live nearby? Are there any other family members that are willing to help you support and encourage your niece during this very difficult time? And I don't mean call her - go to her, and reiterate your concerns.

Its funny, but posting here is so therapeutic to me for me to deal with my own grief. Forgive me if I sound like I am lecturing. I certainly don't mean to.

Best of luck to you and your niece. I'm really glad that you are there for her and so tuned-in to her situation.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Karla -

I can't NOT respond to this one. It sounds like you are right to be concerned. I strongly encourage you to do everything you possibly can.

Yes, of course she is overwhelmed, grieving, having trouble coping. She has every right to be and it is NORMAL for her to be feeling these things. The next step is for someone like you to help her learn how to deal with it, get hold of this and give her children the treatments they need to thrive and grow! And they CAN thrive and grow! CF is not a death sentence, although it can be so hard for parents to see that.

Do you live nearby? Are there any other family members that are willing to help you support and encourage your niece during this very difficult time? And I don't mean call her - go to her, and reiterate your concerns.

Its funny, but posting here is so therapeutic to me for me to deal with my own grief. Forgive me if I sound like I am lecturing. I certainly don't mean to.

Best of luck to you and your niece. I'm really glad that you are there for her and so tuned-in to her situation.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Karla -

I can't NOT respond to this one. It sounds like you are right to be concerned. I strongly encourage you to do everything you possibly can.

Yes, of course she is overwhelmed, grieving, having trouble coping. She has every right to be and it is NORMAL for her to be feeling these things. The next step is for someone like you to help her learn how to deal with it, get hold of this and give her children the treatments they need to thrive and grow! And they CAN thrive and grow! CF is not a death sentence, although it can be so hard for parents to see that.

Do you live nearby? Are there any other family members that are willing to help you support and encourage your niece during this very difficult time? And I don't mean call her - go to her, and reiterate your concerns.

Its funny, but posting here is so therapeutic to me for me to deal with my own grief. Forgive me if I sound like I am lecturing. I certainly don't mean to.

Best of luck to you and your niece. I'm really glad that you are there for her and so tuned-in to her situation.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[folione]

One thing I did not see in the other posts was that you might try encouraging your niece to get her children's medicines on track by getting her to realize it will improve HER quality of life. I certainly was much happier when my son was diagnosed at 2 months; prior to enzymes he was constantly hungry because everything went right through or right back up and my spouse and I were in constant agony about it - not to mention constant clean-up mode. Within a week of starting enzymes he was actually able to spend some time in clean diapers/clothes and we benefited right along with him.

Although I certainly empathize with the desire to hide under a rock and pretend it's not happening and understand how the presence of all the medicines is a painful multiple-times-per-day reminder that life is imperfect, I also think it might be dangerously close to neglect if she's knowingly failing to provide her children with presecribed medicines.

 

[folione]

One thing I did not see in the other posts was that you might try encouraging your niece to get her children's medicines on track by getting her to realize it will improve HER quality of life. I certainly was much happier when my son was diagnosed at 2 months; prior to enzymes he was constantly hungry because everything went right through or right back up and my spouse and I were in constant agony about it - not to mention constant clean-up mode. Within a week of starting enzymes he was actually able to spend some time in clean diapers/clothes and we benefited right along with him.

Although I certainly empathize with the desire to hide under a rock and pretend it's not happening and understand how the presence of all the medicines is a painful multiple-times-per-day reminder that life is imperfect, I also think it might be dangerously close to neglect if she's knowingly failing to provide her children with presecribed medicines.