What have we learnt that we were not told???

[jacksmom]

that is insane! Clinics not promoting the vest until after there are problems?!?!?!
With our clinic the whole atmosphere is...Prevention Prevention Prevention!!!!! My son got his vest at 15 months even though he was on the small side and he has not had any lung issues.

I guess with all the issues I have with my sons clinic, atleast they are smart when it comes to this.

The only thing I can think of is to read the directions and instructions to all medications. It is scary that some doctors and nurses do not know how to administer some meds correctly.

My son was in the hosptial for the first 4 1/2 months of life, and not once was his prilosec given to him at the correct time while he was there. It was always given to him in the middle of his feeding (he has a feeding tube).
It wasn't until we brought him home that we found out that it needs to be given on an empty stomach 20-30 minutes before eating. No wonder he was always vomiting! The medicine they were given to him to help wasn't working as effectly as it should have becuase the staff did not take the time to make sure they were giving the drug at the correct time.

Other then that I can't think of anything else. But of course by the time we got to clinic we had learned so much from books and the internet on our own.
I would suggest to anyone newly diagnosised, or with a child newly diagnosised education yourself as much as you can. Do not rely on the clinic to tell you everything you need to know. (No malic intended towards clinics)
Carey

 

[jacksmom]

that is insane! Clinics not promoting the vest until after there are problems?!?!?!
With our clinic the whole atmosphere is...Prevention Prevention Prevention!!!!! My son got his vest at 15 months even though he was on the small side and he has not had any lung issues.

I guess with all the issues I have with my sons clinic, atleast they are smart when it comes to this.

The only thing I can think of is to read the directions and instructions to all medications. It is scary that some doctors and nurses do not know how to administer some meds correctly.

My son was in the hosptial for the first 4 1/2 months of life, and not once was his prilosec given to him at the correct time while he was there. It was always given to him in the middle of his feeding (he has a feeding tube).
It wasn't until we brought him home that we found out that it needs to be given on an empty stomach 20-30 minutes before eating. No wonder he was always vomiting! The medicine they were given to him to help wasn't working as effectly as it should have becuase the staff did not take the time to make sure they were giving the drug at the correct time.

Other then that I can't think of anything else. But of course by the time we got to clinic we had learned so much from books and the internet on our own.
I would suggest to anyone newly diagnosised, or with a child newly diagnosised education yourself as much as you can. Do not rely on the clinic to tell you everything you need to know. (No malic intended towards clinics)
Carey

 

[jacksmom]

that is insane! Clinics not promoting the vest until after there are problems?!?!?!
With our clinic the whole atmosphere is...Prevention Prevention Prevention!!!!! My son got his vest at 15 months even though he was on the small side and he has not had any lung issues.

I guess with all the issues I have with my sons clinic, atleast they are smart when it comes to this.

The only thing I can think of is to read the directions and instructions to all medications. It is scary that some doctors and nurses do not know how to administer some meds correctly.

My son was in the hosptial for the first 4 1/2 months of life, and not once was his prilosec given to him at the correct time while he was there. It was always given to him in the middle of his feeding (he has a feeding tube).
It wasn't until we brought him home that we found out that it needs to be given on an empty stomach 20-30 minutes before eating. No wonder he was always vomiting! The medicine they were given to him to help wasn't working as effectly as it should have becuase the staff did not take the time to make sure they were giving the drug at the correct time.

Other then that I can't think of anything else. But of course by the time we got to clinic we had learned so much from books and the internet on our own.
I would suggest to anyone newly diagnosised, or with a child newly diagnosised education yourself as much as you can. Do not rely on the clinic to tell you everything you need to know. (No malic intended towards clinics)
Carey

 

[jacksmom]

that is insane! Clinics not promoting the vest until after there are problems?!?!?!
With our clinic the whole atmosphere is...Prevention Prevention Prevention!!!!! My son got his vest at 15 months even though he was on the small side and he has not had any lung issues.

I guess with all the issues I have with my sons clinic, atleast they are smart when it comes to this.

The only thing I can think of is to read the directions and instructions to all medications. It is scary that some doctors and nurses do not know how to administer some meds correctly.

My son was in the hosptial for the first 4 1/2 months of life, and not once was his prilosec given to him at the correct time while he was there. It was always given to him in the middle of his feeding (he has a feeding tube).
It wasn't until we brought him home that we found out that it needs to be given on an empty stomach 20-30 minutes before eating. No wonder he was always vomiting! The medicine they were given to him to help wasn't working as effectly as it should have becuase the staff did not take the time to make sure they were giving the drug at the correct time.

Other then that I can't think of anything else. But of course by the time we got to clinic we had learned so much from books and the internet on our own.
I would suggest to anyone newly diagnosised, or with a child newly diagnosised education yourself as much as you can. Do not rely on the clinic to tell you everything you need to know. (No malic intended towards clinics)
Carey

 

[jacksmom]

that is insane! Clinics not promoting the vest until after there are problems?!?!?!
With our clinic the whole atmosphere is...Prevention Prevention Prevention!!!!! My son got his vest at 15 months even though he was on the small side and he has not had any lung issues.

I guess with all the issues I have with my sons clinic, atleast they are smart when it comes to this.

The only thing I can think of is to read the directions and instructions to all medications. It is scary that some doctors and nurses do not know how to administer some meds correctly.

My son was in the hosptial for the first 4 1/2 months of life, and not once was his prilosec given to him at the correct time while he was there. It was always given to him in the middle of his feeding (he has a feeding tube).
It wasn't until we brought him home that we found out that it needs to be given on an empty stomach 20-30 minutes before eating. No wonder he was always vomiting! The medicine they were given to him to help wasn't working as effectly as it should have becuase the staff did not take the time to make sure they were giving the drug at the correct time.

Other then that I can't think of anything else. But of course by the time we got to clinic we had learned so much from books and the internet on our own.
I would suggest to anyone newly diagnosised, or with a child newly diagnosised education yourself as much as you can. Do not rely on the clinic to tell you everything you need to know. (No malic intended towards clinics)
Carey

 

[Ratatosk]

Our CF doctor told us from day one to practice good lung care before problems occured. That CFers are born with normal lungs, but with time, increased infections, thick mucus that they will be affected. So from day one we were doing cpt 4 times a day.

Enzymes was another issue the nurses at the hospital didn't seem to understand. I ran home for a brief errand only to find that the nurse had given DS a bottle, sans enzymes.

Oh, and I always request the lab reports (culture, blood tests) and the notes after each clinic visit. Once in awhile I'll get a call from the nurse at the local clinic who tells me that every thing is fine, only to find out that DS has cultured something and the doctor has opted not to treat it at this time because he's asymptomatic.

 

[Ratatosk]

Our CF doctor told us from day one to practice good lung care before problems occured. That CFers are born with normal lungs, but with time, increased infections, thick mucus that they will be affected. So from day one we were doing cpt 4 times a day.

Enzymes was another issue the nurses at the hospital didn't seem to understand. I ran home for a brief errand only to find that the nurse had given DS a bottle, sans enzymes.

Oh, and I always request the lab reports (culture, blood tests) and the notes after each clinic visit. Once in awhile I'll get a call from the nurse at the local clinic who tells me that every thing is fine, only to find out that DS has cultured something and the doctor has opted not to treat it at this time because he's asymptomatic.

 

[Ratatosk]

Our CF doctor told us from day one to practice good lung care before problems occured. That CFers are born with normal lungs, but with time, increased infections, thick mucus that they will be affected. So from day one we were doing cpt 4 times a day.

Enzymes was another issue the nurses at the hospital didn't seem to understand. I ran home for a brief errand only to find that the nurse had given DS a bottle, sans enzymes.

Oh, and I always request the lab reports (culture, blood tests) and the notes after each clinic visit. Once in awhile I'll get a call from the nurse at the local clinic who tells me that every thing is fine, only to find out that DS has cultured something and the doctor has opted not to treat it at this time because he's asymptomatic.

 

[Ratatosk]

Our CF doctor told us from day one to practice good lung care before problems occured. That CFers are born with normal lungs, but with time, increased infections, thick mucus that they will be affected. So from day one we were doing cpt 4 times a day.

Enzymes was another issue the nurses at the hospital didn't seem to understand. I ran home for a brief errand only to find that the nurse had given DS a bottle, sans enzymes.

Oh, and I always request the lab reports (culture, blood tests) and the notes after each clinic visit. Once in awhile I'll get a call from the nurse at the local clinic who tells me that every thing is fine, only to find out that DS has cultured something and the doctor has opted not to treat it at this time because he's asymptomatic.

 

[Ratatosk]

Our CF doctor told us from day one to practice good lung care before problems occured. That CFers are born with normal lungs, but with time, increased infections, thick mucus that they will be affected. So from day one we were doing cpt 4 times a day.

Enzymes was another issue the nurses at the hospital didn't seem to understand. I ran home for a brief errand only to find that the nurse had given DS a bottle, sans enzymes.

Oh, and I always request the lab reports (culture, blood tests) and the notes after each clinic visit. Once in awhile I'll get a call from the nurse at the local clinic who tells me that every thing is fine, only to find out that DS has cultured something and the doctor has opted not to treat it at this time because he's asymptomatic.

 

[SEANP]

As a parent of a CF'er initially you are flooded with so much info at the beginning that it takes along time to sort things out. After the initial shock wears off I can recall acouple of things I wish we had known. (1) the proper techinique and the importance of cleaning the nebulizer cups/masks etc. At first we just washed with hot soapy water and I was moritified to find out that was not killing pseudomonas etc (thanks to this site). (2) There were treatments out there like hypertonic saline that were never discussed with us (again thanks to this site I learned about them) (3) The serious chances of catching other bugs from other CF'ers. (4) Never take a no answer from your insurance company (or your CF doctor) with out questioning why and asking for an apeal. Im sure there are others but that is all I can think of right now.
Sean

 

[SEANP]

As a parent of a CF'er initially you are flooded with so much info at the beginning that it takes along time to sort things out. After the initial shock wears off I can recall acouple of things I wish we had known. (1) the proper techinique and the importance of cleaning the nebulizer cups/masks etc. At first we just washed with hot soapy water and I was moritified to find out that was not killing pseudomonas etc (thanks to this site). (2) There were treatments out there like hypertonic saline that were never discussed with us (again thanks to this site I learned about them) (3) The serious chances of catching other bugs from other CF'ers. (4) Never take a no answer from your insurance company (or your CF doctor) with out questioning why and asking for an apeal. Im sure there are others but that is all I can think of right now.
Sean

 

[SEANP]

As a parent of a CF'er initially you are flooded with so much info at the beginning that it takes along time to sort things out. After the initial shock wears off I can recall acouple of things I wish we had known. (1) the proper techinique and the importance of cleaning the nebulizer cups/masks etc. At first we just washed with hot soapy water and I was moritified to find out that was not killing pseudomonas etc (thanks to this site). (2) There were treatments out there like hypertonic saline that were never discussed with us (again thanks to this site I learned about them) (3) The serious chances of catching other bugs from other CF'ers. (4) Never take a no answer from your insurance company (or your CF doctor) with out questioning why and asking for an apeal. Im sure there are others but that is all I can think of right now.
Sean

 

[SEANP]

As a parent of a CF'er initially you are flooded with so much info at the beginning that it takes along time to sort things out. After the initial shock wears off I can recall acouple of things I wish we had known. (1) the proper techinique and the importance of cleaning the nebulizer cups/masks etc. At first we just washed with hot soapy water and I was moritified to find out that was not killing pseudomonas etc (thanks to this site). (2) There were treatments out there like hypertonic saline that were never discussed with us (again thanks to this site I learned about them) (3) The serious chances of catching other bugs from other CF'ers. (4) Never take a no answer from your insurance company (or your CF doctor) with out questioning why and asking for an apeal. Im sure there are others but that is all I can think of right now.
Sean

 

[SEANP]

As a parent of a CF'er initially you are flooded with so much info at the beginning that it takes along time to sort things out. After the initial shock wears off I can recall acouple of things I wish we had known. (1) the proper techinique and the importance of cleaning the nebulizer cups/masks etc. At first we just washed with hot soapy water and I was moritified to find out that was not killing pseudomonas etc (thanks to this site). (2) There were treatments out there like hypertonic saline that were never discussed with us (again thanks to this site I learned about them) (3) The serious chances of catching other bugs from other CF'ers. (4) Never take a no answer from your insurance company (or your CF doctor) with out questioning why and asking for an apeal. Im sure there are others but that is all I can think of right now.
Sean

 

[Sakem]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
DS does go to swimming lessons, swims in pools and lakes.</end quote></div>

LAKES can become contaminated with germs from sewage, animal waste, water runoff following rainfall, fecal accidents, and germs rinsed off the bottoms of swimmers

 

[Sakem]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
DS does go to swimming lessons, swims in pools and lakes.</end quote></div>

LAKES can become contaminated with germs from sewage, animal waste, water runoff following rainfall, fecal accidents, and germs rinsed off the bottoms of swimmers

 

[Sakem]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
DS does go to swimming lessons, swims in pools and lakes.</end quote></div>

LAKES can become contaminated with germs from sewage, animal waste, water runoff following rainfall, fecal accidents, and germs rinsed off the bottoms of swimmers

 

[Sakem]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
DS does go to swimming lessons, swims in pools and lakes.</end quote>

LAKES can become contaminated with germs from sewage, animal waste, water runoff following rainfall, fecal accidents, and germs rinsed off the bottoms of swimmers

 

[Sakem]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
DS does go to swimming lessons, swims in pools and lakes.</end quote>

LAKES can become contaminated with germs from sewage, animal waste, water runoff following rainfall, fecal accidents, and germs rinsed off the bottoms of swimmers