Our newborn newly diagnosed with homozygous df508, CPT questions

M

mesler

New member
Hello all,

Our daughter Isabelle, 8 weeks, was diagnosed about 3 weeks ago, and we just got to see a CF specialist just last week, and I have some questions regarding CPT that I was hoping someone here would be kind enough to help us with.

First of all, one thing that I was not satisfied with in regard to our visit with the specialist was his seeming lack of interest in CPT. One thing I didn't like was that they really didn't go over CPT with us. We got a DVD to watch, and the video said that we should expect to talk with a CPT person in the hospital, which did not happen. Also, upon inquiring about percussors to use, we were given some kind of infant mask to use, which obviously, had a hole in it.. Now, this guy has been treating CF patients for a few decades, but this made me have second thoughts about him. In response to this, I think we are going to go to the other CF clinic in our area.

So I want to get a percussor for her asap, and I want to have a routine that we do daily. I was thinking a hand-held electric percussor to ensure consistency and maximum effectiveness until she's big enough to wear a vest. Can any of you recommend one? I don't want to wait until we get to see the other CF clinic.

Thanks so much,
Mike
 
M

mesler

New member
Hello all,

Our daughter Isabelle, 8 weeks, was diagnosed about 3 weeks ago, and we just got to see a CF specialist just last week, and I have some questions regarding CPT that I was hoping someone here would be kind enough to help us with.

First of all, one thing that I was not satisfied with in regard to our visit with the specialist was his seeming lack of interest in CPT. One thing I didn't like was that they really didn't go over CPT with us. We got a DVD to watch, and the video said that we should expect to talk with a CPT person in the hospital, which did not happen. Also, upon inquiring about percussors to use, we were given some kind of infant mask to use, which obviously, had a hole in it.. Now, this guy has been treating CF patients for a few decades, but this made me have second thoughts about him. In response to this, I think we are going to go to the other CF clinic in our area.

So I want to get a percussor for her asap, and I want to have a routine that we do daily. I was thinking a hand-held electric percussor to ensure consistency and maximum effectiveness until she's big enough to wear a vest. Can any of you recommend one? I don't want to wait until we get to see the other CF clinic.

Thanks so much,
Mike
 
M

mesler

New member
Hello all,

Our daughter Isabelle, 8 weeks, was diagnosed about 3 weeks ago, and we just got to see a CF specialist just last week, and I have some questions regarding CPT that I was hoping someone here would be kind enough to help us with.

First of all, one thing that I was not satisfied with in regard to our visit with the specialist was his seeming lack of interest in CPT. One thing I didn't like was that they really didn't go over CPT with us. We got a DVD to watch, and the video said that we should expect to talk with a CPT person in the hospital, which did not happen. Also, upon inquiring about percussors to use, we were given some kind of infant mask to use, which obviously, had a hole in it.. Now, this guy has been treating CF patients for a few decades, but this made me have second thoughts about him. In response to this, I think we are going to go to the other CF clinic in our area.

So I want to get a percussor for her asap, and I want to have a routine that we do daily. I was thinking a hand-held electric percussor to ensure consistency and maximum effectiveness until she's big enough to wear a vest. Can any of you recommend one? I don't want to wait until we get to see the other CF clinic.

Thanks so much,
Mike
 
M

mesler

New member
Hello all,

Our daughter Isabelle, 8 weeks, was diagnosed about 3 weeks ago, and we just got to see a CF specialist just last week, and I have some questions regarding CPT that I was hoping someone here would be kind enough to help us with.

First of all, one thing that I was not satisfied with in regard to our visit with the specialist was his seeming lack of interest in CPT. One thing I didn't like was that they really didn't go over CPT with us. We got a DVD to watch, and the video said that we should expect to talk with a CPT person in the hospital, which did not happen. Also, upon inquiring about percussors to use, we were given some kind of infant mask to use, which obviously, had a hole in it.. Now, this guy has been treating CF patients for a few decades, but this made me have second thoughts about him. In response to this, I think we are going to go to the other CF clinic in our area.

So I want to get a percussor for her asap, and I want to have a routine that we do daily. I was thinking a hand-held electric percussor to ensure consistency and maximum effectiveness until she's big enough to wear a vest. Can any of you recommend one? I don't want to wait until we get to see the other CF clinic.

Thanks so much,
Mike
 
M

mesler

New member
Hello all,
<br />
<br />Our daughter Isabelle, 8 weeks, was diagnosed about 3 weeks ago, and we just got to see a CF specialist just last week, and I have some questions regarding CPT that I was hoping someone here would be kind enough to help us with.
<br />
<br />First of all, one thing that I was not satisfied with in regard to our visit with the specialist was his seeming lack of interest in CPT. One thing I didn't like was that they really didn't go over CPT with us. We got a DVD to watch, and the video said that we should expect to talk with a CPT person in the hospital, which did not happen. Also, upon inquiring about percussors to use, we were given some kind of infant mask to use, which obviously, had a hole in it.. Now, this guy has been treating CF patients for a few decades, but this made me have second thoughts about him. In response to this, I think we are going to go to the other CF clinic in our area.
<br />
<br />So I want to get a percussor for her asap, and I want to have a routine that we do daily. I was thinking a hand-held electric percussor to ensure consistency and maximum effectiveness until she's big enough to wear a vest. Can any of you recommend one? I don't want to wait until we get to see the other CF clinic.
<br />
<br />Thanks so much,
<br />Mike
 
M

Mommy2Zeke

Guest
We've used this one at the hospital.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.medsystems.com/">http://www.medsystems.com/</a>

and this one at home.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.g5.com/products/vibracare/">http://www.g5.com/products/vibracare/</a>

Definitely for a smaller baby I would use the vibracare or just do it by hand.
 
M

Mommy2Zeke

Guest
We've used this one at the hospital.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.medsystems.com/">http://www.medsystems.com/</a>

and this one at home.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.g5.com/products/vibracare/">http://www.g5.com/products/vibracare/</a>

Definitely for a smaller baby I would use the vibracare or just do it by hand.
 
M

Mommy2Zeke

Guest
We've used this one at the hospital.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.medsystems.com/">http://www.medsystems.com/</a>

and this one at home.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.g5.com/products/vibracare/">http://www.g5.com/products/vibracare/</a>

Definitely for a smaller baby I would use the vibracare or just do it by hand.
 
M

Mommy2Zeke

Guest
We've used this one at the hospital.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.medsystems.com/">http://www.medsystems.com/</a>

and this one at home.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.g5.com/products/vibracare/">http://www.g5.com/products/vibracare/</a>

Definitely for a smaller baby I would use the vibracare or just do it by hand.
 
M

Mommy2Zeke

Guest
We've used this one at the hospital.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.medsystems.com/">http://www.medsystems.com/</a>
<br />
<br />and this one at home.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.g5.com/products/vibracare/">http://www.g5.com/products/vibracare/</a>
<br />
<br />Definitely for a smaller baby I would use the vibracare or just do it by hand.
 
K

kitomd21

New member
Gentle taps by hand are fine for an infant - at least, this is what we were advised. Our daughter was diagnosed via newborn screening and we've been doing CPT since that time, 2 - 3x daily. I feel that my hand is more effective than a percussor, my husband prefers the latter. If you are cupping your hand properly, there really isn't a benefit of one over the other. I'm much more forceful now that she is older (almost 2 yrs).

Was your doctor less interested in starting CPT at a young age or just not that interested in CPT all together? There are definitely two schools of thought with children/infants and CPT. You'll find that some don't start CPT until later in their first year and some start at diagnosis. I'm of the philosophy that sooner is better!!!

Also, it's not uncommon to switch centers due feelings of inadequate treatment! We did just that last year. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kitomd21

New member
Gentle taps by hand are fine for an infant - at least, this is what we were advised. Our daughter was diagnosed via newborn screening and we've been doing CPT since that time, 2 - 3x daily. I feel that my hand is more effective than a percussor, my husband prefers the latter. If you are cupping your hand properly, there really isn't a benefit of one over the other. I'm much more forceful now that she is older (almost 2 yrs).

Was your doctor less interested in starting CPT at a young age or just not that interested in CPT all together? There are definitely two schools of thought with children/infants and CPT. You'll find that some don't start CPT until later in their first year and some start at diagnosis. I'm of the philosophy that sooner is better!!!

Also, it's not uncommon to switch centers due feelings of inadequate treatment! We did just that last year. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kitomd21

New member
Gentle taps by hand are fine for an infant - at least, this is what we were advised. Our daughter was diagnosed via newborn screening and we've been doing CPT since that time, 2 - 3x daily. I feel that my hand is more effective than a percussor, my husband prefers the latter. If you are cupping your hand properly, there really isn't a benefit of one over the other. I'm much more forceful now that she is older (almost 2 yrs).

Was your doctor less interested in starting CPT at a young age or just not that interested in CPT all together? There are definitely two schools of thought with children/infants and CPT. You'll find that some don't start CPT until later in their first year and some start at diagnosis. I'm of the philosophy that sooner is better!!!

Also, it's not uncommon to switch centers due feelings of inadequate treatment! We did just that last year. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kitomd21

New member
Gentle taps by hand are fine for an infant - at least, this is what we were advised. Our daughter was diagnosed via newborn screening and we've been doing CPT since that time, 2 - 3x daily. I feel that my hand is more effective than a percussor, my husband prefers the latter. If you are cupping your hand properly, there really isn't a benefit of one over the other. I'm much more forceful now that she is older (almost 2 yrs).

Was your doctor less interested in starting CPT at a young age or just not that interested in CPT all together? There are definitely two schools of thought with children/infants and CPT. You'll find that some don't start CPT until later in their first year and some start at diagnosis. I'm of the philosophy that sooner is better!!!

Also, it's not uncommon to switch centers due feelings of inadequate treatment! We did just that last year. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kitomd21

New member
Gentle taps by hand are fine for an infant - at least, this is what we were advised. Our daughter was diagnosed via newborn screening and we've been doing CPT since that time, 2 - 3x daily. I feel that my hand is more effective than a percussor, my husband prefers the latter. If you are cupping your hand properly, there really isn't a benefit of one over the other. I'm much more forceful now that she is older (almost 2 yrs).
<br />
<br />Was your doctor less interested in starting CPT at a young age or just not that interested in CPT all together? There are definitely two schools of thought with children/infants and CPT. You'll find that some don't start CPT until later in their first year and some start at diagnosis. I'm of the philosophy that sooner is better!!!
<br />
<br />Also, it's not uncommon to switch centers due feelings of inadequate treatment! We did just that last year. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mesler

New member
Thanks so much for the quick responses!

Our daughter is about 8.5lbs, so our hands feel way too large which was why I was thinking about an electronic percussor. Perhaps they are not, but it feels that way to my wife and I. We're going to see about getting a G5 percussor.

She has a pretty nasty cough, which means she's producing mucus. Seems to me that if her body is producing the mucus, and if mucus is prone to be abnormally thick/sticky, that it would be a good idea to perform any therapies possible to help her to keep that stuff out of her lungs.

Thanks again!

Mike
 
M

mesler

New member
Thanks so much for the quick responses!

Our daughter is about 8.5lbs, so our hands feel way too large which was why I was thinking about an electronic percussor. Perhaps they are not, but it feels that way to my wife and I. We're going to see about getting a G5 percussor.

She has a pretty nasty cough, which means she's producing mucus. Seems to me that if her body is producing the mucus, and if mucus is prone to be abnormally thick/sticky, that it would be a good idea to perform any therapies possible to help her to keep that stuff out of her lungs.

Thanks again!

Mike
 
M

mesler

New member
Thanks so much for the quick responses!

Our daughter is about 8.5lbs, so our hands feel way too large which was why I was thinking about an electronic percussor. Perhaps they are not, but it feels that way to my wife and I. We're going to see about getting a G5 percussor.

She has a pretty nasty cough, which means she's producing mucus. Seems to me that if her body is producing the mucus, and if mucus is prone to be abnormally thick/sticky, that it would be a good idea to perform any therapies possible to help her to keep that stuff out of her lungs.

Thanks again!

Mike
 
M

mesler

New member
Thanks so much for the quick responses!

Our daughter is about 8.5lbs, so our hands feel way too large which was why I was thinking about an electronic percussor. Perhaps they are not, but it feels that way to my wife and I. We're going to see about getting a G5 percussor.

She has a pretty nasty cough, which means she's producing mucus. Seems to me that if her body is producing the mucus, and if mucus is prone to be abnormally thick/sticky, that it would be a good idea to perform any therapies possible to help her to keep that stuff out of her lungs.

Thanks again!

Mike
 
M

mesler

New member
Thanks so much for the quick responses!
<br />
<br />Our daughter is about 8.5lbs, so our hands feel way too large which was why I was thinking about an electronic percussor. Perhaps they are not, but it feels that way to my wife and I. We're going to see about getting a G5 percussor.
<br />
<br />She has a pretty nasty cough, which means she's producing mucus. Seems to me that if her body is producing the mucus, and if mucus is prone to be abnormally thick/sticky, that it would be a good idea to perform any therapies possible to help her to keep that stuff out of her lungs.
<br />
<br />Thanks again!
<br />
<br />Mike
 
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