CPTs

[kale65]

When my daughter was diagnosed at 5 days, we had our first appt. with our CF center 3 days later. They started her on enzymes that day. The next appt. (2 weeks later) included blood tests to see her vitamin levels and to verify that her pancreas was insufficient, which it is. However, I was told that her vitamin levels were good and that she would not need to take the Adek vitamins at this time and just buy her some Poly-Vi-Sol vitamins at Wal-Mart. They haven't checked those vitamin levels since (she is now 4 1/2 months). Should they be? I also read people referring to CPTs all of the time on this forum. There has been no mention of CPTs to me at the CF center and I'm wondering why. I understand that she is very young still, but I have read of child the same age or younger that are having chest therapy (i.e. vest). I don't want to be the mom that lets something slip through the cracks because I have very little experience in dealing with CF. Can anyone explain to me why they believe none of this has been mentioned to me yet? (I have only read of CPTs in books and here). Should I be demanding that something more be done with my daughter?

-----------------------------------------------------

Mom of a BEAUTIFUL baby girl named KALE w/cf (homozygous delta f508)
& a BEAUTIFUL daughter named Ashlyn no cf

 

[kale65]

When my daughter was diagnosed at 5 days, we had our first appt. with our CF center 3 days later. They started her on enzymes that day. The next appt. (2 weeks later) included blood tests to see her vitamin levels and to verify that her pancreas was insufficient, which it is. However, I was told that her vitamin levels were good and that she would not need to take the Adek vitamins at this time and just buy her some Poly-Vi-Sol vitamins at Wal-Mart. They haven't checked those vitamin levels since (she is now 4 1/2 months). Should they be? I also read people referring to CPTs all of the time on this forum. There has been no mention of CPTs to me at the CF center and I'm wondering why. I understand that she is very young still, but I have read of child the same age or younger that are having chest therapy (i.e. vest). I don't want to be the mom that lets something slip through the cracks because I have very little experience in dealing with CF. Can anyone explain to me why they believe none of this has been mentioned to me yet? (I have only read of CPTs in books and here). Should I be demanding that something more be done with my daughter?

-----------------------------------------------------

Mom of a BEAUTIFUL baby girl named KALE w/cf (homozygous delta f508)
& a BEAUTIFUL daughter named Ashlyn no cf

 

[kale65]

When my daughter was diagnosed at 5 days, we had our first appt. with our CF center 3 days later. They started her on enzymes that day. The next appt. (2 weeks later) included blood tests to see her vitamin levels and to verify that her pancreas was insufficient, which it is. However, I was told that her vitamin levels were good and that she would not need to take the Adek vitamins at this time and just buy her some Poly-Vi-Sol vitamins at Wal-Mart. They haven't checked those vitamin levels since (she is now 4 1/2 months). Should they be? I also read people referring to CPTs all of the time on this forum. There has been no mention of CPTs to me at the CF center and I'm wondering why. I understand that she is very young still, but I have read of child the same age or younger that are having chest therapy (i.e. vest). I don't want to be the mom that lets something slip through the cracks because I have very little experience in dealing with CF. Can anyone explain to me why they believe none of this has been mentioned to me yet? (I have only read of CPTs in books and here). Should I be demanding that something more be done with my daughter?

-----------------------------------------------------

Mom of a BEAUTIFUL baby girl named KALE w/cf (homozygous delta f508)
& a BEAUTIFUL daughter named Ashlyn no cf

 

[kale65]

When my daughter was diagnosed at 5 days, we had our first appt. with our CF center 3 days later. They started her on enzymes that day. The next appt. (2 weeks later) included blood tests to see her vitamin levels and to verify that her pancreas was insufficient, which it is. However, I was told that her vitamin levels were good and that she would not need to take the Adek vitamins at this time and just buy her some Poly-Vi-Sol vitamins at Wal-Mart. They haven't checked those vitamin levels since (she is now 4 1/2 months). Should they be? I also read people referring to CPTs all of the time on this forum. There has been no mention of CPTs to me at the CF center and I'm wondering why. I understand that she is very young still, but I have read of child the same age or younger that are having chest therapy (i.e. vest). I don't want to be the mom that lets something slip through the cracks because I have very little experience in dealing with CF. Can anyone explain to me why they believe none of this has been mentioned to me yet? (I have only read of CPTs in books and here). Should I be demanding that something more be done with my daughter?

-----------------------------------------------------

Mom of a BEAUTIFUL baby girl named KALE w/cf (homozygous delta f508)
& a BEAUTIFUL daughter named Ashlyn no cf

 

[kale65]

When my daughter was diagnosed at 5 days, we had our first appt. with our CF center 3 days later. They started her on enzymes that day. The next appt. (2 weeks later) included blood tests to see her vitamin levels and to verify that her pancreas was insufficient, which it is. However, I was told that her vitamin levels were good and that she would not need to take the Adek vitamins at this time and just buy her some Poly-Vi-Sol vitamins at Wal-Mart. They haven't checked those vitamin levels since (she is now 4 1/2 months). Should they be? I also read people referring to CPTs all of the time on this forum. There has been no mention of CPTs to me at the CF center and I'm wondering why. I understand that she is very young still, but I have read of child the same age or younger that are having chest therapy (i.e. vest). I don't want to be the mom that lets something slip through the cracks because I have very little experience in dealing with CF. Can anyone explain to me why they believe none of this has been mentioned to me yet? (I have only read of CPTs in books and here). Should I be demanding that something more be done with my daughter?

-----------------------------------------------------

Mom of a BEAUTIFUL baby girl named KALE w/cf (homozygous delta f508)
& a BEAUTIFUL daughter named Ashlyn no cf

 

[JazzysMom]

First of all Congrats on your baby!

Your baby is too young for the vest, but definitely not for CPT. Each doctor/clinic varies a bit even those who are accredited by the CF Foundation.

QUite often they wait for the CFer to show signs before starting it. I, personally, dont think that is wise. Too often by the times you see signs it has been building for awhile & that often can lead to damage.

Ask why they havent. If you want to start it there is no reason why you shouldnt even if they dont "prescribe" it at this age. Many babies fall asleep with it & IMHO the earlier you start the easier it is for them to get use to it.

If you have any other ?? give a shout, but this is something you need to ask THEM!

HUGS

 

[JazzysMom]

First of all Congrats on your baby!

Your baby is too young for the vest, but definitely not for CPT. Each doctor/clinic varies a bit even those who are accredited by the CF Foundation.

QUite often they wait for the CFer to show signs before starting it. I, personally, dont think that is wise. Too often by the times you see signs it has been building for awhile & that often can lead to damage.

Ask why they havent. If you want to start it there is no reason why you shouldnt even if they dont "prescribe" it at this age. Many babies fall asleep with it & IMHO the earlier you start the easier it is for them to get use to it.

If you have any other ?? give a shout, but this is something you need to ask THEM!

HUGS

 

[JazzysMom]

First of all Congrats on your baby!

Your baby is too young for the vest, but definitely not for CPT. Each doctor/clinic varies a bit even those who are accredited by the CF Foundation.

QUite often they wait for the CFer to show signs before starting it. I, personally, dont think that is wise. Too often by the times you see signs it has been building for awhile & that often can lead to damage.

Ask why they havent. If you want to start it there is no reason why you shouldnt even if they dont "prescribe" it at this age. Many babies fall asleep with it & IMHO the earlier you start the easier it is for them to get use to it.

If you have any other ?? give a shout, but this is something you need to ask THEM!

HUGS

 

[JazzysMom]

First of all Congrats on your baby!

Your baby is too young for the vest, but definitely not for CPT. Each doctor/clinic varies a bit even those who are accredited by the CF Foundation.

QUite often they wait for the CFer to show signs before starting it. I, personally, dont think that is wise. Too often by the times you see signs it has been building for awhile & that often can lead to damage.

Ask why they havent. If you want to start it there is no reason why you shouldnt even if they dont "prescribe" it at this age. Many babies fall asleep with it & IMHO the earlier you start the easier it is for them to get use to it.

If you have any other ?? give a shout, but this is something you need to ask THEM!

HUGS

 

[JazzysMom]

First of all Congrats on your baby!

Your baby is too young for the vest, but definitely not for CPT. Each doctor/clinic varies a bit even those who are accredited by the CF Foundation.

QUite often they wait for the CFer to show signs before starting it. I, personally, dont think that is wise. Too often by the times you see signs it has been building for awhile & that often can lead to damage.

Ask why they havent. If you want to start it there is no reason why you shouldnt even if they dont "prescribe" it at this age. Many babies fall asleep with it & IMHO the earlier you start the easier it is for them to get use to it.

If you have any other ?? give a shout, but this is something you need to ask THEM!

HUGS

 

[Ratatosk]

Our CF doctor in the City had us start CPT right away. Stressed preventative care even though there weren't symptoms. Locally, our CF doctors wondered why we bothered -- sorta told us it wasn't necessary unless there were symptoms. As far as vitamin levels -- DS gets his done once a year -- once when we were unable to get adeks vitamins, the dietician indicated that we could use polyvisol for the short term, but she felt it was more important that we get back on a CF vitamin because normal baby vitamin drops didn't have zinc in them.

I did get this link from another site discussing CPT. I once had a really good copy with pictures of different positions from the children's hospital, but it's not on their site anymore:

<a target=_blank class=ftalternatingbarlinklarge href="http://health.yahoo.com/respiratory-treatment/performing-postural-drainage-and-chest-percussion-for-cystic-fibrosis/healthwise--ug1720.html">http://health.yahoo.com/respir...ealthwise--ug1720.html</a>

 

[Ratatosk]

Our CF doctor in the City had us start CPT right away. Stressed preventative care even though there weren't symptoms. Locally, our CF doctors wondered why we bothered -- sorta told us it wasn't necessary unless there were symptoms. As far as vitamin levels -- DS gets his done once a year -- once when we were unable to get adeks vitamins, the dietician indicated that we could use polyvisol for the short term, but she felt it was more important that we get back on a CF vitamin because normal baby vitamin drops didn't have zinc in them.

I did get this link from another site discussing CPT. I once had a really good copy with pictures of different positions from the children's hospital, but it's not on their site anymore:

<a target=_blank class=ftalternatingbarlinklarge href="http://health.yahoo.com/respiratory-treatment/performing-postural-drainage-and-chest-percussion-for-cystic-fibrosis/healthwise--ug1720.html">http://health.yahoo.com/respir...ealthwise--ug1720.html</a>

 

[Ratatosk]

Our CF doctor in the City had us start CPT right away. Stressed preventative care even though there weren't symptoms. Locally, our CF doctors wondered why we bothered -- sorta told us it wasn't necessary unless there were symptoms. As far as vitamin levels -- DS gets his done once a year -- once when we were unable to get adeks vitamins, the dietician indicated that we could use polyvisol for the short term, but she felt it was more important that we get back on a CF vitamin because normal baby vitamin drops didn't have zinc in them.

I did get this link from another site discussing CPT. I once had a really good copy with pictures of different positions from the children's hospital, but it's not on their site anymore:

<a target=_blank class=ftalternatingbarlinklarge href="http://health.yahoo.com/respiratory-treatment/performing-postural-drainage-and-chest-percussion-for-cystic-fibrosis/healthwise--ug1720.html">http://health.yahoo.com/respir...ealthwise--ug1720.html</a>

 

[Ratatosk]

Our CF doctor in the City had us start CPT right away. Stressed preventative care even though there weren't symptoms. Locally, our CF doctors wondered why we bothered -- sorta told us it wasn't necessary unless there were symptoms. As far as vitamin levels -- DS gets his done once a year -- once when we were unable to get adeks vitamins, the dietician indicated that we could use polyvisol for the short term, but she felt it was more important that we get back on a CF vitamin because normal baby vitamin drops didn't have zinc in them.

I did get this link from another site discussing CPT. I once had a really good copy with pictures of different positions from the children's hospital, but it's not on their site anymore:

<a target=_blank class=ftalternatingbarlinklarge href="http://health.yahoo.com/respiratory-treatment/performing-postural-drainage-and-chest-percussion-for-cystic-fibrosis/healthwise--ug1720.html">http://health.yahoo.com/respir...ealthwise--ug1720.html</a>

 

[Ratatosk]

Our CF doctor in the City had us start CPT right away. Stressed preventative care even though there weren't symptoms. Locally, our CF doctors wondered why we bothered -- sorta told us it wasn't necessary unless there were symptoms. As far as vitamin levels -- DS gets his done once a year -- once when we were unable to get adeks vitamins, the dietician indicated that we could use polyvisol for the short term, but she felt it was more important that we get back on a CF vitamin because normal baby vitamin drops didn't have zinc in them.

I did get this link from another site discussing CPT. I once had a really good copy with pictures of different positions from the children's hospital, but it's not on their site anymore:

<a target=_blank class=ftalternatingbarlinklarge href="http://health.yahoo.com/respiratory-treatment/performing-postural-drainage-and-chest-percussion-for-cystic-fibrosis/healthwise--ug1720.html">http://health.yahoo.com/respir...ealthwise--ug1720.html</a>

 

[Mommafirst]

I had this same question when I first came here. At our first clinic we were not told anything about doing airway clearance. I came here and read about it and really got uptight thinking my CF center was remiss and was I going to need to switch, etc. .... you get the point. So I called the center, I spoke with the CF nurse and asked her point blank. Her answer was that we absolutely could get started with CPT immediately and she set up an appointment with the PT to teach us how the following week.

Upon pushing further I learned that our center takes the philosophy that as long as the child isn't presenting any lung issues on diagnosis, that they give the parents one quarter (until the next clinic) to let everything sink in and absorb, before adding the CPT.

Whether this is the right approach or not is certainly debateable. But their feeling is that newly diagnosed parents are under soooo much stress, there is so much to cope with, so much new to add to your routine, that they add things like nebs and CPT slowly, so long as it is not going to do any harm to the child to go a few months without them.

I don't know how I feel about this approach, honestly. But I do know that if ALL of it was thrown at me at the original clinic that was already 3 hours long, I may have not made it home that day, LOL!!

We started CPT as soon as I pushed for it, they were happy to oblige. We started albuterol nebbed (and then switched to inhaler which is soooo much easier) the first time she developed a cold with a cough. Now they are part of our routine, and we will be adding pulmozyme to our routine too.

If the slow integration bothers you, call your CF center. I'm guessing they are doing it for your benefit and if you aren't comfortable with it push. If they don't respond in a way you like, then consider switching doctors. That was my take. I was pleased with their response, even though I didn't agree with their approach.

Sorry this was so long, but I do hope it helps!

 

[Mommafirst]

I had this same question when I first came here. At our first clinic we were not told anything about doing airway clearance. I came here and read about it and really got uptight thinking my CF center was remiss and was I going to need to switch, etc. .... you get the point. So I called the center, I spoke with the CF nurse and asked her point blank. Her answer was that we absolutely could get started with CPT immediately and she set up an appointment with the PT to teach us how the following week.

Upon pushing further I learned that our center takes the philosophy that as long as the child isn't presenting any lung issues on diagnosis, that they give the parents one quarter (until the next clinic) to let everything sink in and absorb, before adding the CPT.

Whether this is the right approach or not is certainly debateable. But their feeling is that newly diagnosed parents are under soooo much stress, there is so much to cope with, so much new to add to your routine, that they add things like nebs and CPT slowly, so long as it is not going to do any harm to the child to go a few months without them.

I don't know how I feel about this approach, honestly. But I do know that if ALL of it was thrown at me at the original clinic that was already 3 hours long, I may have not made it home that day, LOL!!

We started CPT as soon as I pushed for it, they were happy to oblige. We started albuterol nebbed (and then switched to inhaler which is soooo much easier) the first time she developed a cold with a cough. Now they are part of our routine, and we will be adding pulmozyme to our routine too.

If the slow integration bothers you, call your CF center. I'm guessing they are doing it for your benefit and if you aren't comfortable with it push. If they don't respond in a way you like, then consider switching doctors. That was my take. I was pleased with their response, even though I didn't agree with their approach.

Sorry this was so long, but I do hope it helps!

 

[Mommafirst]

I had this same question when I first came here. At our first clinic we were not told anything about doing airway clearance. I came here and read about it and really got uptight thinking my CF center was remiss and was I going to need to switch, etc. .... you get the point. So I called the center, I spoke with the CF nurse and asked her point blank. Her answer was that we absolutely could get started with CPT immediately and she set up an appointment with the PT to teach us how the following week.

Upon pushing further I learned that our center takes the philosophy that as long as the child isn't presenting any lung issues on diagnosis, that they give the parents one quarter (until the next clinic) to let everything sink in and absorb, before adding the CPT.

Whether this is the right approach or not is certainly debateable. But their feeling is that newly diagnosed parents are under soooo much stress, there is so much to cope with, so much new to add to your routine, that they add things like nebs and CPT slowly, so long as it is not going to do any harm to the child to go a few months without them.

I don't know how I feel about this approach, honestly. But I do know that if ALL of it was thrown at me at the original clinic that was already 3 hours long, I may have not made it home that day, LOL!!

We started CPT as soon as I pushed for it, they were happy to oblige. We started albuterol nebbed (and then switched to inhaler which is soooo much easier) the first time she developed a cold with a cough. Now they are part of our routine, and we will be adding pulmozyme to our routine too.

If the slow integration bothers you, call your CF center. I'm guessing they are doing it for your benefit and if you aren't comfortable with it push. If they don't respond in a way you like, then consider switching doctors. That was my take. I was pleased with their response, even though I didn't agree with their approach.

Sorry this was so long, but I do hope it helps!

 

[Mommafirst]

I had this same question when I first came here. At our first clinic we were not told anything about doing airway clearance. I came here and read about it and really got uptight thinking my CF center was remiss and was I going to need to switch, etc. .... you get the point. So I called the center, I spoke with the CF nurse and asked her point blank. Her answer was that we absolutely could get started with CPT immediately and she set up an appointment with the PT to teach us how the following week.

Upon pushing further I learned that our center takes the philosophy that as long as the child isn't presenting any lung issues on diagnosis, that they give the parents one quarter (until the next clinic) to let everything sink in and absorb, before adding the CPT.

Whether this is the right approach or not is certainly debateable. But their feeling is that newly diagnosed parents are under soooo much stress, there is so much to cope with, so much new to add to your routine, that they add things like nebs and CPT slowly, so long as it is not going to do any harm to the child to go a few months without them.

I don't know how I feel about this approach, honestly. But I do know that if ALL of it was thrown at me at the original clinic that was already 3 hours long, I may have not made it home that day, LOL!!

We started CPT as soon as I pushed for it, they were happy to oblige. We started albuterol nebbed (and then switched to inhaler which is soooo much easier) the first time she developed a cold with a cough. Now they are part of our routine, and we will be adding pulmozyme to our routine too.

If the slow integration bothers you, call your CF center. I'm guessing they are doing it for your benefit and if you aren't comfortable with it push. If they don't respond in a way you like, then consider switching doctors. That was my take. I was pleased with their response, even though I didn't agree with their approach.

Sorry this was so long, but I do hope it helps!

 

[Mommafirst]

I had this same question when I first came here. At our first clinic we were not told anything about doing airway clearance. I came here and read about it and really got uptight thinking my CF center was remiss and was I going to need to switch, etc. .... you get the point. So I called the center, I spoke with the CF nurse and asked her point blank. Her answer was that we absolutely could get started with CPT immediately and she set up an appointment with the PT to teach us how the following week.

Upon pushing further I learned that our center takes the philosophy that as long as the child isn't presenting any lung issues on diagnosis, that they give the parents one quarter (until the next clinic) to let everything sink in and absorb, before adding the CPT.

Whether this is the right approach or not is certainly debateable. But their feeling is that newly diagnosed parents are under soooo much stress, there is so much to cope with, so much new to add to your routine, that they add things like nebs and CPT slowly, so long as it is not going to do any harm to the child to go a few months without them.

I don't know how I feel about this approach, honestly. But I do know that if ALL of it was thrown at me at the original clinic that was already 3 hours long, I may have not made it home that day, LOL!!

We started CPT as soon as I pushed for it, they were happy to oblige. We started albuterol nebbed (and then switched to inhaler which is soooo much easier) the first time she developed a cold with a cough. Now they are part of our routine, and we will be adding pulmozyme to our routine too.

If the slow integration bothers you, call your CF center. I'm guessing they are doing it for your benefit and if you aren't comfortable with it push. If they don't respond in a way you like, then consider switching doctors. That was my take. I was pleased with their response, even though I didn't agree with their approach.

Sorry this was so long, but I do hope it helps!