the vest

sweetwhite30 · Nov 13, 2006

<img src="i/expressions/face-icon-small-disgusted.gif" border="0">I am totally disgusted here with fighting with my 4 yr old who we have to battle day in and day out to use the vest system with him ,so we have went back to the good ole cpt but the doctors want us to have him back on the vest. Due to my psoratic rhematoid arthritis in a flare up right now thats not going to happen because i am very weak and just got out of the hospital after 39 hrs of not being able to move. They tried to make me feel bad for not giving the vest but im just to weak right now and will be weak for weeks to come and my husband is stuck doing it all right now but i give him his am aerosols and yes i feel bad and i been crying over this today because i feel so helpless to my son right now and thats just not a good feeling. My husband gives him chest pt but can not successfully get him on the vest.The 4 yr old tears it off and refuses to use it says the vest hurts him, we have called the people out here and they say it is the proper vest and we are using it properly,they say he just doesnt like the tightness of the vest? So what do you do when this is the case and you see the cpt is not enough no matter how many times you do it? He is defiantly opposeing the vest system ? any suggestions?

sweetwhite30 · Nov 13, 2006

<img src="i/expressions/face-icon-small-disgusted.gif" border="0">I am totally disgusted here with fighting with my 4 yr old who we have to battle day in and day out to use the vest system with him ,so we have went back to the good ole cpt but the doctors want us to have him back on the vest. Due to my psoratic rhematoid arthritis in a flare up right now thats not going to happen because i am very weak and just got out of the hospital after 39 hrs of not being able to move. They tried to make me feel bad for not giving the vest but im just to weak right now and will be weak for weeks to come and my husband is stuck doing it all right now but i give him his am aerosols and yes i feel bad and i been crying over this today because i feel so helpless to my son right now and thats just not a good feeling. My husband gives him chest pt but can not successfully get him on the vest.The 4 yr old tears it off and refuses to use it says the vest hurts him, we have called the people out here and they say it is the proper vest and we are using it properly,they say he just doesnt like the tightness of the vest? So what do you do when this is the case and you see the cpt is not enough no matter how many times you do it? He is defiantly opposeing the vest system ? any suggestions?

sweetwhite30 · Nov 13, 2006

<img src="i/expressions/face-icon-small-disgusted.gif" border="0">I am totally disgusted here with fighting with my 4 yr old who we have to battle day in and day out to use the vest system with him ,so we have went back to the good ole cpt but the doctors want us to have him back on the vest. Due to my psoratic rhematoid arthritis in a flare up right now thats not going to happen because i am very weak and just got out of the hospital after 39 hrs of not being able to move. They tried to make me feel bad for not giving the vest but im just to weak right now and will be weak for weeks to come and my husband is stuck doing it all right now but i give him his am aerosols and yes i feel bad and i been crying over this today because i feel so helpless to my son right now and thats just not a good feeling. My husband gives him chest pt but can not successfully get him on the vest.The 4 yr old tears it off and refuses to use it says the vest hurts him, we have called the people out here and they say it is the proper vest and we are using it properly,they say he just doesnt like the tightness of the vest? So what do you do when this is the case and you see the cpt is not enough no matter how many times you do it? He is defiantly opposeing the vest system ? any suggestions?

debs2girls · Nov 13, 2006

I am so sorry you are having so many problems...I can understand your frustrations. My daughter is the same way. She fights me on the vest and manual. I just dont know what to do either. Dont let them make you feel guilty, they dont understand what it is like.
She also fights me on taking her meds. I tell her time and time again, if you will cooperate with the cpt, then it will probably cut down on the amount of time you have to be on antibiotics and steroids. But it doesnt do any good.
I just dont have any more fight in me. I did literaly sit on her..well more like trap her between my legs to give her her breathing treatments, but I think she is getting old enough to take some responsibility of her health.
If you come up with some solution, I would be happy to hear about it.

debs2girls · Nov 13, 2006

I am so sorry you are having so many problems...I can understand your frustrations. My daughter is the same way. She fights me on the vest and manual. I just dont know what to do either. Dont let them make you feel guilty, they dont understand what it is like.
She also fights me on taking her meds. I tell her time and time again, if you will cooperate with the cpt, then it will probably cut down on the amount of time you have to be on antibiotics and steroids. But it doesnt do any good.
I just dont have any more fight in me. I did literaly sit on her..well more like trap her between my legs to give her her breathing treatments, but I think she is getting old enough to take some responsibility of her health.
If you come up with some solution, I would be happy to hear about it.

debs2girls · Nov 13, 2006

I am so sorry you are having so many problems...I can understand your frustrations. My daughter is the same way. She fights me on the vest and manual. I just dont know what to do either. Dont let them make you feel guilty, they dont understand what it is like.
She also fights me on taking her meds. I tell her time and time again, if you will cooperate with the cpt, then it will probably cut down on the amount of time you have to be on antibiotics and steroids. But it doesnt do any good.
I just dont have any more fight in me. I did literaly sit on her..well more like trap her between my legs to give her her breathing treatments, but I think she is getting old enough to take some responsibility of her health.
If you come up with some solution, I would be happy to hear about it.

tammykrumrey · Nov 13, 2006

We have had these challenges over the years with my daughters. Some of the things that we have tried in the past...

*picking out a special movie to watch while doing the vest
*reading a book of his choice
*playing with legos or lightbrights or something fun that they are only allowed to
play with while doing the vest
*we have even used bribery in the earlier years (they got bored with it, so had
to move on to something else after a while) For example...my girlfriend went
to the dollare store and bought a bunch of little gifts and wrapped them up and made a treasure box. At the end of their vest treatment, they got to choose a gift to unwrap. It could be a piece of candy or a small little toy, or stuff for their hair (for girls of course), etc. It worked great! And not expensive if you buy something for $1 that has several pieces that you can seperate and wrap. And like I said, they got bored with it, so you don't have to worry about it lasting until they are 16 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">

As they got older and they could comprehend an explanation as to why the treatments were so important it really helped. They now know what the consequences of not using it means, so it's not as bad...so don't worry it will get better. Unfortunately I have out of anger told them in the past that if they do not do their vest (sometimes I do it by hand if one is really fighting the vest or if we are spending the night someplace and I don't want to take the vest for a one night stay) that they will die earlier than others. Now, if one turns their machine off prematurely, the other daughter will yell at her sister and tell her that she is going to die if she does that...Uhmmm, not sure that was really a great thing for them to learn, but I want them to understand how important it is.

I am sorry to hear you are having such a tough time with it. One thing that I still do with my girls while they do their vest, even though they are a bit older, is sit with them while they are doing their treatment. Lately, (during the morning treatment) I have been reading some old stories to them that my mom used to read to my sister and I when we were little, even though both read very well, they just enjoy hearing me read to them. In the evening they get control of the television to watch either Nick at Nite or the Disney Channel while they are doing their treatments.

tammykrumrey · Nov 13, 2006

We have had these challenges over the years with my daughters. Some of the things that we have tried in the past...

*picking out a special movie to watch while doing the vest
*reading a book of his choice
*playing with legos or lightbrights or something fun that they are only allowed to
play with while doing the vest
*we have even used bribery in the earlier years (they got bored with it, so had
to move on to something else after a while) For example...my girlfriend went
to the dollare store and bought a bunch of little gifts and wrapped them up and made a treasure box. At the end of their vest treatment, they got to choose a gift to unwrap. It could be a piece of candy or a small little toy, or stuff for their hair (for girls of course), etc. It worked great! And not expensive if you buy something for $1 that has several pieces that you can seperate and wrap. And like I said, they got bored with it, so you don't have to worry about it lasting until they are 16 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">

As they got older and they could comprehend an explanation as to why the treatments were so important it really helped. They now know what the consequences of not using it means, so it's not as bad...so don't worry it will get better. Unfortunately I have out of anger told them in the past that if they do not do their vest (sometimes I do it by hand if one is really fighting the vest or if we are spending the night someplace and I don't want to take the vest for a one night stay) that they will die earlier than others. Now, if one turns their machine off prematurely, the other daughter will yell at her sister and tell her that she is going to die if she does that...Uhmmm, not sure that was really a great thing for them to learn, but I want them to understand how important it is.

I am sorry to hear you are having such a tough time with it. One thing that I still do with my girls while they do their vest, even though they are a bit older, is sit with them while they are doing their treatment. Lately, (during the morning treatment) I have been reading some old stories to them that my mom used to read to my sister and I when we were little, even though both read very well, they just enjoy hearing me read to them. In the evening they get control of the television to watch either Nick at Nite or the Disney Channel while they are doing their treatments.

tammykrumrey · Nov 13, 2006

We have had these challenges over the years with my daughters. Some of the things that we have tried in the past...

*picking out a special movie to watch while doing the vest
*reading a book of his choice
*playing with legos or lightbrights or something fun that they are only allowed to
play with while doing the vest
*we have even used bribery in the earlier years (they got bored with it, so had
to move on to something else after a while) For example...my girlfriend went
to the dollare store and bought a bunch of little gifts and wrapped them up and made a treasure box. At the end of their vest treatment, they got to choose a gift to unwrap. It could be a piece of candy or a small little toy, or stuff for their hair (for girls of course), etc. It worked great! And not expensive if you buy something for $1 that has several pieces that you can seperate and wrap. And like I said, they got bored with it, so you don't have to worry about it lasting until they are 16 years old<img src="i/expressions/face-icon-small-smile.gif" border="0">

As they got older and they could comprehend an explanation as to why the treatments were so important it really helped. They now know what the consequences of not using it means, so it's not as bad...so don't worry it will get better. Unfortunately I have out of anger told them in the past that if they do not do their vest (sometimes I do it by hand if one is really fighting the vest or if we are spending the night someplace and I don't want to take the vest for a one night stay) that they will die earlier than others. Now, if one turns their machine off prematurely, the other daughter will yell at her sister and tell her that she is going to die if she does that...Uhmmm, not sure that was really a great thing for them to learn, but I want them to understand how important it is.

I am sorry to hear you are having such a tough time with it. One thing that I still do with my girls while they do their vest, even though they are a bit older, is sit with them while they are doing their treatment. Lately, (during the morning treatment) I have been reading some old stories to them that my mom used to read to my sister and I when we were little, even though both read very well, they just enjoy hearing me read to them. In the evening they get control of the television to watch either Nick at Nite or the Disney Channel while they are doing their treatments.

debs2girls · Nov 13, 2006

Tammy, you have some good suggestions...most of which we have already tried.
Except this one....*<span class="FTHighlightFont">we have even used bribery in the earlier years (they got bored with it, so had
to move on to something else after a while) For example...my girlfriend went
to the dollare store and bought a bunch of little gifts and wrapped them up and made a treasure box. At the end of their vest treatment, they got to choose a gift to unwrap. It could be a piece of candy or a small little toy, or stuff for their hair (for girls of course), etc. It worked great! And not expensive if you buy something for $1 that has several pieces that you can seperate and wrap. And like I said, they got bored with it, so you don't have to worry about it lasting until they are 16 years old </span ft>
I did use that method for potting training my grandson that we are raising and it worked like a charm.
I think I will try that...I too have said something about not living as long as others...I know I shouldnt have out of anger but explained it a little better, I just dont really think, at 6, she should know everything about C/F.

debs2girls · Nov 13, 2006

Tammy, you have some good suggestions...most of which we have already tried.
Except this one....*<span class="FTHighlightFont">we have even used bribery in the earlier years (they got bored with it, so had
to move on to something else after a while) For example...my girlfriend went
to the dollare store and bought a bunch of little gifts and wrapped them up and made a treasure box. At the end of their vest treatment, they got to choose a gift to unwrap. It could be a piece of candy or a small little toy, or stuff for their hair (for girls of course), etc. It worked great! And not expensive if you buy something for $1 that has several pieces that you can seperate and wrap. And like I said, they got bored with it, so you don't have to worry about it lasting until they are 16 years old </span ft>
I did use that method for potting training my grandson that we are raising and it worked like a charm.
I think I will try that...I too have said something about not living as long as others...I know I shouldnt have out of anger but explained it a little better, I just dont really think, at 6, she should know everything about C/F.

debs2girls · Nov 13, 2006

Tammy, you have some good suggestions...most of which we have already tried.
Except this one....*<span class="FTHighlightFont">we have even used bribery in the earlier years (they got bored with it, so had
to move on to something else after a while) For example...my girlfriend went
to the dollare store and bought a bunch of little gifts and wrapped them up and made a treasure box. At the end of their vest treatment, they got to choose a gift to unwrap. It could be a piece of candy or a small little toy, or stuff for their hair (for girls of course), etc. It worked great! And not expensive if you buy something for $1 that has several pieces that you can seperate and wrap. And like I said, they got bored with it, so you don't have to worry about it lasting until they are 16 years old </span ft>
I did use that method for potting training my grandson that we are raising and it worked like a charm.
I think I will try that...I too have said something about not living as long as others...I know I shouldnt have out of anger but explained it a little better, I just dont really think, at 6, she should know everything about C/F.

anonymous · Nov 13, 2006

take away something the little guy likes if he doesn't do the vest. video game? toy?

or, create a "reward board." Set up a chart and have every day on it for a week. or two weeks. whatever you chose. put a sticker next to each day he does the vest. if, at the end of the week, all days have stickers, he gets a prize (special treat like a toy, game, ice cream, etc).

two ways to approach it....both can be very effective.

anonymous · Nov 13, 2006

take away something the little guy likes if he doesn't do the vest. video game? toy?

or, create a "reward board." Set up a chart and have every day on it for a week. or two weeks. whatever you chose. put a sticker next to each day he does the vest. if, at the end of the week, all days have stickers, he gets a prize (special treat like a toy, game, ice cream, etc).

two ways to approach it....both can be very effective.

anonymous · Nov 13, 2006

take away something the little guy likes if he doesn't do the vest. video game? toy?

or, create a "reward board." Set up a chart and have every day on it for a week. or two weeks. whatever you chose. put a sticker next to each day he does the vest. if, at the end of the week, all days have stickers, he gets a prize (special treat like a toy, game, ice cream, etc).

two ways to approach it....both can be very effective.

tammykrumrey · Nov 13, 2006

Debbie, I am not sure if Cheyenne is closer to being 7, or a newly 6 year old. But soon you may be able to have her start being more active in her clinic appt. With my girls I started about the age of 6 and 7, in which I had them start answering the questions at clinic. I taught them to what to look for in their poops (although my 7 year old -only turned 7 in Sept- will still call me in and have me check her poops out and ask if they are ok or not). And I have told them that they are at school now and that I cannot always be there to know what is going on, so they need to kind of remember if they get tummy aches during the day, did they poop at school, do they cough while playing at recess or in gym, etc.
This all came about after both girls were in school full time and I realized while answering some of the questions at clinic that I didn't know how many times a day they poop, or cough, or whatever because I am not with them from 8 am to 3:30 pm.

So now, at appts, when Dr. Fekol asks, "how many times a day do you do this..."
they answer themselves. It has really helped them become more responsible in their care, even at such a young age. They may seem too young, but they have not had any problems with it. The only time they have a problem answering a question is when they know they aren't doing it as they are told to. For example, my older one stopped taking her enzymes. We tried everything under the sun! But at her appt last week, Dr. Ferkol, in a very gentle-but stern-way, explained to her what she was doing to her body and that it was so very important for her to take them. Guess what---no problems taking them this week, and she even gained a pound in this one weeks time!

Now their relationship has grown with their CF doctor and they trust him and the nurses and understand that there are certain things mom has control of and certain things they need to take control of. I am there to make sure it ultimately gets done, but it has truely helped them out. I simply explained to our CF team at one of our appts last year that the girls were going to start answering more of the questions, and it has worked great!

tammykrumrey · Nov 13, 2006

Debbie, I am not sure if Cheyenne is closer to being 7, or a newly 6 year old. But soon you may be able to have her start being more active in her clinic appt. With my girls I started about the age of 6 and 7, in which I had them start answering the questions at clinic. I taught them to what to look for in their poops (although my 7 year old -only turned 7 in Sept- will still call me in and have me check her poops out and ask if they are ok or not). And I have told them that they are at school now and that I cannot always be there to know what is going on, so they need to kind of remember if they get tummy aches during the day, did they poop at school, do they cough while playing at recess or in gym, etc.
This all came about after both girls were in school full time and I realized while answering some of the questions at clinic that I didn't know how many times a day they poop, or cough, or whatever because I am not with them from 8 am to 3:30 pm.

So now, at appts, when Dr. Fekol asks, "how many times a day do you do this..."
they answer themselves. It has really helped them become more responsible in their care, even at such a young age. They may seem too young, but they have not had any problems with it. The only time they have a problem answering a question is when they know they aren't doing it as they are told to. For example, my older one stopped taking her enzymes. We tried everything under the sun! But at her appt last week, Dr. Ferkol, in a very gentle-but stern-way, explained to her what she was doing to her body and that it was so very important for her to take them. Guess what---no problems taking them this week, and she even gained a pound in this one weeks time!

Now their relationship has grown with their CF doctor and they trust him and the nurses and understand that there are certain things mom has control of and certain things they need to take control of. I am there to make sure it ultimately gets done, but it has truely helped them out. I simply explained to our CF team at one of our appts last year that the girls were going to start answering more of the questions, and it has worked great!

tammykrumrey · Nov 13, 2006

Debbie, I am not sure if Cheyenne is closer to being 7, or a newly 6 year old. But soon you may be able to have her start being more active in her clinic appt. With my girls I started about the age of 6 and 7, in which I had them start answering the questions at clinic. I taught them to what to look for in their poops (although my 7 year old -only turned 7 in Sept- will still call me in and have me check her poops out and ask if they are ok or not). And I have told them that they are at school now and that I cannot always be there to know what is going on, so they need to kind of remember if they get tummy aches during the day, did they poop at school, do they cough while playing at recess or in gym, etc.
This all came about after both girls were in school full time and I realized while answering some of the questions at clinic that I didn't know how many times a day they poop, or cough, or whatever because I am not with them from 8 am to 3:30 pm.

So now, at appts, when Dr. Fekol asks, "how many times a day do you do this..."
they answer themselves. It has really helped them become more responsible in their care, even at such a young age. They may seem too young, but they have not had any problems with it. The only time they have a problem answering a question is when they know they aren't doing it as they are told to. For example, my older one stopped taking her enzymes. We tried everything under the sun! But at her appt last week, Dr. Ferkol, in a very gentle-but stern-way, explained to her what she was doing to her body and that it was so very important for her to take them. Guess what---no problems taking them this week, and she even gained a pound in this one weeks time!

Now their relationship has grown with their CF doctor and they trust him and the nurses and understand that there are certain things mom has control of and certain things they need to take control of. I am there to make sure it ultimately gets done, but it has truely helped them out. I simply explained to our CF team at one of our appts last year that the girls were going to start answering more of the questions, and it has worked great!

anonymous · Nov 13, 2006

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tammykrumrey</b></i>

they answer themselves. It has really helped them become more responsible in their care, even at such a young age. They may seem too young, but they have not had any problems with it. The only time they have a problem answering a question is when they know they aren't doing it as they are told to. For example, my older one stopped taking her enzymes. We tried everything under the sun! But at her appt last week, Dr. Ferkol, in a very gentle-but stern-way, explained to her what she was doing to her body and that it was so very important for her to take them. Guess what---no problems taking them this week, and she even gained a pound in this one weeks time!

Now their relationship has grown with their CF doctor and they trust him and the nurses and understand that there are certain things mom has control of and certain things they need to take control of. I am there to make sure it ultimately gets done, but it has truely helped them out. I simply explained to our CF team at one of our appts last year that the girls were going to start answering more of the questions, and it has worked great!</end quote></div>

what a great mom you are! having kids be accountable to someone other than their parents is fantastic!

anonymous · Nov 13, 2006

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tammykrumrey</b></i>

they answer themselves. It has really helped them become more responsible in their care, even at such a young age. They may seem too young, but they have not had any problems with it. The only time they have a problem answering a question is when they know they aren't doing it as they are told to. For example, my older one stopped taking her enzymes. We tried everything under the sun! But at her appt last week, Dr. Ferkol, in a very gentle-but stern-way, explained to her what she was doing to her body and that it was so very important for her to take them. Guess what---no problems taking them this week, and she even gained a pound in this one weeks time!

Now their relationship has grown with their CF doctor and they trust him and the nurses and understand that there are certain things mom has control of and certain things they need to take control of. I am there to make sure it ultimately gets done, but it has truely helped them out. I simply explained to our CF team at one of our appts last year that the girls were going to start answering more of the questions, and it has worked great!</end quote></div>

what a great mom you are! having kids be accountable to someone other than their parents is fantastic!

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