Self-Responsibility

[Mommafirst]

I'm wondering if any of you have a good timeline for when a CF patient should become completely responsible for their own care, and the ways to transition them?

I know Alyssa is only 4 and a half, but I'm already working with her to encourage her to start her treatments on her own, even so much as I have a star chart and she earns a star for many reasons, but if she is the first one to say it is time for her vest, I give her one. I'm so proud of her, it is going really well, and we haven't had any treatment fights in many weeks now.

She's also starting to realize that she will get praise for taking her pills out and lining them up, or taking them, without any prodding.

I think, for now, this is enough responsibility as long as it is supervised by me. But I'd like to keep adding additional things over time. I really want her to have a full appreciation and responsibility for all her care eventually -- I just don't really know how much and by what age.

 

[Mommafirst]

I'm wondering if any of you have a good timeline for when a CF patient should become completely responsible for their own care, and the ways to transition them?

I know Alyssa is only 4 and a half, but I'm already working with her to encourage her to start her treatments on her own, even so much as I have a star chart and she earns a star for many reasons, but if she is the first one to say it is time for her vest, I give her one. I'm so proud of her, it is going really well, and we haven't had any treatment fights in many weeks now.

She's also starting to realize that she will get praise for taking her pills out and lining them up, or taking them, without any prodding.

I think, for now, this is enough responsibility as long as it is supervised by me. But I'd like to keep adding additional things over time. I really want her to have a full appreciation and responsibility for all her care eventually -- I just don't really know how much and by what age.

 

[Mommafirst]

I'm wondering if any of you have a good timeline for when a CF patient should become completely responsible for their own care, and the ways to transition them?
<br />
<br />I know Alyssa is only 4 and a half, but I'm already working with her to encourage her to start her treatments on her own, even so much as I have a star chart and she earns a star for many reasons, but if she is the first one to say it is time for her vest, I give her one. I'm so proud of her, it is going really well, and we haven't had any treatment fights in many weeks now.
<br />
<br />She's also starting to realize that she will get praise for taking her pills out and lining them up, or taking them, without any prodding.
<br />
<br />I think, for now, this is enough responsibility as long as it is supervised by me. But I'd like to keep adding additional things over time. I really want her to have a full appreciation and responsibility for all her care eventually -- I just don't really know how much and by what age.

 

[Rebjane]

I need to be working on this as well. I think maggie going to kindergarten was a big push to get her more independent with her enzymes. Maggie has over time been able to become independent doing her enzymes. She occasionally needs a verbal reminder to take them before dinner, but if she is at a friends house, I usually give Maggie a bottle of enzymes and say you know what to do. I tell the parent to just trust Maggie, about for what food needs enzymes and what doesn't and how many. Usually Maggie is right on target with that.


Nebulizers is a different story...she would procrastinate if I wasn't setting them up; UNLESS there was something so special she wanted to do; then she wants to do her nebs right away...Which I get. Now that Maggie can read; i made her a list of her nebs and explained the order etc; which she really liked but it is so much faster if I do it. However , Once camp is over I think summer would be a good time to revisit her doing her own nebs...My son, also wants to learn since he's almost 12 he can help... So it's a process; but my guess is Alyssa knows alot already....

REbecca

 

[Rebjane]

I need to be working on this as well. I think maggie going to kindergarten was a big push to get her more independent with her enzymes. Maggie has over time been able to become independent doing her enzymes. She occasionally needs a verbal reminder to take them before dinner, but if she is at a friends house, I usually give Maggie a bottle of enzymes and say you know what to do. I tell the parent to just trust Maggie, about for what food needs enzymes and what doesn't and how many. Usually Maggie is right on target with that.


Nebulizers is a different story...she would procrastinate if I wasn't setting them up; UNLESS there was something so special she wanted to do; then she wants to do her nebs right away...Which I get. Now that Maggie can read; i made her a list of her nebs and explained the order etc; which she really liked but it is so much faster if I do it. However , Once camp is over I think summer would be a good time to revisit her doing her own nebs...My son, also wants to learn since he's almost 12 he can help... So it's a process; but my guess is Alyssa knows alot already....

REbecca

 

[Rebjane]

I need to be working on this as well. I think maggie going to kindergarten was a big push to get her more independent with her enzymes. Maggie has over time been able to become independent doing her enzymes. She occasionally needs a verbal reminder to take them before dinner, but if she is at a friends house, I usually give Maggie a bottle of enzymes and say you know what to do. I tell the parent to just trust Maggie, about for what food needs enzymes and what doesn't and how many. Usually Maggie is right on target with that.
<br />
<br />
<br />Nebulizers is a different story...she would procrastinate if I wasn't setting them up; UNLESS there was something so special she wanted to do; then she wants to do her nebs right away...Which I get. Now that Maggie can read; i made her a list of her nebs and explained the order etc; which she really liked but it is so much faster if I do it. However , Once camp is over I think summer would be a good time to revisit her doing her own nebs...My son, also wants to learn since he's almost 12 he can help... So it's a process; but my guess is Alyssa knows alot already....
<br />
<br />REbecca

 

[Rebjane]

Oh, Maggie is 7 1/2 going into the second grade but I would say she became independent with enzymes in first grade.

 

[Rebjane]

Oh, Maggie is 7 1/2 going into the second grade but I would say she became independent with enzymes in first grade.

 

[Rebjane]

Oh, Maggie is 7 1/2 going into the second grade but I would say she became independent with enzymes in first grade.

 

[Ratatosk]

We try to work with DS, whose 7 and going into 1st grade. I've sent him to birthday parties with enzymes and tends to do okay. And he's usually pretty good about reminding people at school or daycare if they forget enzymes and knows that he doesn't have to take them with fruit, juice, popscicles... He just gets distracted and at this point cannot be trusted to remember on his own.

He tends to have problems hooking/unhooking the tubes into the vest but can buckle and unbuckle. He knows all the names of his medications septra, zithromax, tobi, albuterol, pulmozyme, actigall, vitamin k... Though dicloxicillan is called "bluey" since it's a tongue twister and fairly new.

We've also reminded him prior and during doctors appointments to state any concerns or ask questions.

 

[Ratatosk]

We try to work with DS, whose 7 and going into 1st grade. I've sent him to birthday parties with enzymes and tends to do okay. And he's usually pretty good about reminding people at school or daycare if they forget enzymes and knows that he doesn't have to take them with fruit, juice, popscicles... He just gets distracted and at this point cannot be trusted to remember on his own.

He tends to have problems hooking/unhooking the tubes into the vest but can buckle and unbuckle. He knows all the names of his medications septra, zithromax, tobi, albuterol, pulmozyme, actigall, vitamin k... Though dicloxicillan is called "bluey" since it's a tongue twister and fairly new.

We've also reminded him prior and during doctors appointments to state any concerns or ask questions.

 

[Ratatosk]

We try to work with DS, whose 7 and going into 1st grade. I've sent him to birthday parties with enzymes and tends to do okay. And he's usually pretty good about reminding people at school or daycare if they forget enzymes and knows that he doesn't have to take them with fruit, juice, popscicles... He just gets distracted and at this point cannot be trusted to remember on his own.
<br />
<br />He tends to have problems hooking/unhooking the tubes into the vest but can buckle and unbuckle. He knows all the names of his medications septra, zithromax, tobi, albuterol, pulmozyme, actigall, vitamin k... Though dicloxicillan is called "bluey" since it's a tongue twister and fairly new.
<br />
<br />We've also reminded him prior and during doctors appointments to state any concerns or ask questions.

 

[camperscove]

Ratatosk, I love the "bluey" med! Everything at our house is: Super Yucky White med, Kind of Yucky pink, orange puffer, blue puffer, etc, And amazingly, his team always knows exactly what he's talking about. Probably because every kid feels the same
In that recent US News & World Report spread on CF there was a pic of a 6 year olds star chart. I was amazed at how detailed it was and it really got me thinking about the level of responsibility we let our son have. We know he thrives off of responsibility and gets great satisfaction from his few chores, yet for some reason, we haven't asked him to take more responsibility with his own care routine. He is 100% faithful with enzymes, but I wonder, is it time for him to keep track of most everything else? He'll be 6 in November and starts kindergarten in the fall. Hmmm, I'd love to hear from more families about how involved/responsible and what age their kids are!

 

[camperscove]

Ratatosk, I love the "bluey" med! Everything at our house is: Super Yucky White med, Kind of Yucky pink, orange puffer, blue puffer, etc, And amazingly, his team always knows exactly what he's talking about. Probably because every kid feels the same
In that recent US News & World Report spread on CF there was a pic of a 6 year olds star chart. I was amazed at how detailed it was and it really got me thinking about the level of responsibility we let our son have. We know he thrives off of responsibility and gets great satisfaction from his few chores, yet for some reason, we haven't asked him to take more responsibility with his own care routine. He is 100% faithful with enzymes, but I wonder, is it time for him to keep track of most everything else? He'll be 6 in November and starts kindergarten in the fall. Hmmm, I'd love to hear from more families about how involved/responsible and what age their kids are!

 

[camperscove]

Ratatosk, I love the "bluey" med! Everything at our house is: Super Yucky White med, Kind of Yucky pink, orange puffer, blue puffer, etc, And amazingly, his team always knows exactly what he's talking about. Probably because every kid feels the same
<br />In that recent US News & World Report spread on CF there was a pic of a 6 year olds star chart. I was amazed at how detailed it was and it really got me thinking about the level of responsibility we let our son have. We know he thrives off of responsibility and gets great satisfaction from his few chores, yet for some reason, we haven't asked him to take more responsibility with his own care routine. He is 100% faithful with enzymes, but I wonder, is it time for him to keep track of most everything else? He'll be 6 in November and starts kindergarten in the fall. Hmmm, I'd love to hear from more families about how involved/responsible and what age their kids are!

 

[ktsmom]

Our daughter is 7 and going into second grade. She has had primary responsibility for enzymes (remembering, and how many) at school starting with Kindergarten. She has only forgotten a few times.

Since she can take all of her oral meds in pill form now, we use the week-long pill organizers. One for morning meds and one for evening meds. She can fill those up all by herself, even the Mon/Wed/Fri Azithromycin. We leave the containers on the dining room table and I open the appropriate compartment and leave it by her plate. We put breakfast and dinner enzymes in there as well. She knows what to take before eating, which ones to take after, and which ones to take right before bed.

She also loves to get her nebs set up, but I agree that it takes so much longer to let her do it! She NEVER volunteers that it is neb or vest time. <img src="i/expressions/face-icon-small-happy.gif" border="0"> But I think she would love the star chart - I will get that started.

Oh, and we still call Prevacid the "suck on" because she used to take the solutab dissolvable form before she could swallow pills.

 

[ktsmom]

Our daughter is 7 and going into second grade. She has had primary responsibility for enzymes (remembering, and how many) at school starting with Kindergarten. She has only forgotten a few times.

Since she can take all of her oral meds in pill form now, we use the week-long pill organizers. One for morning meds and one for evening meds. She can fill those up all by herself, even the Mon/Wed/Fri Azithromycin. We leave the containers on the dining room table and I open the appropriate compartment and leave it by her plate. We put breakfast and dinner enzymes in there as well. She knows what to take before eating, which ones to take after, and which ones to take right before bed.

She also loves to get her nebs set up, but I agree that it takes so much longer to let her do it! She NEVER volunteers that it is neb or vest time. <img src="i/expressions/face-icon-small-happy.gif" border="0"> But I think she would love the star chart - I will get that started.

Oh, and we still call Prevacid the "suck on" because she used to take the solutab dissolvable form before she could swallow pills.

 

[ktsmom]

Our daughter is 7 and going into second grade. She has had primary responsibility for enzymes (remembering, and how many) at school starting with Kindergarten. She has only forgotten a few times.
<br />
<br />Since she can take all of her oral meds in pill form now, we use the week-long pill organizers. One for morning meds and one for evening meds. She can fill those up all by herself, even the Mon/Wed/Fri Azithromycin. We leave the containers on the dining room table and I open the appropriate compartment and leave it by her plate. We put breakfast and dinner enzymes in there as well. She knows what to take before eating, which ones to take after, and which ones to take right before bed.
<br />
<br />She also loves to get her nebs set up, but I agree that it takes so much longer to let her do it! She NEVER volunteers that it is neb or vest time. <img src="i/expressions/face-icon-small-happy.gif" border="0"> But I think she would love the star chart - I will get that started.
<br />
<br />Oh, and we still call Prevacid the "suck on" because she used to take the solutab dissolvable form before she could swallow pills.

 

[Rebjane]

For some reason Maggie has always called liquid antibiotics "goo-goo gummy". It's wierd I know, just what she started saying as a baby and we still refer to it that way. The worst goo goo gummy is the white one Zyvox, that is the" white yucky goo goo gummy".

Rebecca

 

[Rebjane]

For some reason Maggie has always called liquid antibiotics "goo-goo gummy". It's wierd I know, just what she started saying as a baby and we still refer to it that way. The worst goo goo gummy is the white one Zyvox, that is the" white yucky goo goo gummy".

Rebecca