Road to Independence

[zeeannie]

Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.

She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.

So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.

At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

 

[zeeannie]

Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.

She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.

So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.

At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

 

[zeeannie]

Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.

She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.

So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.

At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

 

[zeeannie]

Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.

She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.

So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.

At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

 

[zeeannie]

Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.
<br />
<br />She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.
<br />
<br />So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.
<br />
<br />At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

 

[TonyaH]

Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.

Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?

Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!

Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.

I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

 

[TonyaH]

Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.

Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?

Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!

Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.

I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

 

[TonyaH]

Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.

Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?

Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!

Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.

I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

 

[TonyaH]

Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.

Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?

Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!

Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.

I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

 

[TonyaH]

Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.
<br />
<br />Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?
<br />
<br />Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!
<br />
<br />Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.
<br />
<br />I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

 

[NYCLawGirl]

No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.

But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

 

[NYCLawGirl]

No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.

But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

 

[NYCLawGirl]

No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.

But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

 

[NYCLawGirl]

No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.

But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

 

[NYCLawGirl]

No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.
<br />
<br />But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

 

[JackieAnn]

I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.

One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.

Just a thought...

Best of luck!

 

[JackieAnn]

I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.

One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.

Just a thought...

Best of luck!

 

[JackieAnn]

I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.

One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.

Just a thought...

Best of luck!

 

[JackieAnn]

I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.

One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.

Just a thought...

Best of luck!

 

[JackieAnn]

I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.
<br />
<br />One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.
<br />
<br />Just a thought...
<br />
<br />Best of luck!