10 Year old not wanting to do treatments

Stacia · Mar 5, 2009

I am really getting frustrated with Stacia. She is not taking her pills, short cutting her vest treatments. I really don't know what to do. I hate getting mad at her but have tried everything and kind find anything that sinks in to her.

I think the hard thing is she was just diagnosed a year ago in August, so she hasn't grown up with this. Plus I think she looks at her friends and sees they don't have to do this stuff, and last I think the biggest thing is she doesn't have any lung problems, so I believe she thinks she doesn't need to do this stuff.

I am just looking for advice from anyone how to deal with this, especially from those that have been through this. But I will take advice frome anyone.

I am sure she thinks mom doesn't know anything. I just wish that she could talk to others like her. We know nobody with CF.

Stacia · Mar 5, 2009

I am really getting frustrated with Stacia. She is not taking her pills, short cutting her vest treatments. I really don't know what to do. I hate getting mad at her but have tried everything and kind find anything that sinks in to her.

I think the hard thing is she was just diagnosed a year ago in August, so she hasn't grown up with this. Plus I think she looks at her friends and sees they don't have to do this stuff, and last I think the biggest thing is she doesn't have any lung problems, so I believe she thinks she doesn't need to do this stuff.

I am just looking for advice from anyone how to deal with this, especially from those that have been through this. But I will take advice frome anyone.

I am sure she thinks mom doesn't know anything. I just wish that she could talk to others like her. We know nobody with CF.

Stacia · Mar 5, 2009

I am really getting frustrated with Stacia. She is not taking her pills, short cutting her vest treatments. I really don't know what to do. I hate getting mad at her but have tried everything and kind find anything that sinks in to her.

I think the hard thing is she was just diagnosed a year ago in August, so she hasn't grown up with this. Plus I think she looks at her friends and sees they don't have to do this stuff, and last I think the biggest thing is she doesn't have any lung problems, so I believe she thinks she doesn't need to do this stuff.

I am just looking for advice from anyone how to deal with this, especially from those that have been through this. But I will take advice frome anyone.

I am sure she thinks mom doesn't know anything. I just wish that she could talk to others like her. We know nobody with CF.

Stacia · Mar 5, 2009

I am really getting frustrated with Stacia. She is not taking her pills, short cutting her vest treatments. I really don't know what to do. I hate getting mad at her but have tried everything and kind find anything that sinks in to her.

I think the hard thing is she was just diagnosed a year ago in August, so she hasn't grown up with this. Plus I think she looks at her friends and sees they don't have to do this stuff, and last I think the biggest thing is she doesn't have any lung problems, so I believe she thinks she doesn't need to do this stuff.

I am just looking for advice from anyone how to deal with this, especially from those that have been through this. But I will take advice frome anyone.

I am sure she thinks mom doesn't know anything. I just wish that she could talk to others like her. We know nobody with CF.

Stacia · Mar 5, 2009

I am really getting frustrated with Stacia. She is not taking her pills, short cutting her vest treatments. I really don't know what to do. I hate getting mad at her but have tried everything and kind find anything that sinks in to her.
 
 I think the hard thing is she was just diagnosed a year ago in August, so she hasn't grown up with this. Plus I think she looks at her friends and sees they don't have to do this stuff, and last I think the biggest thing is she doesn't have any lung problems, so I believe she thinks she doesn't need to do this stuff.
 
 I am just looking for advice from anyone how to deal with this, especially from those that have been through this. But I will take advice frome anyone.
 
 I am sure she thinks mom doesn't know anything. I just wish that she could talk to others like her. We know nobody with CF.

ConnorsMom · Mar 5, 2009

It could be an age thing. We have the same trouble intermittently with Connor, strating when he was 11 or so. It culminated with his first ever tune-up last summer and we were able to prove to him the importance of the pills and proper vest/breathing. For a while I made Connor take pills in front of me, so I could see he didn't miss any, particularly the antibiotics, prevacid, and zyrtec and vitamins, the enzymes I left to him, because as the Pulmonologist pointed out to us all, CFer's don't generally die from not taking them. So, once he's been closely monitored for a while, I give him some freedom and see how he does. It's off and on, like he goes thru phases. I just found a stash of vitamins, prevacid and Singular this morning, so I'll have to revert to watching him again- it's been a while.
I think you hit on it when you pointed out you are just Mom, you don't know anything, all kids get this attitude, CF or not...my daughter (non CF) started with that at age 8! I'm not sure growing up with CF has much to do with it, it's more an age thing...rebellion so to speak. Connor was diagnosed at 8 weeks, but CF was truely a back burner issue until we moved to VA a few yrs ago. Different care providers have different theories and ways of treating, so we've been more agressive here. He's told me he hates that CF takes so much of his time, he wants and needs to be a kid.
I wish there was a majic answer to your issues with Stacia, we've had to continually change how we deal with Connor. The trip to the hospital last summer helped a little- probably would have helped more if he hadn't had so much fun in there with all the toys, games, video games etc. But at least it proved that Mom and Dad were right, you have to do the treatments correctly. Luckily, Connor has not suffered any permanent lung damage (no scarring yet), but it took him more than a year to regain his good PFT's. Lesson learned? We shall see.
If Stacia would like to try emailing with Connor (he's 12 and in 6th grade) she can send a message to my personal email account. Connor has one, but checks it rarely, this way I can let him know and he can respond. Connor would love to communicate with some kids like him as well, but he's not very regular with email yet. paja93@cox.net
Keep your chin up...

ConnorsMom · Mar 5, 2009

It could be an age thing. We have the same trouble intermittently with Connor, strating when he was 11 or so. It culminated with his first ever tune-up last summer and we were able to prove to him the importance of the pills and proper vest/breathing. For a while I made Connor take pills in front of me, so I could see he didn't miss any, particularly the antibiotics, prevacid, and zyrtec and vitamins, the enzymes I left to him, because as the Pulmonologist pointed out to us all, CFer's don't generally die from not taking them. So, once he's been closely monitored for a while, I give him some freedom and see how he does. It's off and on, like he goes thru phases. I just found a stash of vitamins, prevacid and Singular this morning, so I'll have to revert to watching him again- it's been a while.
I think you hit on it when you pointed out you are just Mom, you don't know anything, all kids get this attitude, CF or not...my daughter (non CF) started with that at age 8! I'm not sure growing up with CF has much to do with it, it's more an age thing...rebellion so to speak. Connor was diagnosed at 8 weeks, but CF was truely a back burner issue until we moved to VA a few yrs ago. Different care providers have different theories and ways of treating, so we've been more agressive here. He's told me he hates that CF takes so much of his time, he wants and needs to be a kid.
I wish there was a majic answer to your issues with Stacia, we've had to continually change how we deal with Connor. The trip to the hospital last summer helped a little- probably would have helped more if he hadn't had so much fun in there with all the toys, games, video games etc. But at least it proved that Mom and Dad were right, you have to do the treatments correctly. Luckily, Connor has not suffered any permanent lung damage (no scarring yet), but it took him more than a year to regain his good PFT's. Lesson learned? We shall see.
If Stacia would like to try emailing with Connor (he's 12 and in 6th grade) she can send a message to my personal email account. Connor has one, but checks it rarely, this way I can let him know and he can respond. Connor would love to communicate with some kids like him as well, but he's not very regular with email yet. paja93@cox.net
Keep your chin up...

ConnorsMom · Mar 5, 2009

It could be an age thing. We have the same trouble intermittently with Connor, strating when he was 11 or so. It culminated with his first ever tune-up last summer and we were able to prove to him the importance of the pills and proper vest/breathing. For a while I made Connor take pills in front of me, so I could see he didn't miss any, particularly the antibiotics, prevacid, and zyrtec and vitamins, the enzymes I left to him, because as the Pulmonologist pointed out to us all, CFer's don't generally die from not taking them. So, once he's been closely monitored for a while, I give him some freedom and see how he does. It's off and on, like he goes thru phases. I just found a stash of vitamins, prevacid and Singular this morning, so I'll have to revert to watching him again- it's been a while.
I think you hit on it when you pointed out you are just Mom, you don't know anything, all kids get this attitude, CF or not...my daughter (non CF) started with that at age 8! I'm not sure growing up with CF has much to do with it, it's more an age thing...rebellion so to speak. Connor was diagnosed at 8 weeks, but CF was truely a back burner issue until we moved to VA a few yrs ago. Different care providers have different theories and ways of treating, so we've been more agressive here. He's told me he hates that CF takes so much of his time, he wants and needs to be a kid.
I wish there was a majic answer to your issues with Stacia, we've had to continually change how we deal with Connor. The trip to the hospital last summer helped a little- probably would have helped more if he hadn't had so much fun in there with all the toys, games, video games etc. But at least it proved that Mom and Dad were right, you have to do the treatments correctly. Luckily, Connor has not suffered any permanent lung damage (no scarring yet), but it took him more than a year to regain his good PFT's. Lesson learned? We shall see.
If Stacia would like to try emailing with Connor (he's 12 and in 6th grade) she can send a message to my personal email account. Connor has one, but checks it rarely, this way I can let him know and he can respond. Connor would love to communicate with some kids like him as well, but he's not very regular with email yet. paja93@cox.net
Keep your chin up...

ConnorsMom · Mar 5, 2009

It could be an age thing. We have the same trouble intermittently with Connor, strating when he was 11 or so. It culminated with his first ever tune-up last summer and we were able to prove to him the importance of the pills and proper vest/breathing. For a while I made Connor take pills in front of me, so I could see he didn't miss any, particularly the antibiotics, prevacid, and zyrtec and vitamins, the enzymes I left to him, because as the Pulmonologist pointed out to us all, CFer's don't generally die from not taking them. So, once he's been closely monitored for a while, I give him some freedom and see how he does. It's off and on, like he goes thru phases. I just found a stash of vitamins, prevacid and Singular this morning, so I'll have to revert to watching him again- it's been a while.
I think you hit on it when you pointed out you are just Mom, you don't know anything, all kids get this attitude, CF or not...my daughter (non CF) started with that at age 8! I'm not sure growing up with CF has much to do with it, it's more an age thing...rebellion so to speak. Connor was diagnosed at 8 weeks, but CF was truely a back burner issue until we moved to VA a few yrs ago. Different care providers have different theories and ways of treating, so we've been more agressive here. He's told me he hates that CF takes so much of his time, he wants and needs to be a kid.
I wish there was a majic answer to your issues with Stacia, we've had to continually change how we deal with Connor. The trip to the hospital last summer helped a little- probably would have helped more if he hadn't had so much fun in there with all the toys, games, video games etc. But at least it proved that Mom and Dad were right, you have to do the treatments correctly. Luckily, Connor has not suffered any permanent lung damage (no scarring yet), but it took him more than a year to regain his good PFT's. Lesson learned? We shall see.
If Stacia would like to try emailing with Connor (he's 12 and in 6th grade) she can send a message to my personal email account. Connor has one, but checks it rarely, this way I can let him know and he can respond. Connor would love to communicate with some kids like him as well, but he's not very regular with email yet. paja93@cox.net
Keep your chin up...

ConnorsMom · Mar 5, 2009

It could be an age thing. We have the same trouble intermittently with Connor, strating when he was 11 or so. It culminated with his first ever tune-up last summer and we were able to prove to him the importance of the pills and proper vest/breathing. For a while I made Connor take pills in front of me, so I could see he didn't miss any, particularly the antibiotics, prevacid, and zyrtec and vitamins, the enzymes I left to him, because as the Pulmonologist pointed out to us all, CFer's don't generally die from not taking them. So, once he's been closely monitored for a while, I give him some freedom and see how he does. It's off and on, like he goes thru phases. I just found a stash of vitamins, prevacid and Singular this morning, so I'll have to revert to watching him again- it's been a while.
 I think you hit on it when you pointed out you are just Mom, you don't know anything, all kids get this attitude, CF or not...my daughter (non CF) started with that at age 8! I'm not sure growing up with CF has much to do with it, it's more an age thing...rebellion so to speak. Connor was diagnosed at 8 weeks, but CF was truely a back burner issue until we moved to VA a few yrs ago. Different care providers have different theories and ways of treating, so we've been more agressive here. He's told me he hates that CF takes so much of his time, he wants and needs to be a kid.
 I wish there was a majic answer to your issues with Stacia, we've had to continually change how we deal with Connor. The trip to the hospital last summer helped a little- probably would have helped more if he hadn't had so much fun in there with all the toys, games, video games etc. But at least it proved that Mom and Dad were right, you have to do the treatments correctly. Luckily, Connor has not suffered any permanent lung damage (no scarring yet), but it took him more than a year to regain his good PFT's. Lesson learned? We shall see.
 If Stacia would like to try emailing with Connor (he's 12 and in 6th grade) she can send a message to my personal email account. Connor has one, but checks it rarely, this way I can let him know and he can respond. Connor would love to communicate with some kids like him as well, but he's not very regular with email yet. paja93@cox.net
 Keep your chin up...

Mommafirst · Mar 5, 2009

Hi Susan!

Does Stacia like to read? I just wrote a book review for the new CF newsletter on a pre-teen type book called Stevie's Secret. Its about a high school freshman with CF that is struggling with treatments fitting into her life and her love for dance. Its a good moral-to-the-story type thing. I know 10 isn't anywhere near a freshman in high school, but its a pretty universal story line, in fact I doubt that a real high school freshman would be interested in it -- too simplistic.

Anyway, Michelle Mizda gave it to me. I think maybe it will resonate with Stacia and you can read it together or seperately and discuss it. Call the clinic, and see if Michelle will send it your way. If not, I will send you my copy. Just PM me.

I think what Stacia is dealing with is a completely normal part of growing up with CF. I don't look forward to dealing with it with Alyssa, she already fights everything we do!!!!

Mommafirst · Mar 5, 2009

Hi Susan!

Does Stacia like to read? I just wrote a book review for the new CF newsletter on a pre-teen type book called Stevie's Secret. Its about a high school freshman with CF that is struggling with treatments fitting into her life and her love for dance. Its a good moral-to-the-story type thing. I know 10 isn't anywhere near a freshman in high school, but its a pretty universal story line, in fact I doubt that a real high school freshman would be interested in it -- too simplistic.

Anyway, Michelle Mizda gave it to me. I think maybe it will resonate with Stacia and you can read it together or seperately and discuss it. Call the clinic, and see if Michelle will send it your way. If not, I will send you my copy. Just PM me.

I think what Stacia is dealing with is a completely normal part of growing up with CF. I don't look forward to dealing with it with Alyssa, she already fights everything we do!!!!

Mommafirst · Mar 5, 2009

Hi Susan!

Does Stacia like to read? I just wrote a book review for the new CF newsletter on a pre-teen type book called Stevie's Secret. Its about a high school freshman with CF that is struggling with treatments fitting into her life and her love for dance. Its a good moral-to-the-story type thing. I know 10 isn't anywhere near a freshman in high school, but its a pretty universal story line, in fact I doubt that a real high school freshman would be interested in it -- too simplistic.

Anyway, Michelle Mizda gave it to me. I think maybe it will resonate with Stacia and you can read it together or seperately and discuss it. Call the clinic, and see if Michelle will send it your way. If not, I will send you my copy. Just PM me.

I think what Stacia is dealing with is a completely normal part of growing up with CF. I don't look forward to dealing with it with Alyssa, she already fights everything we do!!!!

Mommafirst · Mar 5, 2009

Hi Susan!

Does Stacia like to read? I just wrote a book review for the new CF newsletter on a pre-teen type book called Stevie's Secret. Its about a high school freshman with CF that is struggling with treatments fitting into her life and her love for dance. Its a good moral-to-the-story type thing. I know 10 isn't anywhere near a freshman in high school, but its a pretty universal story line, in fact I doubt that a real high school freshman would be interested in it -- too simplistic.

Anyway, Michelle Mizda gave it to me. I think maybe it will resonate with Stacia and you can read it together or seperately and discuss it. Call the clinic, and see if Michelle will send it your way. If not, I will send you my copy. Just PM me.

I think what Stacia is dealing with is a completely normal part of growing up with CF. I don't look forward to dealing with it with Alyssa, she already fights everything we do!!!!

Mommafirst · Mar 5, 2009

Hi Susan!
 
 Does Stacia like to read? I just wrote a book review for the new CF newsletter on a pre-teen type book called Stevie's Secret. Its about a high school freshman with CF that is struggling with treatments fitting into her life and her love for dance. Its a good moral-to-the-story type thing. I know 10 isn't anywhere near a freshman in high school, but its a pretty universal story line, in fact I doubt that a real high school freshman would be interested in it -- too simplistic.
 
 Anyway, Michelle Mizda gave it to me. I think maybe it will resonate with Stacia and you can read it together or seperately and discuss it. Call the clinic, and see if Michelle will send it your way. If not, I will send you my copy. Just PM me.
 
 I think what Stacia is dealing with is a completely normal part of growing up with CF. I don't look forward to dealing with it with Alyssa, she already fights everything we do!!!!

holmfamily1992 · Mar 5, 2009

Oh my, we are still dealing with it with our 10 year old. He was diagnosed one year ago in April. We would also get mad at take privlages away, try talking with him, and the list goes on,,,what somewhat worked for Dylan is I talked to His Doctor right in front of him about his attitude. His Doctor put it into terms he could understand and we are seeing an improvement.

He didn't grow up with this either and now that the meds are working he is feeling fine and not understanding the importance of his meds. He also had a feeding tube in place in October because he can't gain weight on his own. Kids don't get that its perventitive measurres. I have 8 children and 4 of them were diagnosed around the same time. Dylan in April and the other 3 in August. They all are going through the same thing. My older girls are tough. We have to physically get the neb treatments, hand their vest to them, just to make sure they do it.

Another thing that has changed Dylan's mind is that is older sister is really sick right now and he see's her struggle. He also doesn't understand that his world could change tomorrow. Maybe go on YouTube and find some CF videos and show her some of the other struggles people with CF are going through. I'm not saying thats what would happen to her but its possible. Kind of a scare tatic if you will....

This disease is so hard for kids and families. Trust me, we are there with you.

(((hugs)))
Tina

holmfamily1992 · Mar 5, 2009

Oh my, we are still dealing with it with our 10 year old. He was diagnosed one year ago in April. We would also get mad at take privlages away, try talking with him, and the list goes on,,,what somewhat worked for Dylan is I talked to His Doctor right in front of him about his attitude. His Doctor put it into terms he could understand and we are seeing an improvement.

He didn't grow up with this either and now that the meds are working he is feeling fine and not understanding the importance of his meds. He also had a feeding tube in place in October because he can't gain weight on his own. Kids don't get that its perventitive measurres. I have 8 children and 4 of them were diagnosed around the same time. Dylan in April and the other 3 in August. They all are going through the same thing. My older girls are tough. We have to physically get the neb treatments, hand their vest to them, just to make sure they do it.

Another thing that has changed Dylan's mind is that is older sister is really sick right now and he see's her struggle. He also doesn't understand that his world could change tomorrow. Maybe go on YouTube and find some CF videos and show her some of the other struggles people with CF are going through. I'm not saying thats what would happen to her but its possible. Kind of a scare tatic if you will....

This disease is so hard for kids and families. Trust me, we are there with you.

(((hugs)))
Tina

holmfamily1992 · Mar 5, 2009

Oh my, we are still dealing with it with our 10 year old. He was diagnosed one year ago in April. We would also get mad at take privlages away, try talking with him, and the list goes on,,,what somewhat worked for Dylan is I talked to His Doctor right in front of him about his attitude. His Doctor put it into terms he could understand and we are seeing an improvement.

He didn't grow up with this either and now that the meds are working he is feeling fine and not understanding the importance of his meds. He also had a feeding tube in place in October because he can't gain weight on his own. Kids don't get that its perventitive measurres. I have 8 children and 4 of them were diagnosed around the same time. Dylan in April and the other 3 in August. They all are going through the same thing. My older girls are tough. We have to physically get the neb treatments, hand their vest to them, just to make sure they do it.

Another thing that has changed Dylan's mind is that is older sister is really sick right now and he see's her struggle. He also doesn't understand that his world could change tomorrow. Maybe go on YouTube and find some CF videos and show her some of the other struggles people with CF are going through. I'm not saying thats what would happen to her but its possible. Kind of a scare tatic if you will....

This disease is so hard for kids and families. Trust me, we are there with you.

(((hugs)))
Tina

holmfamily1992 · Mar 5, 2009

Oh my, we are still dealing with it with our 10 year old. He was diagnosed one year ago in April. We would also get mad at take privlages away, try talking with him, and the list goes on,,,what somewhat worked for Dylan is I talked to His Doctor right in front of him about his attitude. His Doctor put it into terms he could understand and we are seeing an improvement.

He didn't grow up with this either and now that the meds are working he is feeling fine and not understanding the importance of his meds. He also had a feeding tube in place in October because he can't gain weight on his own. Kids don't get that its perventitive measurres. I have 8 children and 4 of them were diagnosed around the same time. Dylan in April and the other 3 in August. They all are going through the same thing. My older girls are tough. We have to physically get the neb treatments, hand their vest to them, just to make sure they do it.

Another thing that has changed Dylan's mind is that is older sister is really sick right now and he see's her struggle. He also doesn't understand that his world could change tomorrow. Maybe go on YouTube and find some CF videos and show her some of the other struggles people with CF are going through. I'm not saying thats what would happen to her but its possible. Kind of a scare tatic if you will....

This disease is so hard for kids and families. Trust me, we are there with you.

(((hugs)))
Tina

holmfamily1992 · Mar 5, 2009

Oh my, we are still dealing with it with our 10 year old. He was diagnosed one year ago in April. We would also get mad at take privlages away, try talking with him, and the list goes on,,,what somewhat worked for Dylan is I talked to His Doctor right in front of him about his attitude. His Doctor put it into terms he could understand and we are seeing an improvement.
 
 He didn't grow up with this either and now that the meds are working he is feeling fine and not understanding the importance of his meds. He also had a feeding tube in place in October because he can't gain weight on his own. Kids don't get that its perventitive measurres. I have 8 children and 4 of them were diagnosed around the same time. Dylan in April and the other 3 in August. They all are going through the same thing. My older girls are tough. We have to physically get the neb treatments, hand their vest to them, just to make sure they do it.
 
 Another thing that has changed Dylan's mind is that is older sister is really sick right now and he see's her struggle. He also doesn't understand that his world could change tomorrow. Maybe go on YouTube and find some CF videos and show her some of the other struggles people with CF are going through. I'm not saying thats what would happen to her but its possible. Kind of a scare tatic if you will....
 
 This disease is so hard for kids and families. Trust me, we are there with you.
 
 (((hugs)))
 Tina

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