10 Year old not wanting to do treatments

J

JORDYSMOM

New member
This is such a huge issue with these late dx kids! Jordan was dx at 15 - an age where they are already rebelling. I feel your frustration.

Having our doctor talk to Jordan was somewhat helpful. Maybe you can ask yours to have a chat with your child. You might also try some sort of reward system. For instance, say if you are completely compliant for this entire week, you can do something special on the weekend. Take it week by week, and that way the reward is more frequent, so it's easier to stick to it.

Good luck.

Stacey
 
J

JORDYSMOM

New member
This is such a huge issue with these late dx kids! Jordan was dx at 15 - an age where they are already rebelling. I feel your frustration.

Having our doctor talk to Jordan was somewhat helpful. Maybe you can ask yours to have a chat with your child. You might also try some sort of reward system. For instance, say if you are completely compliant for this entire week, you can do something special on the weekend. Take it week by week, and that way the reward is more frequent, so it's easier to stick to it.

Good luck.

Stacey
 
J

JORDYSMOM

New member
This is such a huge issue with these late dx kids! Jordan was dx at 15 - an age where they are already rebelling. I feel your frustration.

Having our doctor talk to Jordan was somewhat helpful. Maybe you can ask yours to have a chat with your child. You might also try some sort of reward system. For instance, say if you are completely compliant for this entire week, you can do something special on the weekend. Take it week by week, and that way the reward is more frequent, so it's easier to stick to it.

Good luck.

Stacey
 
J

JORDYSMOM

New member
This is such a huge issue with these late dx kids! Jordan was dx at 15 - an age where they are already rebelling. I feel your frustration.

Having our doctor talk to Jordan was somewhat helpful. Maybe you can ask yours to have a chat with your child. You might also try some sort of reward system. For instance, say if you are completely compliant for this entire week, you can do something special on the weekend. Take it week by week, and that way the reward is more frequent, so it's easier to stick to it.

Good luck.

Stacey
 
J

JORDYSMOM

New member
This is such a huge issue with these late dx kids! Jordan was dx at 15 - an age where they are already rebelling. I feel your frustration.
<br />
<br />Having our doctor talk to Jordan was somewhat helpful. Maybe you can ask yours to have a chat with your child. You might also try some sort of reward system. For instance, say if you are completely compliant for this entire week, you can do something special on the weekend. Take it week by week, and that way the reward is more frequent, so it's easier to stick to it.
<br />
<br />Good luck.
<br />
<br />Stacey
 
J

JazzysMom

New member
I wish I had an answer for you.

I wasnt diagnosed until I was 7. I didnt do treatments on a regular basis most of my life. I was able to get away with it for the most part short term.

When it would catch up with me, I would go into the hospital. I did my time, came home & continued on with life. I never thought of the hospital admits as terrible. It actually was fun. Even when I was 3 hours from home & not able to get visits on a regular basis. Even when I was in the hospital for Christmas as a kid. So that wasnt enough to make me do my treatments.

Sadly even after my daughter was born I was rebellious. It wasnt until I could not make it through the day without gasping for air that the reality of CF hit me. I even had all my CF friends as a kid pass on. I was different in my mind so it didnt affect me.

I always wonder HOW much of my non compliance affected my stage of CF now. How much would my CF have progressed? I will never know for sure.........

The one thing I was compliant on until my teen years was my enzymes & that was because I got tired of the painful cramps & diahrea that came with it. YET when my body changed & I was able to get away with not taking them without immediate consequences....I DID!

If I could turn back time (isnt that lyrics to a song of Cher's?) I would do things differently knowing the long term affects of CF. Dont get me wrong....I lived growing up & that I dont regret, but looking back....well ya know!

So often I wish I had the power of fast forwarding a young CFer to get a glimpse of the future so they "get it", but I really, really think it is natural to think it wont happen or just not understand what its like.

This applies to SOOOO many things in life tho. CF is just so harsh in that aspect.

All this ranting & writing & I havent offered you much help I guess. I just wish I had a magical answer that will last throughout the life of a CFer!!!

HUGS
 
J

JazzysMom

New member
I wish I had an answer for you.

I wasnt diagnosed until I was 7. I didnt do treatments on a regular basis most of my life. I was able to get away with it for the most part short term.

When it would catch up with me, I would go into the hospital. I did my time, came home & continued on with life. I never thought of the hospital admits as terrible. It actually was fun. Even when I was 3 hours from home & not able to get visits on a regular basis. Even when I was in the hospital for Christmas as a kid. So that wasnt enough to make me do my treatments.

Sadly even after my daughter was born I was rebellious. It wasnt until I could not make it through the day without gasping for air that the reality of CF hit me. I even had all my CF friends as a kid pass on. I was different in my mind so it didnt affect me.

I always wonder HOW much of my non compliance affected my stage of CF now. How much would my CF have progressed? I will never know for sure.........

The one thing I was compliant on until my teen years was my enzymes & that was because I got tired of the painful cramps & diahrea that came with it. YET when my body changed & I was able to get away with not taking them without immediate consequences....I DID!

If I could turn back time (isnt that lyrics to a song of Cher's?) I would do things differently knowing the long term affects of CF. Dont get me wrong....I lived growing up & that I dont regret, but looking back....well ya know!

So often I wish I had the power of fast forwarding a young CFer to get a glimpse of the future so they "get it", but I really, really think it is natural to think it wont happen or just not understand what its like.

This applies to SOOOO many things in life tho. CF is just so harsh in that aspect.

All this ranting & writing & I havent offered you much help I guess. I just wish I had a magical answer that will last throughout the life of a CFer!!!

HUGS
 
J

JazzysMom

New member
I wish I had an answer for you.

I wasnt diagnosed until I was 7. I didnt do treatments on a regular basis most of my life. I was able to get away with it for the most part short term.

When it would catch up with me, I would go into the hospital. I did my time, came home & continued on with life. I never thought of the hospital admits as terrible. It actually was fun. Even when I was 3 hours from home & not able to get visits on a regular basis. Even when I was in the hospital for Christmas as a kid. So that wasnt enough to make me do my treatments.

Sadly even after my daughter was born I was rebellious. It wasnt until I could not make it through the day without gasping for air that the reality of CF hit me. I even had all my CF friends as a kid pass on. I was different in my mind so it didnt affect me.

I always wonder HOW much of my non compliance affected my stage of CF now. How much would my CF have progressed? I will never know for sure.........

The one thing I was compliant on until my teen years was my enzymes & that was because I got tired of the painful cramps & diahrea that came with it. YET when my body changed & I was able to get away with not taking them without immediate consequences....I DID!

If I could turn back time (isnt that lyrics to a song of Cher's?) I would do things differently knowing the long term affects of CF. Dont get me wrong....I lived growing up & that I dont regret, but looking back....well ya know!

So often I wish I had the power of fast forwarding a young CFer to get a glimpse of the future so they "get it", but I really, really think it is natural to think it wont happen or just not understand what its like.

This applies to SOOOO many things in life tho. CF is just so harsh in that aspect.

All this ranting & writing & I havent offered you much help I guess. I just wish I had a magical answer that will last throughout the life of a CFer!!!

HUGS
 
J

JazzysMom

New member
I wish I had an answer for you.

I wasnt diagnosed until I was 7. I didnt do treatments on a regular basis most of my life. I was able to get away with it for the most part short term.

When it would catch up with me, I would go into the hospital. I did my time, came home & continued on with life. I never thought of the hospital admits as terrible. It actually was fun. Even when I was 3 hours from home & not able to get visits on a regular basis. Even when I was in the hospital for Christmas as a kid. So that wasnt enough to make me do my treatments.

Sadly even after my daughter was born I was rebellious. It wasnt until I could not make it through the day without gasping for air that the reality of CF hit me. I even had all my CF friends as a kid pass on. I was different in my mind so it didnt affect me.

I always wonder HOW much of my non compliance affected my stage of CF now. How much would my CF have progressed? I will never know for sure.........

The one thing I was compliant on until my teen years was my enzymes & that was because I got tired of the painful cramps & diahrea that came with it. YET when my body changed & I was able to get away with not taking them without immediate consequences....I DID!

If I could turn back time (isnt that lyrics to a song of Cher's?) I would do things differently knowing the long term affects of CF. Dont get me wrong....I lived growing up & that I dont regret, but looking back....well ya know!

So often I wish I had the power of fast forwarding a young CFer to get a glimpse of the future so they "get it", but I really, really think it is natural to think it wont happen or just not understand what its like.

This applies to SOOOO many things in life tho. CF is just so harsh in that aspect.

All this ranting & writing & I havent offered you much help I guess. I just wish I had a magical answer that will last throughout the life of a CFer!!!

HUGS
 
J

JazzysMom

New member
I wish I had an answer for you.
<br />
<br />I wasnt diagnosed until I was 7. I didnt do treatments on a regular basis most of my life. I was able to get away with it for the most part short term.
<br />
<br />When it would catch up with me, I would go into the hospital. I did my time, came home & continued on with life. I never thought of the hospital admits as terrible. It actually was fun. Even when I was 3 hours from home & not able to get visits on a regular basis. Even when I was in the hospital for Christmas as a kid. So that wasnt enough to make me do my treatments.
<br />
<br />Sadly even after my daughter was born I was rebellious. It wasnt until I could not make it through the day without gasping for air that the reality of CF hit me. I even had all my CF friends as a kid pass on. I was different in my mind so it didnt affect me.
<br />
<br />I always wonder HOW much of my non compliance affected my stage of CF now. How much would my CF have progressed? I will never know for sure.........
<br />
<br />The one thing I was compliant on until my teen years was my enzymes & that was because I got tired of the painful cramps & diahrea that came with it. YET when my body changed & I was able to get away with not taking them without immediate consequences....I DID!
<br />
<br />If I could turn back time (isnt that lyrics to a song of Cher's?) I would do things differently knowing the long term affects of CF. Dont get me wrong....I lived growing up & that I dont regret, but looking back....well ya know!
<br />
<br />So often I wish I had the power of fast forwarding a young CFer to get a glimpse of the future so they "get it", but I really, really think it is natural to think it wont happen or just not understand what its like.
<br />
<br />This applies to SOOOO many things in life tho. CF is just so harsh in that aspect.
<br />
<br />All this ranting & writing & I havent offered you much help I guess. I just wish I had a magical answer that will last throughout the life of a CFer!!!
<br />
<br />HUGS
 
A

ADNAN

New member
Please help
I am father of the Middle East,my baby cystic fibrosis, the age my son is seven years, the medical care available here in the zone is the primitive, as well as medicines are not available on a permanent basis to deal with my son, also the information about the disease and its evolution is not sufficient, especially that my son had contracted the disease in the age of six, as I understand that this disease has dozens of branches, my son needed medical care to the complex is known to many of you, and these are non-professionally in our region, I ask that you notify me of any progress on the medication, especially cystic fibrosis patients or medical equipment as a donor to my son
 
A

ADNAN

New member
Please help
I am father of the Middle East,my baby cystic fibrosis, the age my son is seven years, the medical care available here in the zone is the primitive, as well as medicines are not available on a permanent basis to deal with my son, also the information about the disease and its evolution is not sufficient, especially that my son had contracted the disease in the age of six, as I understand that this disease has dozens of branches, my son needed medical care to the complex is known to many of you, and these are non-professionally in our region, I ask that you notify me of any progress on the medication, especially cystic fibrosis patients or medical equipment as a donor to my son
 
A

ADNAN

New member
Please help
I am father of the Middle East,my baby cystic fibrosis, the age my son is seven years, the medical care available here in the zone is the primitive, as well as medicines are not available on a permanent basis to deal with my son, also the information about the disease and its evolution is not sufficient, especially that my son had contracted the disease in the age of six, as I understand that this disease has dozens of branches, my son needed medical care to the complex is known to many of you, and these are non-professionally in our region, I ask that you notify me of any progress on the medication, especially cystic fibrosis patients or medical equipment as a donor to my son
 
A

ADNAN

New member
Please help
I am father of the Middle East,my baby cystic fibrosis, the age my son is seven years, the medical care available here in the zone is the primitive, as well as medicines are not available on a permanent basis to deal with my son, also the information about the disease and its evolution is not sufficient, especially that my son had contracted the disease in the age of six, as I understand that this disease has dozens of branches, my son needed medical care to the complex is known to many of you, and these are non-professionally in our region, I ask that you notify me of any progress on the medication, especially cystic fibrosis patients or medical equipment as a donor to my son
 
A

ADNAN

New member
Please help
<br />I am father of the Middle East,my baby cystic fibrosis, the age my son is seven years, the medical care available here in the zone is the primitive, as well as medicines are not available on a permanent basis to deal with my son, also the information about the disease and its evolution is not sufficient, especially that my son had contracted the disease in the age of six, as I understand that this disease has dozens of branches, my son needed medical care to the complex is known to many of you, and these are non-professionally in our region, I ask that you notify me of any progress on the medication, especially cystic fibrosis patients or medical equipment as a donor to my son
 
S

sdelorenzo

Guest
Great book for you - "Parenting Children with Health Issues" by Lisa Greene (CF mom of two) and Foster Cline, author of Love and Logic. It addresses the problems that you are facing. You can get it on Amazon.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 6 weeks, no cf
 
S

sdelorenzo

Guest
Great book for you - "Parenting Children with Health Issues" by Lisa Greene (CF mom of two) and Foster Cline, author of Love and Logic. It addresses the problems that you are facing. You can get it on Amazon.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 6 weeks, no cf
 
S

sdelorenzo

Guest
Great book for you - "Parenting Children with Health Issues" by Lisa Greene (CF mom of two) and Foster Cline, author of Love and Logic. It addresses the problems that you are facing. You can get it on Amazon.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 6 weeks, no cf
 
S

sdelorenzo

Guest
Great book for you - "Parenting Children with Health Issues" by Lisa Greene (CF mom of two) and Foster Cline, author of Love and Logic. It addresses the problems that you are facing. You can get it on Amazon.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 6 weeks, no cf
 
S

sdelorenzo

Guest
Great book for you - "Parenting Children with Health Issues" by Lisa Greene (CF mom of two) and Foster Cline, author of Love and Logic. It addresses the problems that you are facing. You can get it on Amazon.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 6 weeks, no cf
 
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