Late diagnosis for Pre-Teen

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jcwise62

Guest
Brad:<br>54 and still kicking. I am going to show him your story, and congratulations on the healthy son! I swear if my boy could just get back to caring about life and the world around him. But as I told Liza, I am not sure if it is CF or pre-teen anger half the time. <br>Thanks for the information. <br>Jeff
 
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robert321

New member
I'm still around liza! I've been doing a whole lot more reading than posting as of late though. I was dxed at 14, so a little later than your son. I've never been one to express emotions much so most of it stayed bottled up. I really don't have any brilliant revalation to solve the problem, there isn't one. In some ways I look at people that were diagnosed at birth or in the first year or two as lucky in that I look back and remember a time that I didn't have to do these breathing treatments and start thinking "you know if I got by with not doing them this long, I should be ok to skip this one right?" and "I didn't feel so bad before I was diagnosed, I don't need these" but years of that attitude is catching up to me in a big way. I still have trouble forcing myself to get things done. I'm 21 and a few times a week flat forget enzymes. People diagnosed at birth treatments are engrained into their being and its like brushing thier teeth, only takes longer. I know thats not exactly right and is a struggle for everyone but so often I can't outrun that thought that I was ok without them before...
Send me a message, or add me on facebook, but be sure and send a message to let me know who you are so I know to not add you to the "not now"s I'm not sure what insight I can give but I would certainly love to help if I can
 
R

robert321

New member
I'm still around liza! I've been doing a whole lot more reading than posting as of late though. I was dxed at 14, so a little later than your son. I've never been one to express emotions much so most of it stayed bottled up. I really don't have any brilliant revalation to solve the problem, there isn't one. In some ways I look at people that were diagnosed at birth or in the first year or two as lucky in that I look back and remember a time that I didn't have to do these breathing treatments and start thinking "you know if I got by with not doing them this long, I should be ok to skip this one right?" and "I didn't feel so bad before I was diagnosed, I don't need these" but years of that attitude is catching up to me in a big way. I still have trouble forcing myself to get things done. I'm 21 and a few times a week flat forget enzymes. People diagnosed at birth treatments are engrained into their being and its like brushing thier teeth, only takes longer. I know thats not exactly right and is a struggle for everyone but so often I can't outrun that thought that I was ok without them before...
Send me a message, or add me on facebook, but be sure and send a message to let me know who you are so I know to not add you to the "not now"s I'm not sure what insight I can give but I would certainly love to help if I can
 
R

robert321

New member
I'm still around liza! I've been doing a whole lot more reading than posting as of late though. I was dxed at 14, so a little later than your son. I've never been one to express emotions much so most of it stayed bottled up. I really don't have any brilliant revalation to solve the problem, there isn't one. In some ways I look at people that were diagnosed at birth or in the first year or two as lucky in that I look back and remember a time that I didn't have to do these breathing treatments and start thinking "you know if I got by with not doing them this long, I should be ok to skip this one right?" and "I didn't feel so bad before I was diagnosed, I don't need these" but years of that attitude is catching up to me in a big way. I still have trouble forcing myself to get things done. I'm 21 and a few times a week flat forget enzymes. People diagnosed at birth treatments are engrained into their being and its like brushing thier teeth, only takes longer. I know thats not exactly right and is a struggle for everyone but so often I can't outrun that thought that I was ok without them before...
<br />Send me a message, or add me on facebook, but be sure and send a message to let me know who you are so I know to not add you to the "not now"s I'm not sure what insight I can give but I would certainly love to help if I can
 
C

cpubanz

New member
Jeff,
I was diagnosed at 13. I was in the same boat in the sense that I did not know how to react. I was not athletic to start with so I did not lose anything there. I did become active later and wished I had sooner. I hate to use the term "Mild Case" of Cf, but let's face it; if he (me) was diagnosed so late it obviously is not as bad as it could be. I am 38 for years I did not take care of myself. I did not do treatments and take meds as I was supposed to. Exercise was a biggie for my when I was in high school because I was a drummer in marching band and I also wanted to be in the best shape I could. Of course as we all do I got lazy so exercise is not on the front burner so to speak. I would simply share some the stories you get here with him. Take it from those who have lived it wrong/right and keep up with all meds and treatments, exercise daily. We are so close to a cure that in his lifetime I am sure he will see it and we want the damage the disease causes to be minimal.
 
C

cpubanz

New member
Jeff,
I was diagnosed at 13. I was in the same boat in the sense that I did not know how to react. I was not athletic to start with so I did not lose anything there. I did become active later and wished I had sooner. I hate to use the term "Mild Case" of Cf, but let's face it; if he (me) was diagnosed so late it obviously is not as bad as it could be. I am 38 for years I did not take care of myself. I did not do treatments and take meds as I was supposed to. Exercise was a biggie for my when I was in high school because I was a drummer in marching band and I also wanted to be in the best shape I could. Of course as we all do I got lazy so exercise is not on the front burner so to speak. I would simply share some the stories you get here with him. Take it from those who have lived it wrong/right and keep up with all meds and treatments, exercise daily. We are so close to a cure that in his lifetime I am sure he will see it and we want the damage the disease causes to be minimal.
 
C

cpubanz

New member
Jeff,
<br />I was diagnosed at 13. I was in the same boat in the sense that I did not know how to react. I was not athletic to start with so I did not lose anything there. I did become active later and wished I had sooner. I hate to use the term "Mild Case" of Cf, but let's face it; if he (me) was diagnosed so late it obviously is not as bad as it could be. I am 38 for years I did not take care of myself. I did not do treatments and take meds as I was supposed to. Exercise was a biggie for my when I was in high school because I was a drummer in marching band and I also wanted to be in the best shape I could. Of course as we all do I got lazy so exercise is not on the front burner so to speak. I would simply share some the stories you get here with him. Take it from those who have lived it wrong/right and keep up with all meds and treatments, exercise daily. We are so close to a cure that in his lifetime I am sure he will see it and we want the damage the disease causes to be minimal.
<br />
 
H

Hardak

New member
Kinda a rough age for a kid to begin with, girls may or may not be starting to look interesting and if he feels he stands out. He likely will in what ever manor he see's him self. I've known I've had CF all my life so I grew up on "program". Was at about his age that I realized "holy crap I'm going to die.". At some point you just get over it. I would highly suggest keeping him pushed into sports, even if he goes out and half asses it. Lung capacity is a use it or lose it kinda thing. He may be starting to take a more intellectual path in life then what he was on before. I know at that age I realized my lungs would fall apart at some point and that my mind would still be sharp, use the stronger tools I had so to speak. Tell him this one maybe it will make a difrance maybe it wont.. "So you have to take a little more time to get ready in the mornings, and you have a reason to come home at night. You're still not any different then any other kid on the planet. Best of luck, on the subject. If his friends care they will come give him ***** about hiding and drag his ass out of the house for you.
 
H

Hardak

New member
Kinda a rough age for a kid to begin with, girls may or may not be starting to look interesting and if he feels he stands out. He likely will in what ever manor he see's him self. I've known I've had CF all my life so I grew up on "program". Was at about his age that I realized "holy crap I'm going to die.". At some point you just get over it. I would highly suggest keeping him pushed into sports, even if he goes out and half asses it. Lung capacity is a use it or lose it kinda thing. He may be starting to take a more intellectual path in life then what he was on before. I know at that age I realized my lungs would fall apart at some point and that my mind would still be sharp, use the stronger tools I had so to speak. Tell him this one maybe it will make a difrance maybe it wont.. "So you have to take a little more time to get ready in the mornings, and you have a reason to come home at night. You're still not any different then any other kid on the planet. Best of luck, on the subject. If his friends care they will come give him ***** about hiding and drag his ass out of the house for you.
 
H

Hardak

New member
Kinda a rough age for a kid to begin with, girls may or may not be starting to look interesting and if he feels he stands out. He likely will in what ever manor he see's him self. I've known I've had CF all my life so I grew up on "program". Was at about his age that I realized "holy crap I'm going to die.". At some point you just get over it. I would highly suggest keeping him pushed into sports, even if he goes out and half asses it. Lung capacity is a use it or lose it kinda thing. He may be starting to take a more intellectual path in life then what he was on before. I know at that age I realized my lungs would fall apart at some point and that my mind would still be sharp, use the stronger tools I had so to speak. Tell him this one maybe it will make a difrance maybe it wont.. "So you have to take a little more time to get ready in the mornings, and you have a reason to come home at night. You're still not any different then any other kid on the planet. Best of luck, on the subject. If his friends care they will come give him ***** about hiding and drag his ass out of the house for you.
 
G

Gentrygirl

New member
How long has it been since his dx? My son was also diagnosed at age 12, and, get this....also last name Wise. He is doing great, despite a few hiccups of getting him what he needs thru insurance. A few behavioral things that boiled down to the age and really not the CF although at the time it was in question, but other than that, he has decided that the CF is just a thing that comes along with it all - extra time to play video games as the bonus. He is 14 now, the girls love him, he is over thinking it is something to hide or hold him back. Maybe we can hook them up on FB so he can give him some encouragement. It sounds like he is just scared from what he has read.There is so much that is better now - so many people that live beyond the average age, REAL hope for cures, successful families, better treatments that lead to easier living, etc. Private message me? I think it would be good for him to talk to someone his own age that has JUST been through the dx and adjustment. He WILL adjust. It WILL GET EASIER. HANG IN THERE!!
 
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Gentrygirl

New member
How long has it been since his dx? My son was also diagnosed at age 12, and, get this....also last name Wise. He is doing great, despite a few hiccups of getting him what he needs thru insurance. A few behavioral things that boiled down to the age and really not the CF although at the time it was in question, but other than that, he has decided that the CF is just a thing that comes along with it all - extra time to play video games as the bonus. He is 14 now, the girls love him, he is over thinking it is something to hide or hold him back. Maybe we can hook them up on FB so he can give him some encouragement. It sounds like he is just scared from what he has read.There is so much that is better now - so many people that live beyond the average age, REAL hope for cures, successful families, better treatments that lead to easier living, etc. Private message me? I think it would be good for him to talk to someone his own age that has JUST been through the dx and adjustment. He WILL adjust. It WILL GET EASIER. HANG IN THERE!!
 
G

Gentrygirl

New member
How long has it been since his dx? My son was also diagnosed at age 12, and, get this....also last name Wise. He is doing great, despite a few hiccups of getting him what he needs thru insurance. A few behavioral things that boiled down to the age and really not the CF although at the time it was in question, but other than that, he has decided that the CF is just a thing that comes along with it all - extra time to play video games as the bonus. He is 14 now, the girls love him, he is over thinking it is something to hide or hold him back. Maybe we can hook them up on FB so he can give him some encouragement. It sounds like he is just scared from what he has read.There is so much that is better now - so many people that live beyond the average age, REAL hope for cures, successful families, better treatments that lead to easier living, etc. Private message me? I think it would be good for him to talk to someone his own age that has JUST been through the dx and adjustment. He WILL adjust. It WILL GET EASIER. HANG IN THERE!!
 
J

jcwise62

Guest
Robert:<div><br></div><div>Thanks for the words and the back story.  Your entire rational is what I am fighting against right now.  While some weeks are better, this being one of them, most weeks I think he remembers a time when he did not have to do these treatments.</div><div><br></div><div>You are also so right on the "skipping" attitude.  It does not help when his mother believes that treatments are "optional" depending on our schedule.  While I understand sometimes a vesting or saline nebulizing can be skipped due to delays in travel plans etc, I believe we should plan for them.</div><div><br></div><div>That said we are moving toward a common understanding.  I am glad you are back on the regime, I can only imagine how hard it must be to have to keep up with the medicine and treatments, but I do know that my Son has not had a cold or chest infection since his diagnosis and treatments started.  While I may be "Satan" at times, this is not a sprint but a marathon.</div><div><br></div><div>Thanks again for the comments.</div><div><br></div><div>Jeff Wise</div>
 
J

jcwise62

Guest
Robert:<br>Thanks for the words and the back story. Your entire rational is what I am fighting against right now. While some weeks are better, this being one of them, most weeks I think he remembers a time when he did not have to do these treatments.<br>You are also so right on the "skipping" attitude. It does not help when his mother believes that treatments are "optional" depending on our schedule. While I understand sometimes a vesting or saline nebulizing can be skipped due to delays in travel plans etc, I believe we should plan for them.<br>That said we are moving toward a common understanding. I am glad you are back on the regime, I can only imagine how hard it must be to have to keep up with the medicine and treatments, but I do know that my Son has not had a cold or chest infection since his diagnosis and treatments started. While I may be "Satan" at times, this is not a sprint but a marathon.<br>Thanks again for the comments.<br>Jeff Wise
 
J

jcwise62

Guest
Robert:<br>Thanks for the words and the back story. Your entire rational is what I am fighting against right now. While some weeks are better, this being one of them, most weeks I think he remembers a time when he did not have to do these treatments.<br>You are also so right on the "skipping" attitude. It does not help when his mother believes that treatments are "optional" depending on our schedule. While I understand sometimes a vesting or saline nebulizing can be skipped due to delays in travel plans etc, I believe we should plan for them.<br>That said we are moving toward a common understanding. I am glad you are back on the regime, I can only imagine how hard it must be to have to keep up with the medicine and treatments, but I do know that my Son has not had a cold or chest infection since his diagnosis and treatments started. While I may be "Satan" at times, this is not a sprint but a marathon.<br>Thanks again for the comments.<br>Jeff Wise
 
J

jcwise62

Guest
Robert:<div><br></div><div>Thanks for the words and the back story.  Your entire rational is what I am fighting against right now.  While some weeks are better, this being one of them, most weeks I think he remembers a time when he did not have to do these treatments.</div><div><br></div><div>You are also so right on the "skipping" attitude.  It does not help when his mother believes that treatments are "optional" depending on our schedule.  While I understand sometimes a vesting or saline nebulizing can be skipped due to delays in travel plans etc, I believe we should plan for them.</div><div><br></div><div>That said we are moving toward a common understanding.  I am glad you are back on the regime, I can only imagine how hard it must be to have to keep up with the medicine and treatments, but I do know that my Son has not had a cold or chest infection since his diagnosis and treatments started.  While I may be "Satan" at times, this is not a sprint but a marathon.</div><div><br></div><div>Thanks again for the comments.</div><div><br></div><div>Jeff Wise</div>
 
J

jcwise62

Guest
Robert:<br>Thanks for the words and the back story. Your entire rational is what I am fighting against right now. While some weeks are better, this being one of them, most weeks I think he remembers a time when he did not have to do these treatments.<br>You are also so right on the "skipping" attitude. It does not help when his mother believes that treatments are "optional" depending on our schedule. While I understand sometimes a vesting or saline nebulizing can be skipped due to delays in travel plans etc, I believe we should plan for them.<br>That said we are moving toward a common understanding. I am glad you are back on the regime, I can only imagine how hard it must be to have to keep up with the medicine and treatments, but I do know that my Son has not had a cold or chest infection since his diagnosis and treatments started. While I may be "Satan" at times, this is not a sprint but a marathon.<br>Thanks again for the comments.<br>Jeff Wise
 
J

jcwise62

Guest
Robert:<br>Thanks for the words and the back story. Your entire rational is what I am fighting against right now. While some weeks are better, this being one of them, most weeks I think he remembers a time when he did not have to do these treatments.<br>You are also so right on the "skipping" attitude. It does not help when his mother believes that treatments are "optional" depending on our schedule. While I understand sometimes a vesting or saline nebulizing can be skipped due to delays in travel plans etc, I believe we should plan for them.<br>That said we are moving toward a common understanding. I am glad you are back on the regime, I can only imagine how hard it must be to have to keep up with the medicine and treatments, but I do know that my Son has not had a cold or chest infection since his diagnosis and treatments started. While I may be "Satan" at times, this is not a sprint but a marathon.<br>Thanks again for the comments.<br>Jeff Wise
 
J

jcwise62

Guest
Thank you so much for the response.  You really hit the nail on the head .  He is a late diagnosis, and would not have been done had he not gotten so dehydrated at camp in the first place.  He is fortunate in that he is pancreatic sufficient.  <div><br></div><div>As for his sports, he really has dropped out in that area.  We are working on getting back into sports, but we get the "WHY??" a lot.  Again some of that is pre-teen angst, but some of it has to do with swallowing a lot of information and having his life shift in a major way.</div><div><br></div><div>I will show him your story tonight and perhaps yours, along with Roberts and Jerry Cahills, will show him a different path.</div><div><br></div><div>Either way, thank you for sharing.</div><div><br></div><div>Jeff Wise</div>
 
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