Pre-Teen Anger due to late diagnosis

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jessykt

Guest
I'm 33, still hate treatments and still throw myself a pity party every once in awhile!
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<br />There's got to be some resources for your son through your cf clinic-do you see an individual pediatrician or a cf specialist? If you can't find someone knowledgeable in cf, maybe finding someone experienced in health related trauma would be the next best thing. As someone else said, many kids tend to open up to others while shutting their parents out.
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<br />I have a 12 year old, and the lessons that he needs to learn on his own are the most painful, so I understand your frustration in watching him go through this. I honestly don't have any good suggestions because I myself struggle with keeping a regimen. You said his regimen is "fairly simple," well, yes and no. It is very simple compared to being admitted, but I detest it with so much passion! I can't ever explain it to my husband, and I'm sure he feels the same way you do when you are arguing with your son. It certainly isn't simple when I've got so many other things to do!
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<br />Are you comfortable finding friends for him through here or some other cf site? I go through spurts of talking with other cfers, but lately it's been a great comfort to talk with others who do know exactly what I am going through. And you are right, there are tons of other cfers who have it way worse than he does, and maybe by connecting with those folks he will see that he's very fortunate and needs to keep it that way. Also, if he can connect to others who do live out their dreams (even if they did have to change) and succeed in being healthy and happy, he won't feel like he wants to die and just get it over with. I HATE cf, but it's also shaped who I am and what I love to do. I think it's been a good lesson in empathy and compassion, and I've found my passion in life is giving back to others.
 
S

Swallowtail66

Guest
<P>My now 21 year old was 13 when diagnosed.  It was really bad.  She screamed that she hated me more than once as I made her do her therapy.  However, she probably would have said that even if there were no treatments or CF involved!  A therapist thought it best to give her a life expectancy to motivate her...BAD idea.  Then he told her to quit stressing me or I would die.  Then she had separation anxiety until she was 16.  She lost the will to live and didn't value her life for a while.  I wish I could tell you that it is totally over now, butI can't quite.   However, she is in college and works two part-time jobs.  She lives alone and has been with the same fellow for years.  She has friends and a social life.  She is basically a normal young woman who happens to have a difficult disease.  I am very proud of the progress she has made.  </P>
<P> My 14 year old (diagnosed at 6) told me the other day that she is tired of being "handicapped" and taking so many pills.  I reminded her that it could be worse and it seemed to help - that is the difference between a late diagnosis and an early one.  </P>
<P>I was diagnosed at 37.  I still have periods where I am noncompliant with meds (just a little) and feel down that I am not as healthy as I would like to be.  I still feel really sad on clinic days that my children are not as healthy as I would like them to be.  Dealing with this disease is a process that takes lots of love and forgiveness.  For us, faith in God is vital. Our family is a team and we do it together.  </P>
<P> </P>
<P>Just never give up.  Every day starts new.  Balance protection with tough love.  Don't bottle your feelings.  Find someone to share who will let you vent and pick you back up.  There are good days and bad days.  One day at a time.  Most other cliches apply.  Keep us updated.</P>
 
S

Swallowtail66

Guest
<P>My now 21 year old was 13 when diagnosed. It was really bad. She screamed that she hated me more than once as I made her do her therapy. However, she probably would have said that even if there were notreatmentsor CF involved! A therapist thought it best to give her a life expectancy to motivate her...BAD idea. Then he told her to quit stressing me or I would die. Then she had separation anxiety until she was 16. She lost the will to live and didn't value her life for a while. I wish I could tell you that it is totally over now, butI can't quite.However, she is in college and works two part-time jobs. She lives alone and has been with the same fellow for years. She has friends and a social life. She is basically a normal young woman who happens to have a difficult disease. I am very proud of the progress she has made. </P>
<P>My 14 year old (diagnosed at 6)told me the other day that she is tired of being "handicapped" and taking so many pills. I reminded her that it could be worse and it seemed to help - that is the difference between a late diagnosis and an early one. </P>
<P>I was diagnosed at 37. I still have periods where I am noncompliant with meds (just a little) and feel down that I am not as healthy as I would like to be. I still feel really sad on clinic days that my children are not as healthy as I would like them to be. Dealing with this disease is a process that takes lots of love and forgiveness. For us, faith in Godis vital.Our familyis a team and we do it together. </P>
<P></P>
<P>Just never give up. Every day starts new. Balance protection with tough love. Don't bottle your feelings. Find someone to share who will let you vent and pick you back up. There are good days and bad days. One day at a time. Most other cliches apply. Keep us updated.</P>
 
S

Swallowtail66

Guest
<P><BR>My now 21 year old was 13 when diagnosed. It was really bad. She screamed that she hated me more than once as I made her do her therapy. However, she probably would have said that even if there were notreatmentsor CF involved! A therapist thought it best to give her a life expectancy to motivate her...BAD idea. Then he told her to quit stressing me or I would die. Then she had separation anxiety until she was 16. She lost the will to live and didn't value her life for a while. I wish I could tell you that it is totally over now, butI can't quite.However, she is in college and works two part-time jobs. She lives alone and has been with the same fellow for years. She has friends and a social life. She is basically a normal young woman who happens to have a difficult disease. I am very proud of the progress she has made. </P>
<P>My 14 year old (diagnosed at 6)told me the other day that she is tired of being "handicapped" and taking so many pills. I reminded her that it could be worse and it seemed to help - that is the difference between a late diagnosis and an early one. </P>
<P>I was diagnosed at 37. I still have periods where I am noncompliant with meds (just a little) and feel down that I am not as healthy as I would like to be. I still feel really sad on clinic days that my children are not as healthy as I would like them to be. Dealing with this disease is a process that takes lots of love and forgiveness. For us, faith in Godis vital.Our familyis a team and we do it together. </P>
<P></P>
<P>Just never give up. Every day starts new. Balance protection with tough love. Don't bottle your feelings. Find someone to share who will let you vent and pick you back up. There are good days and bad days. One day at a time. Most other cliches apply. Keep us updated.</P>
 
J

jamoncita

New member
Hi there. I'm sorry to hear that you're son is not dealing well, but i was in his position with a late diagnosis (at 16). his reactions sound very similar to mine. though i never yelled at my mom or expressed that i wanted to die, i got tired of her constant reminders to do my treatment, and i finally told her to lay off because "i can do it myself." i didn't of course, and she backed way off - something i still am trying to forgive. she was the only who made the effort to get me to do what i needed to do. so i must tell you not to give up. don't stop pushing him. you may need to find different ways to do so, but don't back off just because your son is angry with you. the anger is not personal. if you can, i think it would be really good for you to be firm (but gentle) in telling him that you love him and that is why you are pushing him. tell him that it is his choice what kind of life he wants to live and that he is fully able to maintain all of his former activities even if it is tough incorporating new treatments and meds. he is allowed to be upset, but you cannot allow him to let it go on forever. he needs to know his life isn't over by any means. help him to understand cf and that he is going to be okay, and that you and your family are there to help him all the way through his treatments and everything. he is in control here, and you just need to let him know you want to help him because he cannot simply give up.
also, i think it is important for him to reach out and talk about all this because a late diagnosis (or any diagnosis of CF) can really turn your world upside down. he needs to address his fears rather than letting them get the best of him.
i hope this helps, and i wish you and your family the best of luck.
 
J

jamoncita

New member
Hi there. I'm sorry to hear that you're son is not dealing well, but i was in his position with a late diagnosis (at 16). his reactions sound very similar to mine. though i never yelled at my mom or expressed that i wanted to die, i got tired of her constant reminders to do my treatment, and i finally told her to lay off because "i can do it myself." i didn't of course, and she backed way off - something i still am trying to forgive. she was the only who made the effort to get me to do what i needed to do. so i must tell you not to give up. don't stop pushing him. you may need to find different ways to do so, but don't back off just because your son is angry with you. the anger is not personal. if you can, i think it would be really good for you to be firm (but gentle) in telling him that you love him and that is why you are pushing him. tell him that it is his choice what kind of life he wants to live and that he is fully able to maintain all of his former activities even if it is tough incorporating new treatments and meds. he is allowed to be upset, but you cannot allow him to let it go on forever. he needs to know his life isn't over by any means. help him to understand cf and that he is going to be okay, and that you and your family are there to help him all the way through his treatments and everything. he is in control here, and you just need to let him know you want to help him because he cannot simply give up.
also, i think it is important for him to reach out and talk about all this because a late diagnosis (or any diagnosis of CF) can really turn your world upside down. he needs to address his fears rather than letting them get the best of him.
i hope this helps, and i wish you and your family the best of luck.
 
J

jamoncita

New member
Hi there. I'm sorry to hear that you're son is not dealing well, but i was in his position with a late diagnosis (at 16). his reactions sound very similar to mine. though i never yelled at my mom or expressed that i wanted to die, i got tired of her constant reminders to do my treatment, and i finally told her to lay off because "i can do it myself." i didn't of course, and she backed way off - something i still am trying to forgive. she was the only who made the effort to get me to do what i needed to do. so i must tell you not to give up. don't stop pushing him. you may need to find different ways to do so, but don't back off just because your son is angry with you. the anger is not personal. if you can, i think it would be really good for you to be firm (but gentle) in telling him that you love him and that is why you are pushing him. tell him that it is his choice what kind of life he wants to live and that he is fully able to maintain all of his former activities even if it is tough incorporating new treatments and meds. he is allowed to be upset, but you cannot allow him to let it go on forever. he needs to know his life isn't over by any means. help him to understand cf and that he is going to be okay, and that you and your family are there to help him all the way through his treatments and everything. he is in control here, and you just need to let him know you want to help him because he cannot simply give up.
<br />also, i think it is important for him to reach out and talk about all this because a late diagnosis (or any diagnosis of CF) can really turn your world upside down. he needs to address his fears rather than letting them get the best of him.
<br />i hope this helps, and i wish you and your family the best of luck.
<br />
 
T

tatmagic

New member
Anger due to late diagnosis

I was diagnosed at 19 and my life was changed right away. It was so hard to go from taking one medicine a day to 10+ a day was unbelievable. I know it seams simple with vesting x 2, nebulizing saline x 2, and one treatment of Pulmozyne a day but from nothing to Everything is hard on people. It took me a year and a half to stick with my treatments. Its hard to understand why its happening now,so many thing are going through your mind like are you sure why wasn't it found earlier, this can't be I feel fine. You just need to be there for him . My mom tried to control my whole treatment life but she just made it worse. Just support him.
 
T

tatmagic

New member
Anger due to late diagnosis

I was diagnosed at 19 and my life was changed right away. It was so hard to go from taking one medicine a day to 10+ a day was unbelievable. I know it seams simple with vesting x 2, nebulizing saline x 2, and one treatment of Pulmozyne a day but from nothing to Everything is hard on people. It took me a year and a half to stick with my treatments. Its hard to understand why its happening now,so many thing are going through your mind like are you sure why wasn't it found earlier, this can't be I feel fine. You just need to be there for him . My mom tried to control my whole treatment life but she just made it worse. Just support him.
 
T

tatmagic

New member
Anger due to late diagnosis

I was diagnosed at 19 and my life was changed right away. It was so hard to go from taking one medicine a day to 10+ a day was unbelievable. I know it seams simple with vesting x 2, nebulizing saline x 2, and one treatment of Pulmozyne a day but from nothing to Everything is hard on people. It took me a year and a half to stick with my treatments. Its hard to understand why its happening now,so many thing are going through your mind like are you sure why wasn't it found earlier, this can't be I feel fine. You just need to be there for him . My mom tried to control my whole treatment life but she just made it worse. Just support him.
 
M

MommaKas

Guest
Seems that is not as uncommon as I thought. My daughter, who just turned 12, was diagnosed just a couple months before her 11th birthday, and immidately hospitalized....it came as quite a shock to us, and of course, to her.... At first she didn't mind... her first time on the vest, she laughed so much we were all near tears. Sadly, as I expected, it quickly lost it's humor when the reality of having to do it EVERY day for the rest of her life set in. I can't count how many times she has told me she just wants to be "normal" again, or even just stop treatments... We have had many issues with her and compliance. She doesn't get angry, but she gets fed up and will lie about doing her treatments, etc... I did have her see a counselor, and it was a miracle really, because her counselor was a mom of a 20 something year old son who has CF, so she could really understand... I don't know that it worked miracles, I still have a problem making sure she has done ALL of her meds every day (espeically the miralax) but it has gotten better.... another thing that may help, is having your son talk to kids his own age who can really understand what he's going through.... I know my daugter would love to do that... she is always saying she would like to have friends who "get it"..... Good luck and God Bless <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MommaKas

Guest
Seems that is not as uncommon as I thought. My daughter, who just turned 12, was diagnosed just a couple months before her 11th birthday, and immidately hospitalized....it came as quite a shock to us, and of course, to her.... At first she didn't mind... her first time on the vest, she laughed so much we were all near tears. Sadly, as I expected, it quickly lost it's humor when the reality of having to do it EVERY day for the rest of her life set in. I can't count how many times she has told me she just wants to be "normal" again, or even just stop treatments... We have had many issues with her and compliance. She doesn't get angry, but she gets fed up and will lie about doing her treatments, etc... I did have her see a counselor, and it was a miracle really, because her counselor was a mom of a 20 something year old son who has CF, so she could really understand... I don't know that it worked miracles, I still have a problem making sure she has done ALL of her meds every day (espeically the miralax) but it has gotten better.... another thing that may help, is having your son talk to kids his own age who can really understand what he's going through.... I know my daugter would love to do that... she is always saying she would like to have friends who "get it"..... Good luck and God Bless <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MommaKas

Guest
Seems that is not as uncommon as I thought. My daughter, who just turned 12, was diagnosed just a couple months before her 11th birthday, and immidately hospitalized....it came as quite a shock to us, and of course, to her.... At first she didn't mind... her first time on the vest, she laughed so much we were all near tears. Sadly, as I expected, it quickly lost it's humor when the reality of having to do it EVERY day for the rest of her life set in. I can't count how many times she has told me she just wants to be "normal" again, or even just stop treatments... We have had many issues with her and compliance. She doesn't get angry, but she gets fed up and will lie about doing her treatments, etc... I did have her see a counselor, and it was a miracle really, because her counselor was a mom of a 20 something year old son who has CF, so she could really understand... I don't know that it worked miracles, I still have a problem making sure she has done ALL of her meds every day (espeically the miralax) but it has gotten better.... another thing that may help, is having your son talk to kids his own age who can really understand what he's going through.... I know my daugter would love to do that... she is always saying she would like to have friends who "get it"..... Good luck and God Bless <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sonja

New member
My 12-year-old son has had different issues since he was born, but he just had blood drawn yesterday to see if he has CF, so I am new to all of this. I read through here and I was wondering a couple of things. Did your son have other symptoms besides getting dehydrated at summer camp? Also, everyone was talking about how much they hate the treatments. What are the treatments? I thought treatments were just medications and possibly chest percussion so I didn't understand why they were so hated by the kids.
 
S

Sonja

New member
My 12-year-old son has had different issues since he was born, but he just had blood drawn yesterday to see if he has CF, so I am new to all of this. I read through here and I was wondering a couple of things. Did your son have other symptoms besides getting dehydrated at summer camp? Also, everyone was talking about how much they hate the treatments. What are the treatments? I thought treatments were just medications and possibly chest percussion so I didn't understand why they were so hated by the kids.
 
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