Late diagnosis for Pre-Teen

J

jcwise62

Guest
Hey All:<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">My son was a late diagnosis.  He is a Df508/p.R347P.  He had attended Summer camp and gotten very dehydrated.  This launched us down a long and winding path that resulted in a allergist requesting he be tested for CF 8 months later.  Needless to say, he came back positive.  Prior to this my son had been active in sports, a high achieving student with lots of friends and a broad spectrum of interest.</div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">He has not reacted to the news well.  Of course there was the inevitable denial, which we worked through, but he has slowly turned the diagnosis into a crutch.  He has curtailed his sports, claiming he is too tired or it is too hard to breathe.  He has slowly withdrawn from his friends and outside activities, all he wants to do is throw his own pity party, watch T.V. or play on the xBox or computer.  It is a struggle just to get him to go shoot baskets, go swimming, toss a ball, go for a after dinner walk.</div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I know some of this is due to Pre-teen angst, but he will sometimes breakdown weeping in his bed, telling his mom or myself he wishes he was just dead already, since his life is horrible since he has to do all these "treatments" every day for the rest of his life.  The treatment is fairly simple with vesting x 2, nebulizing saline x 2, and one treatment of Pulmozene(sic).   I have failed to reach him on the level of his path is much easier than most CF patients. </div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I don't know what I am looking for here, maybe just a moment to vent, as he was particularly virulent to me last night and this morning by telling me I don't understand and that I must hate him as I insist on him doing his treatments.  I was wondering if anyone else has been down this path?  It rips my heart out to have him scream at me, or tell me he wishes he was dead.  </div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Thanks in advance or any and all advice.</div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Jeff Wise</div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Father of Parker (Df508/p.R347P) age 12</div>
 
J

jcwise62

Guest
Hey All:<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">My son was a late diagnosis. He is a Df508/p.R347P. He had attended Summer camp and gotten very dehydrated. This launched us down a long and winding path that resulted in a allergist requesting he be tested for CF 8 months later. Needless to say, he came back positive. Prior to this my son had been active in sports, a high achieving student with lots of friends and a broad spectrum of interest.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">He has not reacted to the news well. Of course there was the inevitable denial, which we worked through, but he has slowly turned the diagnosis into a crutch. He has curtailed his sports, claiming he is too tired or it is too hard to breathe. He has slowly withdrawn from his friends and outside activities, all he wants to do is throw his own pity party, watch T.V. or play on the xBox or computer. It is a struggle just to get him to go shoot baskets, go swimming, toss a ball, go for a after dinner walk.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I know some of this is due to Pre-teen angst, but he will sometimes breakdown weeping in his bed, telling his mom or myself he wishes he was just dead already, since his life is horrible since he has to do all these "treatments" every day for the rest of his life. The treatment is fairly simple with vesting x 2, nebulizing saline x 2, and one treatment of Pulmozene(sic). I have failed to reach him on the level of his path is much easier than most CF patients.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I don't know what I am looking for here, maybe just a moment to vent, as he was particularly virulent to me last night and this morning by telling me I don't understand and that I must hate him as I insist on him doing his treatments. I was wondering if anyone else has been down this path? It rips my heart out to have him scream at me, or tell me he wishes he was dead. <div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Thanks in advance or any and all advice.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Jeff Wise<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Father of Parker (Df508/p.R347P) age 12
 
J

jcwise62

Guest
Hey All:<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">My son was a late diagnosis. He is a Df508/p.R347P. He had attended Summer camp and gotten very dehydrated. This launched us down a long and winding path that resulted in a allergist requesting he be tested for CF 8 months later. Needless to say, he came back positive. Prior to this my son had been active in sports, a high achieving student with lots of friends and a broad spectrum of interest.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">He has not reacted to the news well. Of course there was the inevitable denial, which we worked through, but he has slowly turned the diagnosis into a crutch. He has curtailed his sports, claiming he is too tired or it is too hard to breathe. He has slowly withdrawn from his friends and outside activities, all he wants to do is throw his own pity party, watch T.V. or play on the xBox or computer. It is a struggle just to get him to go shoot baskets, go swimming, toss a ball, go for a after dinner walk.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I know some of this is due to Pre-teen angst, but he will sometimes breakdown weeping in his bed, telling his mom or myself he wishes he was just dead already, since his life is horrible since he has to do all these "treatments" every day for the rest of his life. The treatment is fairly simple with vesting x 2, nebulizing saline x 2, and one treatment of Pulmozene(sic). I have failed to reach him on the level of his path is much easier than most CF patients.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I don't know what I am looking for here, maybe just a moment to vent, as he was particularly virulent to me last night and this morning by telling me I don't understand and that I must hate him as I insist on him doing his treatments. I was wondering if anyone else has been down this path? It rips my heart out to have him scream at me, or tell me he wishes he was dead. <div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Thanks in advance or any and all advice.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Jeff Wise<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Father of Parker (Df508/p.R347P) age 12
 
L

Liza

New member
I am so sorry your son, and your family are going through this. I know from personal experience that this does break your heart into a million pieces when you hear them sound as if they have given up. I can not relate on what he is going through having been diagnosed at such a crucial age, I can only imagine from similar experience. I'm sorry I can not offer much help on how to deal with his emotions and his non interest in getting out there and doing things he used to love doing. All I can say is to listen to him, try to understand how devestating this is to him, although I am sure you are doing all this already. There are no words to make him feel better, he can't see how good he has it right now (your reference to an easier path than most CF'ers), all he see's is that his life has been shortened and that he doesn't want to deal with what may happen. At 12, he has probably looked up CF on his own. It's a scary thing, the internet.

Was the dehydration the only thing that lead to him being tested? Was he having or did he have a history of frequent infections? Bronchitis, Pneumonia, GI issues? Did he have trouble keeping up, shortness of breathe?

My only suggestion is to keep on telling him how important it is to keep being active. That is what is going to help the meds help him. Keeping his lungs as healthy as possible and fighting it every step of the way. Find people that have accomplished so much by keeping active. There are CF'ers out there that run, bike, play football, swim. If you can get in contact with Robert321, I've not seen him on the boards lately but he's a moderator on here. Robert was diagnosed as a teen. He continued in the marching band playing multiple wind instuments. It's people like Robert that he needs to talk to. Also, the child life specialist at your clinic.

Hugs across cyberspace for you all.
 
L

Liza

New member
I am so sorry your son, and your family are going through this. I know from personal experience that this does break your heart into a million pieces when you hear them sound as if they have given up. I can not relate on what he is going through having been diagnosed at such a crucial age, I can only imagine from similar experience. I'm sorry I can not offer much help on how to deal with his emotions and his non interest in getting out there and doing things he used to love doing. All I can say is to listen to him, try to understand how devestating this is to him, although I am sure you are doing all this already. There are no words to make him feel better, he can't see how good he has it right now (your reference to an easier path than most CF'ers), all he see's is that his life has been shortened and that he doesn't want to deal with what may happen. At 12, he has probably looked up CF on his own. It's a scary thing, the internet.

Was the dehydration the only thing that lead to him being tested? Was he having or did he have a history of frequent infections? Bronchitis, Pneumonia, GI issues? Did he have trouble keeping up, shortness of breathe?

My only suggestion is to keep on telling him how important it is to keep being active. That is what is going to help the meds help him. Keeping his lungs as healthy as possible and fighting it every step of the way. Find people that have accomplished so much by keeping active. There are CF'ers out there that run, bike, play football, swim. If you can get in contact with Robert321, I've not seen him on the boards lately but he's a moderator on here. Robert was diagnosed as a teen. He continued in the marching band playing multiple wind instuments. It's people like Robert that he needs to talk to. Also, the child life specialist at your clinic.

Hugs across cyberspace for you all.
 
L

Liza

New member
I am so sorry your son, and your family are going through this. I know from personal experience that this does break your heart into a million pieces when you hear them sound as if they have given up. I can not relate on what he is going through having been diagnosed at such a crucial age, I can only imagine from similar experience. I'm sorry I can not offer much help on how to deal with his emotions and his non interest in getting out there and doing things he used to love doing. All I can say is to listen to him, try to understand how devestating this is to him, although I am sure you are doing all this already. There are no words to make him feel better, he can't see how good he has it right now (your reference to an easier path than most CF'ers), all he see's is that his life has been shortened and that he doesn't want to deal with what may happen. At 12, he has probably looked up CF on his own. It's a scary thing, the internet.
<br />
<br />Was the dehydration the only thing that lead to him being tested? Was he having or did he have a history of frequent infections? Bronchitis, Pneumonia, GI issues? Did he have trouble keeping up, shortness of breathe?
<br />
<br />My only suggestion is to keep on telling him how important it is to keep being active. That is what is going to help the meds help him. Keeping his lungs as healthy as possible and fighting it every step of the way. Find people that have accomplished so much by keeping active. There are CF'ers out there that run, bike, play football, swim. If you can get in contact with Robert321, I've not seen him on the boards lately but he's a moderator on here. Robert was diagnosed as a teen. He continued in the marching band playing multiple wind instuments. It's people like Robert that he needs to talk to. Also, the child life specialist at your clinic.
<br />
<br />Hugs across cyberspace for you all.
<br />
 
B

Brad

New member
My Oldest Brother was not DX until He was 19, My Mother
<br> was pushing Docs to test Him and my self for years..
<br><br> I guess I should have added that I was 8 yrs old when DX.<br>
<br>
 
B

Brad

New member
My Oldest Brother was not DX until He was 19, My Mother
<br> was pushing Docs to test Him and my self for years..
<br><br>I guess I should have added that I was 8 yrs old when DX.<br>
<br>
 
B

Brad

New member
My Oldest Brother was not DX until He was 19, My Mother
<br> was pushing Docs to test Him and my self for years..
<br><br>I guess I should have added that I was 8 yrs old when DX.<br>
<br>
 
J

JennifersHope

New member
That is a lot of a preteen to take in. It sounds like he is depressed. I would maybe hook him up on the Cystic Fibrosis Foundation page, I think they have a link for teens there. I would also find other avenues for him to express his fears and concerns, maybe therapy.

He most likely is afraid he is going to die and doesn't see the point in trying. He does not have the communication skills of an adult, and even most adults don't have the best communication skills to express how they are feeling.

I was wrongly diagnosed at the age of 29, and undiagnosed at the age of 38. However, when I was diagnosed I was a very highly functioning adult in a very serious relationship. I canceled my retirement plan, cashed out my 401k and did some other foolish things.

Though I continued on and decided it was not going to beat me, I went to nursing school, it was very traumatizing for me to be diagnosed as an adult.

I would not allow him to use his CF as an excuse to quit doing sports or other things, I would encourage him to keep up with it and not treat him any different, but I would also try to allow him as many opportunities as possible to express his concerns, his disappointment in having to do treatments.. (even two times a day may not seem like a lot to you but to a pre teen boy who is trying to fit in with his peers and does not want to stand out) it is a big deal. I hated doing the vest, I was not used to it, I felt stupid and it took a lot of time I was use to having to myself.

I of course did it, and I didn't complain but I was much older... Being a pre teen is so hard, everything is so huge about appearance, fitting in, and being accepted, I would give him a lot of grace and yet not let him quit.. Sounds impossible I know.

If he is on facebook, I highly encourage him to friend Jerry Cahill who is 55 years old and credits sports and his family pushing him with sports for the reason he is alive today. Jerry has a new book coming out in early October that I was lucky enough to read a rough draft of and I highly recommend getting it for him as well... It will show him how he can too have a normal as normal can be with CF life and thrive through it.

Hang in there, things will turn around, you sound very well educated and I am sure you will stick by his side as he works this out.
 
J

JennifersHope

New member
That is a lot of a preteen to take in. It sounds like he is depressed. I would maybe hook him up on the Cystic Fibrosis Foundation page, I think they have a link for teens there. I would also find other avenues for him to express his fears and concerns, maybe therapy.

He most likely is afraid he is going to die and doesn't see the point in trying. He does not have the communication skills of an adult, and even most adults don't have the best communication skills to express how they are feeling.

I was wrongly diagnosed at the age of 29, and undiagnosed at the age of 38. However, when I was diagnosed I was a very highly functioning adult in a very serious relationship. I canceled my retirement plan, cashed out my 401k and did some other foolish things.

Though I continued on and decided it was not going to beat me, I went to nursing school, it was very traumatizing for me to be diagnosed as an adult.

I would not allow him to use his CF as an excuse to quit doing sports or other things, I would encourage him to keep up with it and not treat him any different, but I would also try to allow him as many opportunities as possible to express his concerns, his disappointment in having to do treatments.. (even two times a day may not seem like a lot to you but to a pre teen boy who is trying to fit in with his peers and does not want to stand out) it is a big deal. I hated doing the vest, I was not used to it, I felt stupid and it took a lot of time I was use to having to myself.

I of course did it, and I didn't complain but I was much older... Being a pre teen is so hard, everything is so huge about appearance, fitting in, and being accepted, I would give him a lot of grace and yet not let him quit.. Sounds impossible I know.

If he is on facebook, I highly encourage him to friend Jerry Cahill who is 55 years old and credits sports and his family pushing him with sports for the reason he is alive today. Jerry has a new book coming out in early October that I was lucky enough to read a rough draft of and I highly recommend getting it for him as well... It will show him how he can too have a normal as normal can be with CF life and thrive through it.

Hang in there, things will turn around, you sound very well educated and I am sure you will stick by his side as he works this out.
 
J

JennifersHope

New member
That is a lot of a preteen to take in. It sounds like he is depressed. I would maybe hook him up on the Cystic Fibrosis Foundation page, I think they have a link for teens there. I would also find other avenues for him to express his fears and concerns, maybe therapy.
<br />
<br />He most likely is afraid he is going to die and doesn't see the point in trying. He does not have the communication skills of an adult, and even most adults don't have the best communication skills to express how they are feeling.
<br />
<br />I was wrongly diagnosed at the age of 29, and undiagnosed at the age of 38. However, when I was diagnosed I was a very highly functioning adult in a very serious relationship. I canceled my retirement plan, cashed out my 401k and did some other foolish things.
<br />
<br />Though I continued on and decided it was not going to beat me, I went to nursing school, it was very traumatizing for me to be diagnosed as an adult.
<br />
<br />I would not allow him to use his CF as an excuse to quit doing sports or other things, I would encourage him to keep up with it and not treat him any different, but I would also try to allow him as many opportunities as possible to express his concerns, his disappointment in having to do treatments.. (even two times a day may not seem like a lot to you but to a pre teen boy who is trying to fit in with his peers and does not want to stand out) it is a big deal. I hated doing the vest, I was not used to it, I felt stupid and it took a lot of time I was use to having to myself.
<br />
<br />I of course did it, and I didn't complain but I was much older... Being a pre teen is so hard, everything is so huge about appearance, fitting in, and being accepted, I would give him a lot of grace and yet not let him quit.. Sounds impossible I know.
<br />
<br />If he is on facebook, I highly encourage him to friend Jerry Cahill who is 55 years old and credits sports and his family pushing him with sports for the reason he is alive today. Jerry has a new book coming out in early October that I was lucky enough to read a rough draft of and I highly recommend getting it for him as well... It will show him how he can too have a normal as normal can be with CF life and thrive through it.
<br />
<br />Hang in there, things will turn around, you sound very well educated and I am sure you will stick by his side as he works this out.
 
S

sdelorenzo

Guest
I am sorry to hear about all your family has been going through. I read a book called "Parenting Children with Health Issues and Special Needs: Love and Logic Essentials for Raising Happy, Healthier Kids" by Foster Kline and Lisa Greene. Lisa has two kids with CF and by the way comes to this site often. Anyway, the book addresses some similar issues that you are having with your son. It discusses how to talk to your children when it comes to their illness. I would highly recommend it. I would also maybe find some articles of those with CF who are in their 30's and 40's and who are doing some incredible things. I think they might be an encouragement to him to see what others with CF are accomplishing despite their diagnosis.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 10 months both without CF
 
S

sdelorenzo

Guest
I am sorry to hear about all your family has been going through. I read a book called "Parenting Children with Health Issues and Special Needs: Love and Logic Essentials for Raising Happy, Healthier Kids" by Foster Kline and Lisa Greene. Lisa has two kids with CF and by the way comes to this site often. Anyway, the book addresses some similar issues that you are having with your son. It discusses how to talk to your children when it comes to their illness. I would highly recommend it. I would also maybe find some articles of those with CF who are in their 30's and 40's and who are doing some incredible things. I think they might be an encouragement to him to see what others with CF are accomplishing despite their diagnosis.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 10 months both without CF
 
S

sdelorenzo

Guest
I am sorry to hear about all your family has been going through. I read a book called "Parenting Children with Health Issues and Special Needs: Love and Logic Essentials for Raising Happy, Healthier Kids" by Foster Kline and Lisa Greene. Lisa has two kids with CF and by the way comes to this site often. Anyway, the book addresses some similar issues that you are having with your son. It discusses how to talk to your children when it comes to their illness. I would highly recommend it. I would also maybe find some articles of those with CF who are in their 30's and 40's and who are doing some incredible things. I think they might be an encouragement to him to see what others with CF are accomplishing despite their diagnosis.
<br />Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 10 months both without CF
 
J

jcwise62

Guest
Liza:<div><br></div><div>Thank you for the words of encouragement.  I agree the internet is a scary thing, and he is quite savvy about it's uses.  As for life shortening, I am trying to put that in perspective also.  I have played him the Jerry Cahill video's and had some facebook conversations with the man himself.  After all that he has been though and continues to do, he is the kind of role model I am hoping Parker will come around to emulate or at least respect.</div><div><br></div><div>As for prior to his dehydration issue at summer camp.  My wife has a very mild case of asthma and he would occasionally get shortness of breath, but it was maybe once a year.  His grandfather's on both sides of the family had GI issues, one with ulcers the other with colitis.  He has always avoided spicy food, but at 12 years old, 5'4" inches tall, and 110 lbs the failure to thrive was never an issue.  As I have told him, he is one of the more fortunate CFer's as he does not have to take medicine with every meal. </div><div><br></div><div>The clinic folk at the center are great.  We are currently seeing a wonderful therapist, it is just sometimes I have difficulty telling where the CF angst end's and the pre-teen begins.  </div><div><br></div><div>Thanks again for your words of encouragement, and I will send Robert321 a message.</div><div><br></div><div>Jeff</div><div>Dad to Parker age 12.</div><div><br></div>
 
J

jcwise62

Guest
Liza:<br>Thank you for the words of encouragement. I agree the internet is a scary thing, and he is quite savvy about it's uses. As for life shortening, I am trying to put that in perspective also. I have played him the Jerry Cahill video's and had some facebook conversations with the man himself. After all that he has been though and continues to do, he is the kind of role model I am hoping Parker will come around to emulate or at least respect.<br>As for prior to his dehydration issue at summer camp. My wife has a very mild case of asthma and he would occasionally get shortness of breath, but it was maybe once a year. His grandfather's on both sides of the family had GI issues, one with ulcers the other with colitis. He has always avoided spicy food, but at 12 years old, 5'4" inches tall, and 110 lbs the failure to thrive was never an issue. As I have told him, he is one of the more fortunate CFer's as he does not have to take medicine with every meal.<br>The clinic folk at the center are great. We are currently seeing a wonderful therapist, it is just sometimes I have difficulty telling where the CF angst end's and the pre-teen begins. <br>Thanks again for your words of encouragement, and I will send Robert321 a message.<br>JeffDad to Parker age 12.<br>
 
J

jcwise62

Guest
Liza:<br>Thank you for the words of encouragement. I agree the internet is a scary thing, and he is quite savvy about it's uses. As for life shortening, I am trying to put that in perspective also. I have played him the Jerry Cahill video's and had some facebook conversations with the man himself. After all that he has been though and continues to do, he is the kind of role model I am hoping Parker will come around to emulate or at least respect.<br>As for prior to his dehydration issue at summer camp. My wife has a very mild case of asthma and he would occasionally get shortness of breath, but it was maybe once a year. His grandfather's on both sides of the family had GI issues, one with ulcers the other with colitis. He has always avoided spicy food, but at 12 years old, 5'4" inches tall, and 110 lbs the failure to thrive was never an issue. As I have told him, he is one of the more fortunate CFer's as he does not have to take medicine with every meal.<br>The clinic folk at the center are great. We are currently seeing a wonderful therapist, it is just sometimes I have difficulty telling where the CF angst end's and the pre-teen begins. <br>Thanks again for your words of encouragement, and I will send Robert321 a message.<br>JeffDad to Parker age 12.<br>
 
J

jcwise62

Guest
Brad:<div><br></div><div>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.  </div><div><br></div><div>Thanks for the information.  </div><div><br></div><div>Jeff</div>
 
J

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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