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New and looking for guidance
- Thread starter Jamaca59
- Start date
<a target=new class=ftalternatingbarlinklarge href="http://www.hemophiliagalaxy.com/patients/growing/adulthood/letgo.html
">http://www.hemophiliagalaxy.com/patients/growing/adulthood/letgo.html
</a><a target=new class=ftalternatingbarlinklarge href="http://teenagerstoday.com/resources/articles/lettinggo.htm
">http://teenagerstoday.com/resources/articles/lettinggo.htm
</a>about the last one. I wonder if some parents of a kid with CF
have seen their role as "preparing the child to leave the house".
I wonder if they haven't seen their role as "ensuring they live to adulthood" period.
If it is the latter then the whole idea of their child (even as adult) being the one to make the decisions for themselves and being able to live independently is just plain freaky scarey -- and maybe not even a goal that the parent is ready to embrace.
In that case, counseling for the parent might help.
">http://www.hemophiliagalaxy.com/patients/growing/adulthood/letgo.html
</a><a target=new class=ftalternatingbarlinklarge href="http://teenagerstoday.com/resources/articles/lettinggo.htm
">http://teenagerstoday.com/resources/articles/lettinggo.htm
</a>about the last one. I wonder if some parents of a kid with CF
have seen their role as "preparing the child to leave the house".
I wonder if they haven't seen their role as "ensuring they live to adulthood" period.
If it is the latter then the whole idea of their child (even as adult) being the one to make the decisions for themselves and being able to live independently is just plain freaky scarey -- and maybe not even a goal that the parent is ready to embrace.
In that case, counseling for the parent might help.
<a target=new class=ftalternatingbarlinklarge href="http://www.hemophiliagalaxy.com/patients/growing/adulthood/letgo.html
">http://www.hemophiliagalaxy.com/patients/growing/adulthood/letgo.html
</a><a target=new class=ftalternatingbarlinklarge href="http://teenagerstoday.com/resources/articles/lettinggo.htm
">http://teenagerstoday.com/resources/articles/lettinggo.htm
</a>about the last one. I wonder if some parents of a kid with CF
have seen their role as "preparing the child to leave the house".
I wonder if they haven't seen their role as "ensuring they live to adulthood" period.
If it is the latter then the whole idea of their child (even as adult) being the one to make the decisions for themselves and being able to live independently is just plain freaky scarey -- and maybe not even a goal that the parent is ready to embrace.
In that case, counseling for the parent might help.
">http://www.hemophiliagalaxy.com/patients/growing/adulthood/letgo.html
</a><a target=new class=ftalternatingbarlinklarge href="http://teenagerstoday.com/resources/articles/lettinggo.htm
">http://teenagerstoday.com/resources/articles/lettinggo.htm
</a>about the last one. I wonder if some parents of a kid with CF
have seen their role as "preparing the child to leave the house".
I wonder if they haven't seen their role as "ensuring they live to adulthood" period.
If it is the latter then the whole idea of their child (even as adult) being the one to make the decisions for themselves and being able to live independently is just plain freaky scarey -- and maybe not even a goal that the parent is ready to embrace.
In that case, counseling for the parent might help.
I bookmarked those articles to read later. Your comment about preparing the child... is a good one. We tend to be completely consumed with caring for our boys' cf and in doing so I'm sure we are keeping them from building those survival skills necessary to prepare them for life.
Good point about the counseling too.
Good point about the counseling too.
I bookmarked those articles to read later. Your comment about preparing the child... is a good one. We tend to be completely consumed with caring for our boys' cf and in doing so I'm sure we are keeping them from building those survival skills necessary to prepare them for life.
Good point about the counseling too.
Good point about the counseling too.
thelizardqueen
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Seems be going round in circles and it is freakin me out cos I'm worried that if we don't get rid soon, she might have to have IVs and she is at a very difficult age! Have you got any advice.
Thanks.
Charlotte<img src="i/expressions/oxygen.gif" border="0"><hr></blockquote>
Hate to say this, but you can never get rid of pseudo. Its not a death sentence - every person with CF will eventually culture it. I've cultured pseudo now for 16 years, and have only been on IVs once for it. I would be careful when its comes to IVs. I would worry about your child becoming resistant to IVs drugs so early on in life. Inhaled TOBI or Colymycin will work, as will oral Cirpo, but the pseudo will never go away. It may become "dormate" - which means it goes to sleep, but you will never get rid of it.
As far as parents letting go of their adult children. Its hard. I'm 24 years old, and my mum still nags me about treatments, my health, etc, even though I've been on my own and am doing great for the past 5 years. I'm thankful for her nagging though, as it means that she's in my corner with me, helping me fight. I find that my mum has let go a bit because I tell her to. She's realized that I'm not a child anymore, and I do tell her when she's nagging. There just comes a point where you realize this and have to step back a bit, or your child may become resentful. I found myself getting very angry when my mum was calling me up, telling me what to do about my health. Just make sure that you still make some sort of active role in her health, whether its just reminding her about her treatments, asking how she's doing, etc. I'm sorry that I haven't been much help - I'm just a kid who's grown up. I'm not the parent. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks.
Charlotte<img src="i/expressions/oxygen.gif" border="0"><hr></blockquote>
Hate to say this, but you can never get rid of pseudo. Its not a death sentence - every person with CF will eventually culture it. I've cultured pseudo now for 16 years, and have only been on IVs once for it. I would be careful when its comes to IVs. I would worry about your child becoming resistant to IVs drugs so early on in life. Inhaled TOBI or Colymycin will work, as will oral Cirpo, but the pseudo will never go away. It may become "dormate" - which means it goes to sleep, but you will never get rid of it.
As far as parents letting go of their adult children. Its hard. I'm 24 years old, and my mum still nags me about treatments, my health, etc, even though I've been on my own and am doing great for the past 5 years. I'm thankful for her nagging though, as it means that she's in my corner with me, helping me fight. I find that my mum has let go a bit because I tell her to. She's realized that I'm not a child anymore, and I do tell her when she's nagging. There just comes a point where you realize this and have to step back a bit, or your child may become resentful. I found myself getting very angry when my mum was calling me up, telling me what to do about my health. Just make sure that you still make some sort of active role in her health, whether its just reminding her about her treatments, asking how she's doing, etc. I'm sorry that I haven't been much help - I'm just a kid who's grown up. I'm not the parent. <img src="i/expressions/face-icon-small-smile.gif" border="0">
thelizardqueen
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Seems be going round in circles and it is freakin me out cos I'm worried that if we don't get rid soon, she might have to have IVs and she is at a very difficult age! Have you got any advice.
Thanks.
Charlotte<img src="i/expressions/oxygen.gif" border="0"><hr></blockquote>
Hate to say this, but you can never get rid of pseudo. Its not a death sentence - every person with CF will eventually culture it. I've cultured pseudo now for 16 years, and have only been on IVs once for it. I would be careful when its comes to IVs. I would worry about your child becoming resistant to IVs drugs so early on in life. Inhaled TOBI or Colymycin will work, as will oral Cirpo, but the pseudo will never go away. It may become "dormate" - which means it goes to sleep, but you will never get rid of it.
As far as parents letting go of their adult children. Its hard. I'm 24 years old, and my mum still nags me about treatments, my health, etc, even though I've been on my own and am doing great for the past 5 years. I'm thankful for her nagging though, as it means that she's in my corner with me, helping me fight. I find that my mum has let go a bit because I tell her to. She's realized that I'm not a child anymore, and I do tell her when she's nagging. There just comes a point where you realize this and have to step back a bit, or your child may become resentful. I found myself getting very angry when my mum was calling me up, telling me what to do about my health. Just make sure that you still make some sort of active role in her health, whether its just reminding her about her treatments, asking how she's doing, etc. I'm sorry that I haven't been much help - I'm just a kid who's grown up. I'm not the parent. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks.
Charlotte<img src="i/expressions/oxygen.gif" border="0"><hr></blockquote>
Hate to say this, but you can never get rid of pseudo. Its not a death sentence - every person with CF will eventually culture it. I've cultured pseudo now for 16 years, and have only been on IVs once for it. I would be careful when its comes to IVs. I would worry about your child becoming resistant to IVs drugs so early on in life. Inhaled TOBI or Colymycin will work, as will oral Cirpo, but the pseudo will never go away. It may become "dormate" - which means it goes to sleep, but you will never get rid of it.
As far as parents letting go of their adult children. Its hard. I'm 24 years old, and my mum still nags me about treatments, my health, etc, even though I've been on my own and am doing great for the past 5 years. I'm thankful for her nagging though, as it means that she's in my corner with me, helping me fight. I find that my mum has let go a bit because I tell her to. She's realized that I'm not a child anymore, and I do tell her when she's nagging. There just comes a point where you realize this and have to step back a bit, or your child may become resentful. I found myself getting very angry when my mum was calling me up, telling me what to do about my health. Just make sure that you still make some sort of active role in her health, whether its just reminding her about her treatments, asking how she's doing, etc. I'm sorry that I haven't been much help - I'm just a kid who's grown up. I'm not the parent. <img src="i/expressions/face-icon-small-smile.gif" border="0">