I hate CF

[rubyroselee]

Hi Tom,
<br />
<br />I'm so sorry to hear about M's troubles. It's so unfair that he has so many issues to deal with. I'm sure it is particularly hard for M to deal with the major health issues when he has such a hard time with his social issues. My hope is that you, your family, and M can find peace and balance and that his issues can get under control soon. Just keep fighting for him and that is all you can do.

 

[dasjsmum]

Tom, really sorry to hear this bad news. Keep the faith, tomorrow is another day, prayers to you all and hoping something turns your way xxx

 

[dasjsmum]

Tom, really sorry to hear this bad news. Keep the faith, tomorrow is another day, prayers to you all and hoping something turns your way xxx

 

[dasjsmum]

Tom, really sorry to hear this bad news. Keep the faith, tomorrow is another day, prayers to you all and hoping something turns your way xxx

 

[hmw]

I'm so sorry, Tom. It is INCREDIBLY difficult to cope with severe neurological, psychiatric and other similar illness/chronic conditions on their own, nevermind combined with a disease like cystic fibrosis. I could never claim to truly understand the road you are traveling right now but I can empathize with your (and your family's- and M's) struggle right now based on personal experience. My heart hurts for you.

M was really dealt a raw hand and having to cope with so much right now is just so incredibly unfair. So please do not apologize for venting. It is so hard. I understand there are no easy, fast solutions. It is my hope that you are able to balance all of his needs and find effective help and therapy to enable him to tolerate what he needs to do next in improving his physical health as much as possible.

 

[hmw]

I'm so sorry, Tom. It is INCREDIBLY difficult to cope with severe neurological, psychiatric and other similar illness/chronic conditions on their own, nevermind combined with a disease like cystic fibrosis. I could never claim to truly understand the road you are traveling right now but I can empathize with your (and your family's- and M's) struggle right now based on personal experience. My heart hurts for you.

M was really dealt a raw hand and having to cope with so much right now is just so incredibly unfair. So please do not apologize for venting. It is so hard. I understand there are no easy, fast solutions. It is my hope that you are able to balance all of his needs and find effective help and therapy to enable him to tolerate what he needs to do next in improving his physical health as much as possible.

 

[hmw]

I'm so sorry, Tom. It is INCREDIBLY difficult to cope with severe neurological, psychiatric and other similar illness/chronic conditions on their own, nevermind combined with a disease like cystic fibrosis. I could never claim to truly understand the road you are traveling right now but I can empathize with your (and your family's- and M's) struggle right now based on personal experience. My heart hurts for you.
<br />
<br />M was really dealt a raw hand and having to cope with so much right now is just so incredibly unfair. So please do not apologize for venting. It is so hard. I understand there are no easy, fast solutions. It is my hope that you are able to balance all of his needs and find effective help and therapy to enable him to tolerate what he needs to do next in improving his physical health as much as possible.

 

[Beccamom]

Wow! I don't know your whole story, but I have vented here many times and give way more credit to the parents on this forum than any specialist my daughter has seen in her 11 years for the current improvement in her health. I don't know where you live, but is it possible for your to have a behavior therapist come with you to your doctor visits and be part of your team. It doesn't seem fair to your son to have to wait on further CF treatment to get his Autism under control. I am just training to be a behavior therapist now and so I am by no means an expect. Maybe you can find a board certified behavior analyst.

On the website <A HREF="http://www.bacb.com/">http://www.bacb.com/</A> there is a page for consumers and it lists people who are certified. For insurance sake it may help to find a BCBA-D because some insurance will cover a psychologist, but not BCBA with a master's degree.

It seems like you need help with your child in your day to day life and it may greatly improve his health. I wish you the best and I cannot imagine what you are going through.

 

[Beccamom]

Wow! I don't know your whole story, but I have vented here many times and give way more credit to the parents on this forum than any specialist my daughter has seen in her 11 years for the current improvement in her health. I don't know where you live, but is it possible for your to have a behavior therapist come with you to your doctor visits and be part of your team. It doesn't seem fair to your son to have to wait on further CF treatment to get his Autism under control. I am just training to be a behavior therapist now and so I am by no means an expect. Maybe you can find a board certified behavior analyst.

On the website <A HREF="http://www.bacb.com/">http://www.bacb.com/</A> there is a page for consumers and it lists people who are certified. For insurance sake it may help to find a BCBA-D because some insurance will cover a psychologist, but not BCBA with a master's degree.

It seems like you need help with your child in your day to day life and it may greatly improve his health. I wish you the best and I cannot imagine what you are going through.

 

[Beccamom]

Wow! I don't know your whole story, but I have vented here many times and give way more credit to the parents on this forum than any specialist my daughter has seen in her 11 years for the current improvement in her health. I don't know where you live, but is it possible for your to have a behavior therapist come with you to your doctor visits and be part of your team. It doesn't seem fair to your son to have to wait on further CF treatment to get his Autism under control. I am just training to be a behavior therapist now and so I am by no means an expect. Maybe you can find a board certified behavior analyst.
<br />
<br />On the website <A HREF="http://www.bacb.com/">http://www.bacb.com/</A> there is a page for consumers and it lists people who are certified. For insurance sake it may help to find a BCBA-D because some insurance will cover a psychologist, but not BCBA with a master's degree.
<br />
<br />It seems like you need help with your child in your day to day life and it may greatly improve his health. I wish you the best and I cannot imagine what you are going through.

 

[just1more]

Thank you all for your support, he is back home and had a pretty good day today.
<br>
<br>As you all know some days are better than others, and sometimes otherwise not surprising news catches you off guard.
<br>
<br>Becca's mom, thank you for the suggestion. While it is not associated with his clinic, we have worked with therapists at different points. Probably the biggest two 'CF' issues we have with the autism is getting him to eat (but g-tube deals with that) and that he won't cooperate during treatments. It is the 2nd one that is causing issues at the moment, and it is hard to make someone cough up gunk that doesn't want to <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br>
<br>Oh well, such is life.
<br>
<br>Thank you all again,

 

[just1more]

Thank you all for your support, he is back home and had a pretty good day today.
<br>
<br>As you all know some days are better than others, and sometimes otherwise not surprising news catches you off guard.
<br>
<br>Becca's mom, thank you for the suggestion. While it is not associated with his clinic, we have worked with therapists at different points. Probably the biggest two 'CF' issues we have with the autism is getting him to eat (but g-tube deals with that) and that he won't cooperate during treatments. It is the 2nd one that is causing issues at the moment, and it is hard to make someone cough up gunk that doesn't want to <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br>
<br>Oh well, such is life.
<br>
<br>Thank you all again,

 

[just1more]

Thank you all for your support, he is back home and had a pretty good day today.
<br>
<br>As you all know some days are better than others, and sometimes otherwise not surprising news catches you off guard.
<br>
<br>Becca's mom, thank you for the suggestion. While it is not associated with his clinic, we have worked with therapists at different points. Probably the biggest two 'CF' issues we have with the autism is getting him to eat (but g-tube deals with that) and that he won't cooperate during treatments. It is the 2nd one that is causing issues at the moment, and it is hard to make someone cough up gunk that doesn't want to <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br>
<br>Oh well, such is life.
<br>
<br>Thank you all again,

 

[JORDYSMOM]

<P>Sorry you guys are going through so much.  I can't even imagine your frustration.  I'll be praying. </P>
<P> </P>
<P>Stacey</P>

 

[JORDYSMOM]

<P>Sorry you guys are going through so much. I can't even imagine your frustration. I'll be praying. </P>
<P></P>
<P>Stacey</P>

 

[JORDYSMOM]

<P><BR>Sorry you guys are going through so much. I can't even imagine your frustration. I'll be praying. </P>
<P></P>
<P>Stacey</P>