blech, cough's back

dasjsmum · Aug 15, 2009

Umm TTL...sorry if you took my post to be rubbing salt into the wound...sorry you're struggling at the moment. I was just pointing out that it doesnt really matter what we do, or how hard we try, the cough always comes back.

We all deal with the same issues here. I have been where you are many times.Yes, his cough will get worse, all of the people on here with cf's coughs will get worse. Unfortunately, that is the nature of the beast.

I have struggled with this disease with my children for years. All parents on this board can sympathise with where you're at. If you have taken my post to be hurtful in some way, I apologise. We are all dealing with the same thing here, we are all in the same place that you are.

My son may not have autism, but he does have type 1 diabetes on top of his cf. That is a tragic thing for us to cope with. I'm sure I'm fully aware of the issues you have to deal with and can sympathise with you.

PS I sincerely hope your son gets better soon.

dasjsmum · Aug 15, 2009

Umm TTL...sorry if you took my post to be rubbing salt into the wound...sorry you're struggling at the moment. I was just pointing out that it doesnt really matter what we do, or how hard we try, the cough always comes back.

We all deal with the same issues here. I have been where you are many times.Yes, his cough will get worse, all of the people on here with cf's coughs will get worse. Unfortunately, that is the nature of the beast.

I have struggled with this disease with my children for years. All parents on this board can sympathise with where you're at. If you have taken my post to be hurtful in some way, I apologise. We are all dealing with the same thing here, we are all in the same place that you are.

My son may not have autism, but he does have type 1 diabetes on top of his cf. That is a tragic thing for us to cope with. I'm sure I'm fully aware of the issues you have to deal with and can sympathise with you.

PS I sincerely hope your son gets better soon.

dasjsmum · Aug 15, 2009

Umm TTL...sorry if you took my post to be rubbing salt into the wound...sorry you're struggling at the moment. I was just pointing out that it doesnt really matter what we do, or how hard we try, the cough always comes back.

We all deal with the same issues here. I have been where you are many times.Yes, his cough will get worse, all of the people on here with cf's coughs will get worse. Unfortunately, that is the nature of the beast.

I have struggled with this disease with my children for years. All parents on this board can sympathise with where you're at. If you have taken my post to be hurtful in some way, I apologise. We are all dealing with the same thing here, we are all in the same place that you are.

My son may not have autism, but he does have type 1 diabetes on top of his cf. That is a tragic thing for us to cope with. I'm sure I'm fully aware of the issues you have to deal with and can sympathise with you.

PS I sincerely hope your son gets better soon.

dasjsmum · Aug 15, 2009

Umm TTL...sorry if you took my post to be rubbing salt into the wound...sorry you're struggling at the moment. I was just pointing out that it doesnt really matter what we do, or how hard we try, the cough always comes back.

We all deal with the same issues here. I have been where you are many times.Yes, his cough will get worse, all of the people on here with cf's coughs will get worse. Unfortunately, that is the nature of the beast.

I have struggled with this disease with my children for years. All parents on this board can sympathise with where you're at. If you have taken my post to be hurtful in some way, I apologise. We are all dealing with the same thing here, we are all in the same place that you are.

My son may not have autism, but he does have type 1 diabetes on top of his cf. That is a tragic thing for us to cope with. I'm sure I'm fully aware of the issues you have to deal with and can sympathise with you.

PS I sincerely hope your son gets better soon.

dasjsmum · Aug 15, 2009

Umm TTL...sorry if you took my post to be rubbing salt into the wound...sorry you're struggling at the moment. I was just pointing out that it doesnt really matter what we do, or how hard we try, the cough always comes back.
 
 We all deal with the same issues here. I have been where you are many times.Yes, his cough will get worse, all of the people on here with cf's coughs will get worse. Unfortunately, that is the nature of the beast.
 
 I have struggled with this disease with my children for years. All parents on this board can sympathise with where you're at. If you have taken my post to be hurtful in some way, I apologise. We are all dealing with the same thing here, we are all in the same place that you are.
 
 My son may not have autism, but he does have type 1 diabetes on top of his cf. That is a tragic thing for us to cope with. I'm sure I'm fully aware of the issues you have to deal with and can sympathise with you.
 
 PS I sincerely hope your son gets better soon.

TestifyToLove · Aug 15, 2009

You know Jo, there's a very simple saying. If you don't have something nice to say, then don't say anything at all. Masking condescending tripe under passive-agressive psuedo-support is still not supportive.

So, if you understand because your child has Diabetes, then I'm sure you understand that feeling sick and change in routine are 2 non-aceptables to an Autistic. I'm sure you can immediately understand that the consequence of the vunerability and change in routine immediately results in day-long rages. And, I'm sure you understand that the stress immediately causes M to regression worse into his Austistic behaviors.

So, of course, you understand that M pooped himself 3 times yesterday and once already today. And, you would get that he trashed his bedroom and twice tried to assualt his father (of all people), that he has re-picked the nearly healed crater on his arm and fingerpainted the bathroom in his blood while waiting for someone to come clean the poop off of him. And, I'm sure you fully get that because his anxiey level is SO high because he is sick that he blew through 200mg of Seroquel and 6mg of melatonin and was up trying to rage every 45 minutes all night long.

Yup, you understand all of that because your son has diabetes and therefore you understand the nature of this beast.

Except...maybe...just maybe...the nature of OUR beast is just a wee bit more complicated than yours. And maybe I'd rather not scare the entire community with the reality of a child who causes both the Autism professionals and the CF professionals to back away slowly, tell me he's one of the most complicated cases they have seen and compliment me for how well we handle things as they make a quick exit from the room.

Oh, I forgot, you understand all that, right? Its no big deal. Just the nature of the beast afterall.

TestifyToLove · Aug 15, 2009

You know Jo, there's a very simple saying. If you don't have something nice to say, then don't say anything at all. Masking condescending tripe under passive-agressive psuedo-support is still not supportive.

So, if you understand because your child has Diabetes, then I'm sure you understand that feeling sick and change in routine are 2 non-aceptables to an Autistic. I'm sure you can immediately understand that the consequence of the vunerability and change in routine immediately results in day-long rages. And, I'm sure you understand that the stress immediately causes M to regression worse into his Austistic behaviors.

So, of course, you understand that M pooped himself 3 times yesterday and once already today. And, you would get that he trashed his bedroom and twice tried to assualt his father (of all people), that he has re-picked the nearly healed crater on his arm and fingerpainted the bathroom in his blood while waiting for someone to come clean the poop off of him. And, I'm sure you fully get that because his anxiey level is SO high because he is sick that he blew through 200mg of Seroquel and 6mg of melatonin and was up trying to rage every 45 minutes all night long.

Yup, you understand all of that because your son has diabetes and therefore you understand the nature of this beast.

Except...maybe...just maybe...the nature of OUR beast is just a wee bit more complicated than yours. And maybe I'd rather not scare the entire community with the reality of a child who causes both the Autism professionals and the CF professionals to back away slowly, tell me he's one of the most complicated cases they have seen and compliment me for how well we handle things as they make a quick exit from the room.

Oh, I forgot, you understand all that, right? Its no big deal. Just the nature of the beast afterall.

TestifyToLove · Aug 15, 2009

You know Jo, there's a very simple saying. If you don't have something nice to say, then don't say anything at all. Masking condescending tripe under passive-agressive psuedo-support is still not supportive.

So, if you understand because your child has Diabetes, then I'm sure you understand that feeling sick and change in routine are 2 non-aceptables to an Autistic. I'm sure you can immediately understand that the consequence of the vunerability and change in routine immediately results in day-long rages. And, I'm sure you understand that the stress immediately causes M to regression worse into his Austistic behaviors.

So, of course, you understand that M pooped himself 3 times yesterday and once already today. And, you would get that he trashed his bedroom and twice tried to assualt his father (of all people), that he has re-picked the nearly healed crater on his arm and fingerpainted the bathroom in his blood while waiting for someone to come clean the poop off of him. And, I'm sure you fully get that because his anxiey level is SO high because he is sick that he blew through 200mg of Seroquel and 6mg of melatonin and was up trying to rage every 45 minutes all night long.

Yup, you understand all of that because your son has diabetes and therefore you understand the nature of this beast.

Except...maybe...just maybe...the nature of OUR beast is just a wee bit more complicated than yours. And maybe I'd rather not scare the entire community with the reality of a child who causes both the Autism professionals and the CF professionals to back away slowly, tell me he's one of the most complicated cases they have seen and compliment me for how well we handle things as they make a quick exit from the room.

Oh, I forgot, you understand all that, right? Its no big deal. Just the nature of the beast afterall.

TestifyToLove · Aug 15, 2009

You know Jo, there's a very simple saying. If you don't have something nice to say, then don't say anything at all. Masking condescending tripe under passive-agressive psuedo-support is still not supportive.

So, if you understand because your child has Diabetes, then I'm sure you understand that feeling sick and change in routine are 2 non-aceptables to an Autistic. I'm sure you can immediately understand that the consequence of the vunerability and change in routine immediately results in day-long rages. And, I'm sure you understand that the stress immediately causes M to regression worse into his Austistic behaviors.

So, of course, you understand that M pooped himself 3 times yesterday and once already today. And, you would get that he trashed his bedroom and twice tried to assualt his father (of all people), that he has re-picked the nearly healed crater on his arm and fingerpainted the bathroom in his blood while waiting for someone to come clean the poop off of him. And, I'm sure you fully get that because his anxiey level is SO high because he is sick that he blew through 200mg of Seroquel and 6mg of melatonin and was up trying to rage every 45 minutes all night long.

Yup, you understand all of that because your son has diabetes and therefore you understand the nature of this beast.

Except...maybe...just maybe...the nature of OUR beast is just a wee bit more complicated than yours. And maybe I'd rather not scare the entire community with the reality of a child who causes both the Autism professionals and the CF professionals to back away slowly, tell me he's one of the most complicated cases they have seen and compliment me for how well we handle things as they make a quick exit from the room.

Oh, I forgot, you understand all that, right? Its no big deal. Just the nature of the beast afterall.

TestifyToLove · Aug 15, 2009

You know Jo, there's a very simple saying. If you don't have something nice to say, then don't say anything at all. Masking condescending tripe under passive-agressive psuedo-support is still not supportive.
 
 So, if you understand because your child has Diabetes, then I'm sure you understand that feeling sick and change in routine are 2 non-aceptables to an Autistic. I'm sure you can immediately understand that the consequence of the vunerability and change in routine immediately results in day-long rages. And, I'm sure you understand that the stress immediately causes M to regression worse into his Austistic behaviors.
 
 So, of course, you understand that M pooped himself 3 times yesterday and once already today. And, you would get that he trashed his bedroom and twice tried to assualt his father (of all people), that he has re-picked the nearly healed crater on his arm and fingerpainted the bathroom in his blood while waiting for someone to come clean the poop off of him. And, I'm sure you fully get that because his anxiey level is SO high because he is sick that he blew through 200mg of Seroquel and 6mg of melatonin and was up trying to rage every 45 minutes all night long.
 
 Yup, you understand all of that because your son has diabetes and therefore you understand the nature of this beast.
 
 Except...maybe...just maybe...the nature of OUR beast is just a wee bit more complicated than yours. And maybe I'd rather not scare the entire community with the reality of a child who causes both the Autism professionals and the CF professionals to back away slowly, tell me he's one of the most complicated cases they have seen and compliment me for how well we handle things as they make a quick exit from the room.
 
 Oh, I forgot, you understand all that, right? Its no big deal. Just the nature of the beast afterall.

LouLou · Aug 15, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: TestifyToLove
little lost boy who will never, ever understand why he has this and why he has to go through all of this to breath.</end quote></div>

FYI I have never thought of myself as this. Remember for M and I this is all we have ever known. Instead of being offended I can recognize differing viewpoints.

By the way I didn't read dajsmom response as hurtful but rather insightful from her broad exerience of cf. Personally I think most of us post on this site to share info. If you just want a shoulder to cry on then maybe you should say so as a disclosure in your post. I'm not meaning to sound b_itcy but rather we'd like to all support eachother to the best of our abilites.

Get better soon M. I love the tickling by the sibs idea!!

LouLou · Aug 15, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: TestifyToLove
little lost boy who will never, ever understand why he has this and why he has to go through all of this to breath.</end quote></div>

FYI I have never thought of myself as this. Remember for M and I this is all we have ever known. Instead of being offended I can recognize differing viewpoints.

By the way I didn't read dajsmom response as hurtful but rather insightful from her broad exerience of cf. Personally I think most of us post on this site to share info. If you just want a shoulder to cry on then maybe you should say so as a disclosure in your post. I'm not meaning to sound b_itcy but rather we'd like to all support eachother to the best of our abilites.

Get better soon M. I love the tickling by the sibs idea!!

LouLou · Aug 15, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: TestifyToLove
little lost boy who will never, ever understand why he has this and why he has to go through all of this to breath.</end quote></div>

FYI I have never thought of myself as this. Remember for M and I this is all we have ever known. Instead of being offended I can recognize differing viewpoints.

By the way I didn't read dajsmom response as hurtful but rather insightful from her broad exerience of cf. Personally I think most of us post on this site to share info. If you just want a shoulder to cry on then maybe you should say so as a disclosure in your post. I'm not meaning to sound b_itcy but rather we'd like to all support eachother to the best of our abilites.

Get better soon M. I love the tickling by the sibs idea!!

LouLou · Aug 15, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: TestifyToLove
little lost boy who will never, ever understand why he has this and why he has to go through all of this to breath.</end quote>

FYI I have never thought of myself as this. Remember for M and I this is all we have ever known. Instead of being offended I can recognize differing viewpoints.

By the way I didn't read dajsmom response as hurtful but rather insightful from her broad exerience of cf. Personally I think most of us post on this site to share info. If you just want a shoulder to cry on then maybe you should say so as a disclosure in your post. I'm not meaning to sound b_itcy but rather we'd like to all support eachother to the best of our abilites.

Get better soon M. I love the tickling by the sibs idea!!

LouLou · Aug 15, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: TestifyToLove
 little lost boy who will never, ever understand why he has this and why he has to go through all of this to breath.</end quote>
 
 FYI I have never thought of myself as this. Remember for M and I this is all we have ever known. Instead of being offended I can recognize differing viewpoints.
 
 By the way I didn't read dajsmom response as hurtful but rather insightful from her broad exerience of cf. Personally I think most of us post on this site to share info. If you just want a shoulder to cry on then maybe you should say so as a disclosure in your post. I'm not meaning to sound b_itcy but rather we'd like to all support eachother to the best of our abilites.
 
 Get better soon M. I love the tickling by the sibs idea!!

JazzysMom · Aug 15, 2009

OK MODERATOR WARNING IN PLACE

Passions are running high. We all have CF in common, but ability to handle things that come with it, no matter if autism, diabetes etc is involved, varies from CFer to CFer as well as the support system they have.

Sometimes when we try to console someone using a comparison to ourselves or someone else we know....to the person we are directing it to, there doesnt seem to be any comparison.

THAT being said......lets understand where both are coming from (as best as possible) & realize that unless you are living it yourself....people wont get it!

Reminder that words in print are left to interpretation in the tone. If this remains an issue....the thread will be locked.

We are all here for support so lets not let it get to that point!

JazzysMom · Aug 15, 2009

OK MODERATOR WARNING IN PLACE

Passions are running high. We all have CF in common, but ability to handle things that come with it, no matter if autism, diabetes etc is involved, varies from CFer to CFer as well as the support system they have.

Sometimes when we try to console someone using a comparison to ourselves or someone else we know....to the person we are directing it to, there doesnt seem to be any comparison.

THAT being said......lets understand where both are coming from (as best as possible) & realize that unless you are living it yourself....people wont get it!

Reminder that words in print are left to interpretation in the tone. If this remains an issue....the thread will be locked.

We are all here for support so lets not let it get to that point!

JazzysMom · Aug 15, 2009

OK MODERATOR WARNING IN PLACE

Passions are running high. We all have CF in common, but ability to handle things that come with it, no matter if autism, diabetes etc is involved, varies from CFer to CFer as well as the support system they have.

Sometimes when we try to console someone using a comparison to ourselves or someone else we know....to the person we are directing it to, there doesnt seem to be any comparison.

THAT being said......lets understand where both are coming from (as best as possible) & realize that unless you are living it yourself....people wont get it!

Reminder that words in print are left to interpretation in the tone. If this remains an issue....the thread will be locked.

We are all here for support so lets not let it get to that point!

JazzysMom · Aug 15, 2009

OK MODERATOR WARNING IN PLACE

Passions are running high. We all have CF in common, but ability to handle things that come with it, no matter if autism, diabetes etc is involved, varies from CFer to CFer as well as the support system they have.

Sometimes when we try to console someone using a comparison to ourselves or someone else we know....to the person we are directing it to, there doesnt seem to be any comparison.

THAT being said......lets understand where both are coming from (as best as possible) & realize that unless you are living it yourself....people wont get it!

Reminder that words in print are left to interpretation in the tone. If this remains an issue....the thread will be locked.

We are all here for support so lets not let it get to that point!

JazzysMom · Aug 15, 2009

OK MODERATOR WARNING IN PLACE
 
 Passions are running high. We all have CF in common, but ability to handle things that come with it, no matter if autism, diabetes etc is involved, varies from CFer to CFer as well as the support system they have.
 
 Sometimes when we try to console someone using a comparison to ourselves or someone else we know....to the person we are directing it to, there doesnt seem to be any comparison.
 
 THAT being said......lets understand where both are coming from (as best as possible) & realize that unless you are living it yourself....people wont get it!
 
 Reminder that words in print are left to interpretation in the tone. If this remains an issue....the thread will be locked.
 
 We are all here for support so lets not let it get to that point!

blech, cough's back

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