So discouraged- UPDATE

T

theLostMiler

New member
So discouraged!

yea i would suggest hts. has he tried old school mucomyst?
<br />he used to grow an NTM right? could it be in there and not showing up on cultures?
<br />
<br />I hate reading this because its discouraging and scary. I hope you find an answer or a suggestion that is the solution!
 
S

Shine

Member
So discouraged!

Hey Jane,

So sorry to hear that Josh is not doing so well at the moment <img src="i/expressions/face-icon-small-sad.gif" border="0">

Just a thought though...does Josh have a bad asthma on top of the cf side of things, I ask this b/c I know I do and somw years can be different to others. I cannot tolerate Tobra either, as it really upsets my asthma and so does Colistin! Which kinda sucks...but that's how it is for me! :/

Also someone meantioned to me a while back that HTS taken with 3% is sometimes the way to go when it comes to getting tightness in the chest etc, So maybe that night be something to look into next time with the c.f Doc..?

Anyway that's my 2 cents! lol

Really hope things get better for Josh,

Take care,
Hugs, Sarah xx
 
S

Shine

Member
So discouraged!

Hey Jane,

So sorry to hear that Josh is not doing so well at the moment <img src="i/expressions/face-icon-small-sad.gif" border="0">

Just a thought though...does Josh have a bad asthma on top of the cf side of things, I ask this b/c I know I do and somw years can be different to others. I cannot tolerate Tobra either, as it really upsets my asthma and so does Colistin! Which kinda sucks...but that's how it is for me! :/

Also someone meantioned to me a while back that HTS taken with 3% is sometimes the way to go when it comes to getting tightness in the chest etc, So maybe that night be something to look into next time with the c.f Doc..?

Anyway that's my 2 cents! lol

Really hope things get better for Josh,

Take care,
Hugs, Sarah xx
 
S

Shine

Member
So discouraged!

Hey Jane,
<br />
<br />So sorry to hear that Josh is not doing so well at the moment <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Just a thought though...does Josh have a bad asthma on top of the cf side of things, I ask this b/c I know I do and somw years can be different to others. I cannot tolerate Tobra either, as it really upsets my asthma and so does Colistin! Which kinda sucks...but that's how it is for me! :/
<br />
<br />Also someone meantioned to me a while back that HTS taken with 3% is sometimes the way to go when it comes to getting tightness in the chest etc, So maybe that night be something to look into next time with the c.f Doc..?
<br />
<br />Anyway that's my 2 cents! lol
<br />
<br />Really hope things get better for Josh,
<br />
<br />Take care,
<br />Hugs, Sarah xx
<br />
<br />
 
J

Jane

Digital opinion leader
<P>**Update. Both boys are coughing and tired this week. Its only been 2 weeks since Jess finished his IVs. I made appointments for clinic later in the week so we can figure out what to do. </P>
<P> </P>
<P>Thanks for all your suggestions. </P>
<P>They were feeling so great last week. We're all pretty sad tonight. </P>
 
J

Jane

Digital opinion leader
<P>**Update. Both boys are coughing and tired this week. Its only been 2 weeks since Jess finished his IVs. I made appointments for clinic later in the week so we can figure out what to do. </P>
<P></P>
<P>Thanks for all your suggestions. </P>
<P>They were feeling so great last week. We're all pretty sad tonight. </P>
 
J

Jane

Digital opinion leader
<P>**Update. <BR>Both boys are coughing and tired this week. Its only been 2 weeks since Jess finished his IVs. I made appointments for clinic later in the week so we can figure out what to do. </P>
<P></P>
<P>Thanks for all your suggestions. </P>
<P><BR>They were feeling so great last week. We're all pretty sad tonight. </P>
 
T

theLostMiler

New member
How are the allergies? Could it be increased pollen count etc? Maybe making them cough? I think I have been feeling more congested and inflammed due to the weather finally getting warm and now everything is in bloom.
 
T

theLostMiler

New member
How are the allergies? Could it be increased pollen count etc? Maybe making them cough? I think I have been feeling more congested and inflammed due to the weather finally getting warm and now everything is in bloom.
 
T

theLostMiler

New member
How are the allergies? Could it be increased pollen count etc? Maybe making them cough? I think I have been feeling more congested and inflammed due to the weather finally getting warm and now everything is in bloom.
 
J

Jane

Digital opinion leader
Yes, that is definitely a consideration. They both have mold allergies too and we've had so much rain lately. We'll bring that up to the docs too!
 
J

Jane

Digital opinion leader
Yes, that is definitely a consideration. They both have mold allergies too and we've had so much rain lately. We'll bring that up to the docs too!
 
J

Jane

Digital opinion leader
Yes, that is definitely a consideration. They both have mold allergies too and we've had so much rain lately. We'll bring that up to the docs too!
 
K

kmaried

New member
<P>Hi Jane,</P>
<P> </P>
<P>To me, tickly cough usually means something is dripping down from my sinuses that is causing the tickling.  I don't know much about Josh's history, but does he do sinus rinses?  Has he seen an ENT?  I did get sinus surgery to help prevent issues starting in my nose and going to my lungs.</P>
<P> </P>
<P>Also, just want to echo what everyone else has said.  Hydration helps, but tickly cough to me usually isn't related to dehydration.  Also, I love hypertonic saline, and I do have hemoptysis issues, but I think it's worth it... 3% might be a good idea.  Lastly, I was JUST today talking about how I used to be able to tell what my lung function was by how junky I was.  Now, it seems, I could have good pfts (well, for me, anyway) and I'm still so junky!  Frustrating, but I guess that's the way it goes...</P>
<P> </P>
<P>Good luck!Kris</P>
 
K

kmaried

New member
<P>Hi Jane,</P>
<P></P>
<P>To me, tickly cough usually means something is dripping down from my sinuses that is causing the tickling. I don't know much about Josh's history, but does he do sinus rinses? Has he seen an ENT? I did get sinus surgery to help prevent issues starting in my nose and going to my lungs.</P>
<P></P>
<P>Also, just want to echo what everyone else has said. Hydration helps, but tickly cough to me usually isn't related to dehydration. Also, I love hypertonic saline, and I do have hemoptysis issues, but I think it's worth it... 3% might be a good idea. Lastly, I was JUST today talking about how I used to be able to tell what my lung function was by how junky I was. Now, it seems, I could have good pfts (well, for me, anyway) and I'm still so junky! Frustrating, but I guess that's the way it goes...</P>
<P></P>
<P>Good luck!Kris</P>
 
K

kmaried

New member
<P><BR>Hi Jane,</P>
<P></P>
<P>To me, tickly cough usually means something is dripping down from my sinuses that is causing the tickling. I don't know much about Josh's history, but does he do sinus rinses? Has he seen an ENT? I did get sinus surgery to help prevent issues starting in my nose and going to my lungs.</P>
<P></P>
<P>Also, just want to echo what everyone else has said. Hydration helps, but tickly cough to me usually isn't related to dehydration. Also, I love hypertonic saline, and I do have hemoptysis issues, but I think it's worth it... 3% might be a good idea. Lastly, I was JUST today talking about how I used to be able to tell what my lung function was by how junky I was. Now, it seems, I could have good pfts (well, for me, anyway) and I'm still so junky! Frustrating, but I guess that's the way it goes...</P>
<P></P>
<P>Good luck!<BR>Kris</P>
 
F

farmfamily

New member
I could have written your post. My son 19 just finished Iv's 2 weeks ago, feeling good now coughing and feeling junky. I too am very discouraged as is he.

<br>
 
F

farmfamily

New member
I could have written your post. My son 19 just finished Iv's 2 weeks ago, feeling good now coughing and feeling junky. I too am very discouraged as is he.

<br>
 
F

farmfamily

New member
I could have written your post. My son 19 just finished Iv's 2 weeks ago, feeling good now coughing and feeling junky. I too am very discouraged as is he.

<br>
 
F

farmfamily

New member
I could have written your post. My son 19 just finished Iv's 2 weeks ago, feeling good now coughing and feeling junky. I too am very discouraged as is he.

<br>
 
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