clinic visit a nightmare

tbw18

New member
okay so we went to clinic today, our breathing test were lower than 4 weeks ago, our weight is down by 10 lbs, that is from the c-diff we didnt know about for two weeks, so we get into the room with the doc, he is really great with us but today i had so many questions, he begins by telling me that our IGE is 2800, and he feels like this too may be the cause of the lower fev, okay so now we are dealing with mycrobacterium abscessess and aspergillus, one has to be treated with different meds so it wont upset the other, we did cultures to see if the bacteria has come down from 3t well know on thursday, we will start predinsone tonight to fight the aspergillus and hope one doesnt upset the other. oh yea and the food group girl, comes and says oh we gotta get those 10lbs back on, so she got him to commit to 2 boost a day or more if he could and lots of extra calories are going to be needed to get that weight up he went from 156 to 146 in 4 weeks. thank god he did not shrink in height he is 6ft. he feels like crap on all this medicine, but I feel like the predinsone will get him eating hopefully. so thank you all who wrote to me last night and helped me, I did sleep better knowing we werent alone.

The Sun Rises and Sets in the Eyes of TBW
 

tbw18

New member
okay so we went to clinic today, our breathing test were lower than 4 weeks ago, our weight is down by 10 lbs, that is from the c-diff we didnt know about for two weeks, so we get into the room with the doc, he is really great with us but today i had so many questions, he begins by telling me that our IGE is 2800, and he feels like this too may be the cause of the lower fev, okay so now we are dealing with mycrobacterium abscessess and aspergillus, one has to be treated with different meds so it wont upset the other, we did cultures to see if the bacteria has come down from 3t well know on thursday, we will start predinsone tonight to fight the aspergillus and hope one doesnt upset the other. oh yea and the food group girl, comes and says oh we gotta get those 10lbs back on, so she got him to commit to 2 boost a day or more if he could and lots of extra calories are going to be needed to get that weight up he went from 156 to 146 in 4 weeks. thank god he did not shrink in height he is 6ft. he feels like crap on all this medicine, but I feel like the predinsone will get him eating hopefully. so thank you all who wrote to me last night and helped me, I did sleep better knowing we werent alone.

The Sun Rises and Sets in the Eyes of TBW
 

tbw18

New member
okay so we went to clinic today, our breathing test were lower than 4 weeks ago, our weight is down by 10 lbs, that is from the c-diff we didnt know about for two weeks, so we get into the room with the doc, he is really great with us but today i had so many questions, he begins by telling me that our IGE is 2800, and he feels like this too may be the cause of the lower fev, okay so now we are dealing with mycrobacterium abscessess and aspergillus, one has to be treated with different meds so it wont upset the other, we did cultures to see if the bacteria has come down from 3t well know on thursday, we will start predinsone tonight to fight the aspergillus and hope one doesnt upset the other. oh yea and the food group girl, comes and says oh we gotta get those 10lbs back on, so she got him to commit to 2 boost a day or more if he could and lots of extra calories are going to be needed to get that weight up he went from 156 to 146 in 4 weeks. thank god he did not shrink in height he is 6ft. he feels like crap on all this medicine, but I feel like the predinsone will get him eating hopefully. so thank you all who wrote to me last night and helped me, I did sleep better knowing we werent alone.

The Sun Rises and Sets in the Eyes of TBW
 

tbw18

New member
words cannot express how I feel about this site, what a great place to post and someone posts back who know exactly what you feel and what you are going through, I feel so blessed to have fallen into this site by accident one night, someone had a hand in it I believe. I know longer feel alone in my thoughts about my son and his cf, I know there are people out there who understand my sadness and my tears for him, so I will hide my broken heart behind a laughing face, and he will too will smile knowing that I am smiling and that we will be okay and somehow we will get past this, If I am okay it seems to make things okay for him, and he doesnt seem to worry as much and he tries to go on with life.




The Sun Rises And Sets In The Eyes Of TBW
 

tbw18

New member
words cannot express how I feel about this site, what a great place to post and someone posts back who know exactly what you feel and what you are going through, I feel so blessed to have fallen into this site by accident one night, someone had a hand in it I believe. I know longer feel alone in my thoughts about my son and his cf, I know there are people out there who understand my sadness and my tears for him, so I will hide my broken heart behind a laughing face, and he will too will smile knowing that I am smiling and that we will be okay and somehow we will get past this, If I am okay it seems to make things okay for him, and he doesnt seem to worry as much and he tries to go on with life.




The Sun Rises And Sets In The Eyes Of TBW
 

tbw18

New member
words cannot express how I feel about this site, what a great place to post and someone posts back who know exactly what you feel and what you are going through, I feel so blessed to have fallen into this site by accident one night, someone had a hand in it I believe. I know longer feel alone in my thoughts about my son and his cf, I know there are people out there who understand my sadness and my tears for him, so I will hide my broken heart behind a laughing face, and he will too will smile knowing that I am smiling and that we will be okay and somehow we will get past this, If I am okay it seems to make things okay for him, and he doesnt seem to worry as much and he tries to go on with life.




The Sun Rises And Sets In The Eyes Of TBW
 

JennifersHope

New member
Fear not Prednisone will for sure help your son to eat more....Sorry for all you are going through...

Keep posting and venting it helps so much

Jennifer
 

JennifersHope

New member
Fear not Prednisone will for sure help your son to eat more....Sorry for all you are going through...

Keep posting and venting it helps so much

Jennifer
 

JennifersHope

New member
Fear not Prednisone will for sure help your son to eat more....Sorry for all you are going through...

Keep posting and venting it helps so much

Jennifer
 

Emily65Roses

New member
If he resists the Boosts... try something else. I always hated the "weight shakes" they pushed on us. So frickin gross. Boost, Ensure, Scandishakes. All of them were disgusting. One of my favorites works almost as well, a nice Instant Breakfast (with whole milk for extra calories). That's just my suggestion. He may even love the Boost, but I always hated that crap, so I like to suggest the yummier solution. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
If he resists the Boosts... try something else. I always hated the "weight shakes" they pushed on us. So frickin gross. Boost, Ensure, Scandishakes. All of them were disgusting. One of my favorites works almost as well, a nice Instant Breakfast (with whole milk for extra calories). That's just my suggestion. He may even love the Boost, but I always hated that crap, so I like to suggest the yummier solution. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
If he resists the Boosts... try something else. I always hated the "weight shakes" they pushed on us. So frickin gross. Boost, Ensure, Scandishakes. All of them were disgusting. One of my favorites works almost as well, a nice Instant Breakfast (with whole milk for extra calories). That's just my suggestion. He may even love the Boost, but I always hated that crap, so I like to suggest the yummier solution. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JennifersHope

New member
Lisa a mom to one of the toddlers on here uses Carnation Instant Breakfast because it is less medicine like tasting and she uses "Creamy Milk" whole milk with a little Cream or Half and Half.... and her son gobbles it down..

Me I am on a high dose of pred right now and I am trying for all I am worth to stop eating...

Jennifer
 

JennifersHope

New member
Lisa a mom to one of the toddlers on here uses Carnation Instant Breakfast because it is less medicine like tasting and she uses "Creamy Milk" whole milk with a little Cream or Half and Half.... and her son gobbles it down..

Me I am on a high dose of pred right now and I am trying for all I am worth to stop eating...

Jennifer
 

JennifersHope

New member
Lisa a mom to one of the toddlers on here uses Carnation Instant Breakfast because it is less medicine like tasting and she uses "Creamy Milk" whole milk with a little Cream or Half and Half.... and her son gobbles it down..

Me I am on a high dose of pred right now and I am trying for all I am worth to stop eating...

Jennifer
 

kybert

New member
tbw, jens right lol. the prednisone will make your son eat everything in sight. even inedible objects become very appealling! your son sure does have a lot going on. hope he gets better soon.
 

kybert

New member
tbw, jens right lol. the prednisone will make your son eat everything in sight. even inedible objects become very appealling! your son sure does have a lot going on. hope he gets better soon.
 
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