weight and IVs

M

Mommafirst

Guest
Alyssa is starting on week 3 of IVs. Here cough is minor, but still there. She is overall doing well, though. We haven't been using her feeding tube because her appetite has been sooooo great. And she is gaining without it. We stopped using it the day she went in for IVs and haven't added it back in (with the Docs OK, by the way). We've been trying to wean her for almost a year and everytime we've gone more than a few weeks her weight gets super sluggish. So I'm wondering if you ever see a weight surge during or just after IVs? Do you think that when we knock down the number of bugs she is fighting her body can gain on its own, and when they run rampant the weight slows? If that is the case, I don't know that we can ever get rid of the tube, because it seems we'll be always chasing some bug or another. I'd love to hear other's experiences with this. Thanks.
 
M

Mommafirst

Guest
Alyssa is starting on week 3 of IVs. Here cough is minor, but still there. She is overall doing well, though. We haven't been using her feeding tube because her appetite has been sooooo great. And she is gaining without it. We stopped using it the day she went in for IVs and haven't added it back in (with the Docs OK, by the way). We've been trying to wean her for almost a year and everytime we've gone more than a few weeks her weight gets super sluggish. So I'm wondering if you ever see a weight surge during or just after IVs? Do you think that when we knock down the number of bugs she is fighting her body can gain on its own, and when they run rampant the weight slows? If that is the case, I don't know that we can ever get rid of the tube, because it seems we'll be always chasing some bug or another. I'd love to hear other's experiences with this. Thanks.
 
M

Mommafirst

Guest
Alyssa is starting on week 3 of IVs. Here cough is minor, but still there. She is overall doing well, though. We haven't been using her feeding tube because her appetite has been sooooo great. And she is gaining without it. We stopped using it the day she went in for IVs and haven't added it back in (with the Docs OK, by the way). We've been trying to wean her for almost a year and everytime we've gone more than a few weeks her weight gets super sluggish. So I'm wondering if you ever see a weight surge during or just after IVs? Do you think that when we knock down the number of bugs she is fighting her body can gain on its own, and when they run rampant the weight slows? If that is the case, I don't know that we can ever get rid of the tube, because it seems we'll be always chasing some bug or another. I'd love to hear other's experiences with this. Thanks.
 
T

theLostMiler

New member
I find that after a while on ivs (I do long term b/c of m. abscessus usually) or about 3 weeks generally, my appetite comes up. I also feel best after a good long dose of ivs (if the abx side effects arent making me feel bad though).

Before ivs, the bugs are running rampant, and our bodies I think defensively shut down our appetite b/c its our bodies way of starving the bacteria, to try and kill it... well for us cfers that equates to about 5 lbs a day.

I often wonder if I'll ever get rid of my feeding tube too, I dont use it all the time (Mainly b/c the site pisses me off) and I alternate between using megace and the tube b/c I can definitely tell when I am having a flair up, b/c its like instantly my appetite is non existant, and the feeding tube doesnt increase my appetite (fast enough anyways) and it makes the daytime a struggle, so I end up using megace to get the belly stirring again.

I have a love hate relationship with megace, I love that everything sounds sooo good, and food is good again. I used to eat and eat and eat as a kid, once the m. abscessus took hold and being in college, my food intake went on the back burner and ever since I havent been able to recoup (spelling?) the loss of appetite.

well that was long, but my thoughts I guess...

Does she know she is possibly trying to get it out by kindergarten? If not, I wonder if she would have a problem keeping it until maybe even teenage years?

As much as I hate the tube and how my site can burn sometimes, I am glad I have it for if there is a time I really really need it, I mean, I need it now, but I wouldnt say its essential to live yet... but it probably will be eventually so I am glad I have it for those bad days for sure.
 
T

theLostMiler

New member
I find that after a while on ivs (I do long term b/c of m. abscessus usually) or about 3 weeks generally, my appetite comes up. I also feel best after a good long dose of ivs (if the abx side effects arent making me feel bad though).

Before ivs, the bugs are running rampant, and our bodies I think defensively shut down our appetite b/c its our bodies way of starving the bacteria, to try and kill it... well for us cfers that equates to about 5 lbs a day.

I often wonder if I'll ever get rid of my feeding tube too, I dont use it all the time (Mainly b/c the site pisses me off) and I alternate between using megace and the tube b/c I can definitely tell when I am having a flair up, b/c its like instantly my appetite is non existant, and the feeding tube doesnt increase my appetite (fast enough anyways) and it makes the daytime a struggle, so I end up using megace to get the belly stirring again.

I have a love hate relationship with megace, I love that everything sounds sooo good, and food is good again. I used to eat and eat and eat as a kid, once the m. abscessus took hold and being in college, my food intake went on the back burner and ever since I havent been able to recoup (spelling?) the loss of appetite.

well that was long, but my thoughts I guess...

Does she know she is possibly trying to get it out by kindergarten? If not, I wonder if she would have a problem keeping it until maybe even teenage years?

As much as I hate the tube and how my site can burn sometimes, I am glad I have it for if there is a time I really really need it, I mean, I need it now, but I wouldnt say its essential to live yet... but it probably will be eventually so I am glad I have it for those bad days for sure.
 
T

theLostMiler

New member
I find that after a while on ivs (I do long term b/c of m. abscessus usually) or about 3 weeks generally, my appetite comes up. I also feel best after a good long dose of ivs (if the abx side effects arent making me feel bad though).
<br />
<br />Before ivs, the bugs are running rampant, and our bodies I think defensively shut down our appetite b/c its our bodies way of starving the bacteria, to try and kill it... well for us cfers that equates to about 5 lbs a day.
<br />
<br />I often wonder if I'll ever get rid of my feeding tube too, I dont use it all the time (Mainly b/c the site pisses me off) and I alternate between using megace and the tube b/c I can definitely tell when I am having a flair up, b/c its like instantly my appetite is non existant, and the feeding tube doesnt increase my appetite (fast enough anyways) and it makes the daytime a struggle, so I end up using megace to get the belly stirring again.
<br />
<br />I have a love hate relationship with megace, I love that everything sounds sooo good, and food is good again. I used to eat and eat and eat as a kid, once the m. abscessus took hold and being in college, my food intake went on the back burner and ever since I havent been able to recoup (spelling?) the loss of appetite.
<br />
<br />well that was long, but my thoughts I guess...
<br />
<br />Does she know she is possibly trying to get it out by kindergarten? If not, I wonder if she would have a problem keeping it until maybe even teenage years?
<br />
<br />As much as I hate the tube and how my site can burn sometimes, I am glad I have it for if there is a time I really really need it, I mean, I need it now, but I wouldnt say its essential to live yet... but it probably will be eventually so I am glad I have it for those bad days for sure.
 
R

Rebjane

Super Moderator
Maggie's weight seems to be related to her bacteria load. When she was 2 1/2; and had heavy/moderate MRSA and coughing all the time she was on the 3% on growth charts. After she was treated with IV's and heavy anti's her weight improved immmensely.

When she loses weight, she seems to end up with a respiratory infection. For example, 2 winters in a row she ended up getting a bad stomach bug lost 4 pounds; had trouble gaining weight then ended up on Zyvox. Then eventually; she gained.

Right now, maggie is huge. 4 feet 2 inches and almost 70 pounds. She has an occasional cough right now since she got over her ear infection but she is due for a clinic visit after the new year, hopefully her culture will not show anything new.

As a side note one treatment that has also helped her gain weight is Hypertonic saline, sounds wierd but I remember when she started that her weight improved as well.
 
R

Rebjane

Super Moderator
Maggie's weight seems to be related to her bacteria load. When she was 2 1/2; and had heavy/moderate MRSA and coughing all the time she was on the 3% on growth charts. After she was treated with IV's and heavy anti's her weight improved immmensely.

When she loses weight, she seems to end up with a respiratory infection. For example, 2 winters in a row she ended up getting a bad stomach bug lost 4 pounds; had trouble gaining weight then ended up on Zyvox. Then eventually; she gained.

Right now, maggie is huge. 4 feet 2 inches and almost 70 pounds. She has an occasional cough right now since she got over her ear infection but she is due for a clinic visit after the new year, hopefully her culture will not show anything new.

As a side note one treatment that has also helped her gain weight is Hypertonic saline, sounds wierd but I remember when she started that her weight improved as well.
 
R

Rebjane

Super Moderator
Maggie's weight seems to be related to her bacteria load. When she was 2 1/2; and had heavy/moderate MRSA and coughing all the time she was on the 3% on growth charts. After she was treated with IV's and heavy anti's her weight improved immmensely.
<br />
<br />When she loses weight, she seems to end up with a respiratory infection. For example, 2 winters in a row she ended up getting a bad stomach bug lost 4 pounds; had trouble gaining weight then ended up on Zyvox. Then eventually; she gained.
<br />
<br />Right now, maggie is huge. 4 feet 2 inches and almost 70 pounds. She has an occasional cough right now since she got over her ear infection but she is due for a clinic visit after the new year, hopefully her culture will not show anything new.
<br />
<br />As a side note one treatment that has also helped her gain weight is Hypertonic saline, sounds wierd but I remember when she started that her weight improved as well.
 
H

hmw

New member
It makes sense to me that better health= better weight. They use SO many more calories on their respiratory function when they are sick, and probably an increased amount even when just fighting things off. As you know, the whole reason Emily needed the tube was due to how much she'd lose during illness and trouble recouping the loss on her own, not because she wasn't a good eater. IMO, I'd wait through however long it takes to get through several exacerbations and see how she does maintaining her weight (and gaining as time passes) without using the tube before deciding how to proceed.
 
H

hmw

New member
It makes sense to me that better health= better weight. They use SO many more calories on their respiratory function when they are sick, and probably an increased amount even when just fighting things off. As you know, the whole reason Emily needed the tube was due to how much she'd lose during illness and trouble recouping the loss on her own, not because she wasn't a good eater. IMO, I'd wait through however long it takes to get through several exacerbations and see how she does maintaining her weight (and gaining as time passes) without using the tube before deciding how to proceed.
 
H

hmw

New member
It makes sense to me that better health= better weight. They use SO many more calories on their respiratory function when they are sick, and probably an increased amount even when just fighting things off. As you know, the whole reason Emily needed the tube was due to how much she'd lose during illness and trouble recouping the loss on her own, not because she wasn't a good eater. IMO, I'd wait through however long it takes to get through several exacerbations and see how she does maintaining her weight (and gaining as time passes) without using the tube before deciding how to proceed.
 
M

mneville

Guest
Funny you say that...Aidan is big thanks to heavy whipping cream when he was a baby! BUT from age 5-6 he gained nothing. He stayed at 66 pounds and sometimes even went down a pound or two. I never really worried because he was already so big. But the dietician noticed he wasn't gaining anymore.

He just had a PICC line for 3 weeks too and in those weeks he gained 5 pounds! He now weighs 71 pounds and was eating so much better. It makes sense with the bacteria load going down, better things happen...BUt I always get nauseous on antibiotics and thought they would do a number on his stomach. Apparently.. not. I always thought he would lose weight on IVs but the opposite seems to be happening lately. Good luck with your last week, glad she's feeling better!
Megan
 
M

mneville

Guest
Funny you say that...Aidan is big thanks to heavy whipping cream when he was a baby! BUT from age 5-6 he gained nothing. He stayed at 66 pounds and sometimes even went down a pound or two. I never really worried because he was already so big. But the dietician noticed he wasn't gaining anymore.

He just had a PICC line for 3 weeks too and in those weeks he gained 5 pounds! He now weighs 71 pounds and was eating so much better. It makes sense with the bacteria load going down, better things happen...BUt I always get nauseous on antibiotics and thought they would do a number on his stomach. Apparently.. not. I always thought he would lose weight on IVs but the opposite seems to be happening lately. Good luck with your last week, glad she's feeling better!
Megan
 
M

mneville

Guest
Funny you say that...Aidan is big thanks to heavy whipping cream when he was a baby! BUT from age 5-6 he gained nothing. He stayed at 66 pounds and sometimes even went down a pound or two. I never really worried because he was already so big. But the dietician noticed he wasn't gaining anymore.
<br />
<br />He just had a PICC line for 3 weeks too and in those weeks he gained 5 pounds! He now weighs 71 pounds and was eating so much better. It makes sense with the bacteria load going down, better things happen...BUt I always get nauseous on antibiotics and thought they would do a number on his stomach. Apparently.. not. I always thought he would lose weight on IVs but the opposite seems to be happening lately. Good luck with your last week, glad she's feeling better!
<br />Megan
 
M

mag6125

New member
There's definitely a relation, when I'm getting sick or sick my weight drops as much as 10 pounds and when I start ivs my appetite usually gets better and I gain well. There's been times where I've gained 9lbs in three days while on ivs and I don't have a feeding tube so that's just me stuffing my face pretty much 24/7. This past round I think I gained about 3-5lbs and I'm maintaining it so far. Its a constant battle though since I stopped playing hockey. I have 3 bins for my jeans because I go back and forth on size, today I realized my "baggy" jeans are no longer baggy <img src="i/expressions/face-icon-small-smile.gif" border="0"> My weight was at its best (125lbs which was huge for me!) when I was super active and doing softball, marching band, and hockey because most of my weight was muscle so I kept it on better. Get Alyssa some little weights and start building her up! lol
 
M

mag6125

New member
There's definitely a relation, when I'm getting sick or sick my weight drops as much as 10 pounds and when I start ivs my appetite usually gets better and I gain well. There's been times where I've gained 9lbs in three days while on ivs and I don't have a feeding tube so that's just me stuffing my face pretty much 24/7. This past round I think I gained about 3-5lbs and I'm maintaining it so far. Its a constant battle though since I stopped playing hockey. I have 3 bins for my jeans because I go back and forth on size, today I realized my "baggy" jeans are no longer baggy <img src="i/expressions/face-icon-small-smile.gif" border="0"> My weight was at its best (125lbs which was huge for me!) when I was super active and doing softball, marching band, and hockey because most of my weight was muscle so I kept it on better. Get Alyssa some little weights and start building her up! lol
 
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