Tobi, feeding tube, at a loss

PlumPerfect · Sep 16, 2009

Ok went to Brandon's appointment today.. last appointment his weight had plato-ed. This visit he lost a few oz... He is 15 months and 21 pounds. He has been a walking active boy the past two months. My non-cf daughter at alomst 3 weighs 25 pounds.. My husband and I were tinmy kids... But non of this matters to them.. I told them that the TOBI supresses his appitite and they reponded dumbfounded. She told me if he didn't gain weight by his next appointment she will most likely want to do a feeding tube.. This just doesn't sit well.. He loves to eat just doesn't seem to love meat and is allergic to milk.. They switched his milk to something he won't drink at all really.. and yelled at me for using Soy and said it was bad for cf'ers.. yet he was gaining when he was on it. I really am not sure of their nutrition advise and now they asked me to try lactaid.. but he is allergic to whey which is in lactaid. I just don't understand what they are thinking and why they are messing with something that was working and now wants to possibly put a tube in...

I am so sorry this is quite a vent just didn't know where else to vent to.. any suggestions on this matter would be nice..

PlumPerfect · Sep 16, 2009

Ok went to Brandon's appointment today.. last appointment his weight had plato-ed. This visit he lost a few oz... He is 15 months and 21 pounds. He has been a walking active boy the past two months. My non-cf daughter at alomst 3 weighs 25 pounds.. My husband and I were tinmy kids... But non of this matters to them.. I told them that the TOBI supresses his appitite and they reponded dumbfounded. She told me if he didn't gain weight by his next appointment she will most likely want to do a feeding tube.. This just doesn't sit well.. He loves to eat just doesn't seem to love meat and is allergic to milk.. They switched his milk to something he won't drink at all really.. and yelled at me for using Soy and said it was bad for cf'ers.. yet he was gaining when he was on it. I really am not sure of their nutrition advise and now they asked me to try lactaid.. but he is allergic to whey which is in lactaid. I just don't understand what they are thinking and why they are messing with something that was working and now wants to possibly put a tube in...

I am so sorry this is quite a vent just didn't know where else to vent to.. any suggestions on this matter would be nice..

PlumPerfect · Sep 16, 2009

Ok went to Brandon's appointment today.. last appointment his weight had plato-ed. This visit he lost a few oz... He is 15 months and 21 pounds. He has been a walking active boy the past two months. My non-cf daughter at alomst 3 weighs 25 pounds.. My husband and I were tinmy kids... But non of this matters to them.. I told them that the TOBI supresses his appitite and they reponded dumbfounded. She told me if he didn't gain weight by his next appointment she will most likely want to do a feeding tube.. This just doesn't sit well.. He loves to eat just doesn't seem to love meat and is allergic to milk.. They switched his milk to something he won't drink at all really.. and yelled at me for using Soy and said it was bad for cf'ers.. yet he was gaining when he was on it. I really am not sure of their nutrition advise and now they asked me to try lactaid.. but he is allergic to whey which is in lactaid. I just don't understand what they are thinking and why they are messing with something that was working and now wants to possibly put a tube in...

I am so sorry this is quite a vent just didn't know where else to vent to.. any suggestions on this matter would be nice..

PlumPerfect · Sep 16, 2009

Ok went to Brandon's appointment today.. last appointment his weight had plato-ed. This visit he lost a few oz... He is 15 months and 21 pounds. He has been a walking active boy the past two months. My non-cf daughter at alomst 3 weighs 25 pounds.. My husband and I were tinmy kids... But non of this matters to them.. I told them that the TOBI supresses his appitite and they reponded dumbfounded. She told me if he didn't gain weight by his next appointment she will most likely want to do a feeding tube.. This just doesn't sit well.. He loves to eat just doesn't seem to love meat and is allergic to milk.. They switched his milk to something he won't drink at all really.. and yelled at me for using Soy and said it was bad for cf'ers.. yet he was gaining when he was on it. I really am not sure of their nutrition advise and now they asked me to try lactaid.. but he is allergic to whey which is in lactaid. I just don't understand what they are thinking and why they are messing with something that was working and now wants to possibly put a tube in...

I am so sorry this is quite a vent just didn't know where else to vent to.. any suggestions on this matter would be nice..

PlumPerfect · Sep 16, 2009

Ok went to Brandon's appointment today.. last appointment his weight had plato-ed. This visit he lost a few oz... He is 15 months and 21 pounds. He has been a walking active boy the past two months. My non-cf daughter at alomst 3 weighs 25 pounds.. My husband and I were tinmy kids... But non of this matters to them.. I told them that the TOBI supresses his appitite and they reponded dumbfounded. She told me if he didn't gain weight by his next appointment she will most likely want to do a feeding tube.. This just doesn't sit well.. He loves to eat just doesn't seem to love meat and is allergic to milk.. They switched his milk to something he won't drink at all really.. and yelled at me for using Soy and said it was bad for cf'ers.. yet he was gaining when he was on it. I really am not sure of their nutrition advise and now they asked me to try lactaid.. but he is allergic to whey which is in lactaid. I just don't understand what they are thinking and why they are messing with something that was working and now wants to possibly put a tube in...
 
 I am so sorry this is quite a vent just didn't know where else to vent to.. any suggestions on this matter would be nice..

Mommafirst · Sep 16, 2009

I've been where you are. Alyssa doesn't have allergies, but we fought the tube for over a year. She had it placed at almost 3 years old, she weighed 23 pounds.

Look, you are his mom and you have to make a lot of really difficult decisions for him. We fought the tube because we really believed we could get the weight on without it. We tried everything, and I think you should too. If you think there are things you could do to avoid the tube, do it -- you make the final decisions. But keep somewhat open to the possibility of the tube if all else fails. Hopefully you'll be able to show that you can get the weight on naturally.

For what its worth, it wasn't until we put the tube in that I realized how bad her growth had been. I also have a very small non-cf sibling that made me feel it was just genetics. He's almost 6 and he's only 36 pounds. But bottom line is that it doesn't matter. There is a direct relationship between BMI and lung functioning over time. Those with better BMI do better with their lungs -- and my husband and I finally came to a place where we didn't want to ever be at some moment in the future where we felt we hadn't done everything we could to fight this disease and equip her with her best shot. ((((HUGS)))))) I know its a really tough decision.

Mommafirst · Sep 16, 2009

I've been where you are. Alyssa doesn't have allergies, but we fought the tube for over a year. She had it placed at almost 3 years old, she weighed 23 pounds.

Look, you are his mom and you have to make a lot of really difficult decisions for him. We fought the tube because we really believed we could get the weight on without it. We tried everything, and I think you should too. If you think there are things you could do to avoid the tube, do it -- you make the final decisions. But keep somewhat open to the possibility of the tube if all else fails. Hopefully you'll be able to show that you can get the weight on naturally.

For what its worth, it wasn't until we put the tube in that I realized how bad her growth had been. I also have a very small non-cf sibling that made me feel it was just genetics. He's almost 6 and he's only 36 pounds. But bottom line is that it doesn't matter. There is a direct relationship between BMI and lung functioning over time. Those with better BMI do better with their lungs -- and my husband and I finally came to a place where we didn't want to ever be at some moment in the future where we felt we hadn't done everything we could to fight this disease and equip her with her best shot. ((((HUGS)))))) I know its a really tough decision.

Mommafirst · Sep 16, 2009

I've been where you are. Alyssa doesn't have allergies, but we fought the tube for over a year. She had it placed at almost 3 years old, she weighed 23 pounds.

Look, you are his mom and you have to make a lot of really difficult decisions for him. We fought the tube because we really believed we could get the weight on without it. We tried everything, and I think you should too. If you think there are things you could do to avoid the tube, do it -- you make the final decisions. But keep somewhat open to the possibility of the tube if all else fails. Hopefully you'll be able to show that you can get the weight on naturally.

For what its worth, it wasn't until we put the tube in that I realized how bad her growth had been. I also have a very small non-cf sibling that made me feel it was just genetics. He's almost 6 and he's only 36 pounds. But bottom line is that it doesn't matter. There is a direct relationship between BMI and lung functioning over time. Those with better BMI do better with their lungs -- and my husband and I finally came to a place where we didn't want to ever be at some moment in the future where we felt we hadn't done everything we could to fight this disease and equip her with her best shot. ((((HUGS)))))) I know its a really tough decision.

Mommafirst · Sep 16, 2009

I've been where you are. Alyssa doesn't have allergies, but we fought the tube for over a year. She had it placed at almost 3 years old, she weighed 23 pounds.

Look, you are his mom and you have to make a lot of really difficult decisions for him. We fought the tube because we really believed we could get the weight on without it. We tried everything, and I think you should too. If you think there are things you could do to avoid the tube, do it -- you make the final decisions. But keep somewhat open to the possibility of the tube if all else fails. Hopefully you'll be able to show that you can get the weight on naturally.

For what its worth, it wasn't until we put the tube in that I realized how bad her growth had been. I also have a very small non-cf sibling that made me feel it was just genetics. He's almost 6 and he's only 36 pounds. But bottom line is that it doesn't matter. There is a direct relationship between BMI and lung functioning over time. Those with better BMI do better with their lungs -- and my husband and I finally came to a place where we didn't want to ever be at some moment in the future where we felt we hadn't done everything we could to fight this disease and equip her with her best shot. ((((HUGS)))))) I know its a really tough decision.

Mommafirst · Sep 16, 2009

I've been where you are. Alyssa doesn't have allergies, but we fought the tube for over a year. She had it placed at almost 3 years old, she weighed 23 pounds.
 
 Look, you are his mom and you have to make a lot of really difficult decisions for him. We fought the tube because we really believed we could get the weight on without it. We tried everything, and I think you should too. If you think there are things you could do to avoid the tube, do it -- you make the final decisions. But keep somewhat open to the possibility of the tube if all else fails. Hopefully you'll be able to show that you can get the weight on naturally.
 
 For what its worth, it wasn't until we put the tube in that I realized how bad her growth had been. I also have a very small non-cf sibling that made me feel it was just genetics. He's almost 6 and he's only 36 pounds. But bottom line is that it doesn't matter. There is a direct relationship between BMI and lung functioning over time. Those with better BMI do better with their lungs -- and my husband and I finally came to a place where we didn't want to ever be at some moment in the future where we felt we hadn't done everything we could to fight this disease and equip her with her best shot. ((((HUGS)))))) I know its a really tough decision.

izemmom · Sep 17, 2009

Just wanted to say I've been where you are, too, and I agree with everything that Heather said. It took me several months to get to the point of being able to accept the tube. We "tried everything" first, too. You HAVE to, I think, in order to be at peace with any decision.

As you can read on a couple of different threads out there right now, I am vey glad that we got the tube for Emily. It has made a huge difference for her. But it wasn't easy.

Good luck!

izemmom · Sep 17, 2009

Just wanted to say I've been where you are, too, and I agree with everything that Heather said. It took me several months to get to the point of being able to accept the tube. We "tried everything" first, too. You HAVE to, I think, in order to be at peace with any decision.

As you can read on a couple of different threads out there right now, I am vey glad that we got the tube for Emily. It has made a huge difference for her. But it wasn't easy.

Good luck!

izemmom · Sep 17, 2009

Just wanted to say I've been where you are, too, and I agree with everything that Heather said. It took me several months to get to the point of being able to accept the tube. We "tried everything" first, too. You HAVE to, I think, in order to be at peace with any decision.

As you can read on a couple of different threads out there right now, I am vey glad that we got the tube for Emily. It has made a huge difference for her. But it wasn't easy.

Good luck!

izemmom · Sep 17, 2009

Just wanted to say I've been where you are, too, and I agree with everything that Heather said. It took me several months to get to the point of being able to accept the tube. We "tried everything" first, too. You HAVE to, I think, in order to be at peace with any decision.

As you can read on a couple of different threads out there right now, I am vey glad that we got the tube for Emily. It has made a huge difference for her. But it wasn't easy.

Good luck!

izemmom · Sep 17, 2009

Just wanted to say I've been where you are, too, and I agree with everything that Heather said. It took me several months to get to the point of being able to accept the tube. We "tried everything" first, too. You HAVE to, I think, in order to be at peace with any decision.
 
 As you can read on a couple of different threads out there right now, I am vey glad that we got the tube for Emily. It has made a huge difference for her. But it wasn't easy.
 
 Good luck!

PlumPerfect · Sep 19, 2009

Thank you for your response.. Its just so hard especially since he eats me out of house and home just doesn't seem to like the things he needs to like. Any other child with out CF I would be jumping up and down about a healthy eater, but now I want an unhealthy eater. I found a protein shake to try him on and we will see plus I am trying to sneak in to his normal food more fat protein and or calories. I just don't think he is really small. People who don't know him and about his CF say look at that big boy, plus he is super strong.

I sometimes really think the TOBI interferes with his appetite when we are on our on month he doesn't eat as good

PlumPerfect · Sep 19, 2009

Thank you for your response.. Its just so hard especially since he eats me out of house and home just doesn't seem to like the things he needs to like. Any other child with out CF I would be jumping up and down about a healthy eater, but now I want an unhealthy eater. I found a protein shake to try him on and we will see plus I am trying to sneak in to his normal food more fat protein and or calories. I just don't think he is really small. People who don't know him and about his CF say look at that big boy, plus he is super strong.

I sometimes really think the TOBI interferes with his appetite when we are on our on month he doesn't eat as good

PlumPerfect · Sep 19, 2009

Thank you for your response.. Its just so hard especially since he eats me out of house and home just doesn't seem to like the things he needs to like. Any other child with out CF I would be jumping up and down about a healthy eater, but now I want an unhealthy eater. I found a protein shake to try him on and we will see plus I am trying to sneak in to his normal food more fat protein and or calories. I just don't think he is really small. People who don't know him and about his CF say look at that big boy, plus he is super strong.

I sometimes really think the TOBI interferes with his appetite when we are on our on month he doesn't eat as good

PlumPerfect · Sep 19, 2009

Thank you for your response.. Its just so hard especially since he eats me out of house and home just doesn't seem to like the things he needs to like. Any other child with out CF I would be jumping up and down about a healthy eater, but now I want an unhealthy eater. I found a protein shake to try him on and we will see plus I am trying to sneak in to his normal food more fat protein and or calories. I just don't think he is really small. People who don't know him and about his CF say look at that big boy, plus he is super strong.

I sometimes really think the TOBI interferes with his appetite when we are on our on month he doesn't eat as good

PlumPerfect · Sep 19, 2009

Thank you for your response.. Its just so hard especially since he eats me out of house and home just doesn't seem to like the things he needs to like. Any other child with out CF I would be jumping up and down about a healthy eater, but now I want an unhealthy eater. I found a protein shake to try him on and we will see plus I am trying to sneak in to his normal food more fat protein and or calories. I just don't think he is really small. People who don't know him and about his CF say look at that big boy, plus he is super strong.
 
 I sometimes really think the TOBI interferes with his appetite when we are on our on month he doesn't eat as good

Tobi, feeding tube, at a loss

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