INFINITY PUMP PRODUCT ALERT

[mom2owen]

I know Moog knows about some of the problems but I am still bitter that they have't fixed them! As my DME said, you know if the people at Moog had kiddos with tubes, this would have been fixed long ago!
<br />I liked the old bag tops but I like the new bag tubing since it know longer gets clogged in a backpack. But the whole hook at the top DOES NOT work well for a pole or the backpack! Ridiculous.
<br />Well, now that there is actually a problem with the safety of the bags as well, I sure hope they speed up the remedy process! I have also heard that the Kangaroo Joey people are working on yet another new model, I personally cannot wait to see it <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Good luck everyone, I hope we can catch that problem before it happens.

 

[hmw]

At risk of sounding incredibly stupid, who is Moog?

 

[hmw]

At risk of sounding incredibly stupid, who is Moog?

 

[hmw]

At risk of sounding incredibly stupid, who is Moog?

 

[mom2owen]

Moog is the company that makes the Infinity pump and supplies. You are not sounding dumb <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think I was reassured of that somewhere too <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[mom2owen]

Moog is the company that makes the Infinity pump and supplies. You are not sounding dumb <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think I was reassured of that somewhere too <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[mom2owen]

Moog is the company that makes the Infinity pump and supplies. You are not sounding dumb <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think I was reassured of that somewhere too <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[just1more]

Just thinking of this makes me want to puke and I don't get sick easy.

We just got an Infinity pump about a month ago and I agree that I don't like the bags. Now I'm excited they might change to something better than these!

 

[just1more]

Just thinking of this makes me want to puke and I don't get sick easy.

We just got an Infinity pump about a month ago and I agree that I don't like the bags. Now I'm excited they might change to something better than these!

 

[just1more]

Just thinking of this makes me want to puke and I don't get sick easy.
<br />
<br />We just got an Infinity pump about a month ago and I agree that I don't like the bags. Now I'm excited they might change to something better than these!

 

[mom2owen]

I hear you Tom, nasty image for sure.
Hey Heather, if you don't mind me asking, how did you know when you could wean? Owen has gained weight nicely since going on Creon, I am scared to take away the added calories though...
And, while I am asking, what kind of formula do most of you use? Owen is on Neocate Jr. elemental. He has a long history of vomiting and now we think it is the fat from dairy, not the casein or lactose. Are the rest of you using Neocate?
Thanks every one. Here's to hoping for all good luck with the bags, or better yet, something new!

 

[mom2owen]

I hear you Tom, nasty image for sure.
Hey Heather, if you don't mind me asking, how did you know when you could wean? Owen has gained weight nicely since going on Creon, I am scared to take away the added calories though...
And, while I am asking, what kind of formula do most of you use? Owen is on Neocate Jr. elemental. He has a long history of vomiting and now we think it is the fat from dairy, not the casein or lactose. Are the rest of you using Neocate?
Thanks every one. Here's to hoping for all good luck with the bags, or better yet, something new!

 

[mom2owen]

I hear you Tom, nasty image for sure.
<br />Hey Heather, if you don't mind me asking, how did you know when you could wean? Owen has gained weight nicely since going on Creon, I am scared to take away the added calories though...
<br />And, while I am asking, what kind of formula do most of you use? Owen is on Neocate Jr. elemental. He has a long history of vomiting and now we think it is the fat from dairy, not the casein or lactose. Are the rest of you using Neocate?
<br />Thanks every one. Here's to hoping for all good luck with the bags, or better yet, something new!

 

[hmw]

Emily uses Peptamen Jr. 1.5. She is doing great with it and since getting the tube 7mo ago has gained 7-8lbs!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We decided to go with that one because of the broken down protein and high proportion of MCT fat.

I hear you in not wanting to take away a good source of calories! Weaning is a viable option for some kids but in our case I have no interest in weaning her from the tube/removing it no matter how much weight she gains. Emily, at almost 10, is approaching the age of the puberty growth spurt, where girls in the 50th% gain on average about 40 pounds between the age of 10-13 and continue to grow and gain for several years after. She loses weight when sick due to the tremendous strain exacerbations put on their systems and adequate hydration is a concern as well when ill. I don't wait to take this extra source of support away from her.

 

[hmw]

Emily uses Peptamen Jr. 1.5. She is doing great with it and since getting the tube 7mo ago has gained 7-8lbs!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We decided to go with that one because of the broken down protein and high proportion of MCT fat.

I hear you in not wanting to take away a good source of calories! Weaning is a viable option for some kids but in our case I have no interest in weaning her from the tube/removing it no matter how much weight she gains. Emily, at almost 10, is approaching the age of the puberty growth spurt, where girls in the 50th% gain on average about 40 pounds between the age of 10-13 and continue to grow and gain for several years after. She loses weight when sick due to the tremendous strain exacerbations put on their systems and adequate hydration is a concern as well when ill. I don't wait to take this extra source of support away from her.

 

[hmw]

Emily uses Peptamen Jr. 1.5. She is doing great with it and since getting the tube 7mo ago has gained 7-8lbs!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We decided to go with that one because of the broken down protein and high proportion of MCT fat.
<br />
<br />I hear you in not wanting to take away a good source of calories! Weaning is a viable option for some kids but in our case I have no interest in weaning her from the tube/removing it no matter how much weight she gains. Emily, at almost 10, is approaching the age of the puberty growth spurt, where girls in the 50th% gain on average about 40 pounds between the age of 10-13 and continue to grow and gain for several years after. She loses weight when sick due to the tremendous strain exacerbations put on their systems and adequate hydration is a concern as well when ill. I don't wait to take this extra source of support away from her.

 

[Mommafirst]

Regarding the weaning: About a year ago, when Alyssa hit 60% for BMI, we were told we could try and wean. We went down to 5 nights a week for feeds from 7, then down to 4 and then 3. As we reduced nights, we continued to go in every two months for weight checks. Since she maintained her growth they gave us the OK to wean, but we continued in at 3 nights a week. When Alyssa went inpatient in December, it was too much to do the feeding tube with the IVs (not that we havent done it before, we were just overwhelmed) and we decided it would be a good test on her weight. She stayed stable and we haven't gone back to using the tube, so its been over 2 months. But I'm noticing her weight getting sluggish again, so who knows if the wean will stick. Her appetite is good, and that was my big concern, so we are on a wait and see.

 

[Mommafirst]

Regarding the weaning: About a year ago, when Alyssa hit 60% for BMI, we were told we could try and wean. We went down to 5 nights a week for feeds from 7, then down to 4 and then 3. As we reduced nights, we continued to go in every two months for weight checks. Since she maintained her growth they gave us the OK to wean, but we continued in at 3 nights a week. When Alyssa went inpatient in December, it was too much to do the feeding tube with the IVs (not that we havent done it before, we were just overwhelmed) and we decided it would be a good test on her weight. She stayed stable and we haven't gone back to using the tube, so its been over 2 months. But I'm noticing her weight getting sluggish again, so who knows if the wean will stick. Her appetite is good, and that was my big concern, so we are on a wait and see.

 

[Mommafirst]

Regarding the weaning: About a year ago, when Alyssa hit 60% for BMI, we were told we could try and wean. We went down to 5 nights a week for feeds from 7, then down to 4 and then 3. As we reduced nights, we continued to go in every two months for weight checks. Since she maintained her growth they gave us the OK to wean, but we continued in at 3 nights a week. When Alyssa went inpatient in December, it was too much to do the feeding tube with the IVs (not that we havent done it before, we were just overwhelmed) and we decided it would be a good test on her weight. She stayed stable and we haven't gone back to using the tube, so its been over 2 months. But I'm noticing her weight getting sluggish again, so who knows if the wean will stick. Her appetite is good, and that was my big concern, so we are on a wait and see.

 

[hmw]

I am no professional but I think early childhood is at a better age to try it... you have quite a few years before her system will be challenged by the enormous changes of puberty to see if she can maintain her growth curve on her own. Babyhood/toddlerhood kids grow SO much proportionately speaking and then do so AGAIN during adolescence. Kids consistently grow and gain during middle childhood but not at the tremendous rate seen earlier and later.

eta> I hope Alyssa's gain picks up!! Every kid goes through ups and downs there so hopefully she is just in a 'natural' downturn and will pick up again on her own. Emily's height has been creeping up very consistently, but the weight jumps, levels, jumps, levels- ever increasing but not in precise intervals.