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Re: [Myotubular_Myopathy] "Magic Powder" ?

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  • kristin cypher
    Hi Darlene! Pediasure is really, really expensive - I can t believe you go through that much a month! We had a nutritionist at our Children s Hospital also
    Message 1 of 9 , Mar 19, 2005
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      Hi Darlene!
       
      Pediasure is really, really expensive - I can't believe you go through that much a month!
       
      We had a nutritionist at our Children's Hospital also reccomend Pediasure, but when she told us how expensive it was, we asked if there were any other options.  She said that we could mix something like Carnation Goodstep 2 (kind of an older kid formula) with whole milk (instead of water).  She also suggested something as simple as Carnation Instant Breakfast, but that was so full of sugar that we didn't think it would be a good idea.  Overall, we use the formula/whole milk mixture for Sebi, but he is only 2 this month, and I can't remember how old Kyle is - he may need more nutrition than Sebi.
       
      I've also been looking into trying to get insurance to pay for Pediasure, and it seems like the issue is that Sebi isn't old enough yet to qualify for it, but if Kyle is....this may be another option to investigate.
       
      Oh!  And be sure to get ALL the free samples from the nutritionist that you can.  The company gives people like this TONS of samples, and our nutritionist said that they often have to throw away unused cans!  So be sure to ask, they could at least give you a case or two!
       
      Good luck - I know it's so expensive!
      Kristin

      ANN MILLER <dm4462@...> wrote:
      Kyle's nutritionist has him on pediasure.  Which is expensive.  What purees are you guys mixing?
      Got to be cheaper.  We go through 4 1/2 cases of pediasure a month. 
       
      Take care,
       
      Darlene 
      ----- Original Message -----
      Sent: Friday, March 18, 2005 9:12 AM
      Subject: Re: [Myotubular_Myopathy] "Magic Powder" ?

      That's funny!  I have tasted Jacob's purees, too!  They aren't bad bad, but I don't want a big glass of it either. 
       
      Amanda 
       
      -------Original Message-------
       
      Date: 03/18/05 01:16:48
      Subject: Re: [Myotubular_Myopathy] "Magic Powder" ?
       
      Tee-hee!!  I had to laugh at the 'masonmeal' description - it really does sound gross, but I can't believe you haven't tried it!!  Some of Sebi's purees don't sound great to me, but I still think I've eaten my weight in them just trying them out.  =)  I've even tried the g-tube formula, which smells rancid (we special mix ours, too, but not to the degree you do), but ended up not being that bad.
       
      Double-dare you to try it!!
       
      Kristin

      Scott Fontana <masonsparents@...> wrote:
      OK kids, what gives. I read all these posts about this "magic powder", could ya let me in on what it is? Or do I need to know the "secret handshake", "the password" or the "the knock". I hate to sound sarcastic...but I've got to know.
       
      Mason was having all kinds of allergies to commericial formulas, so we invested in a Vita~Mix blender. This is the same blender used at Jamba Juice. It has been great, we put in fruits, veggies, meat, peanut butter, soy milk, sounds and smells gross, no we've never tried it, but Mason has done great on it. I would recommend the Vita-Mix for anyone who has a g-tube fed kid. Our nutrionist told us about it. It is a bit pricey $500 (yes for a blender). I much rather would have bought another $19.95 Hamilton Beach Model from my neigborhood K-Mart, but after going through 3 of those making Mason's food, or as we call it MasonMeal, my wife talked me into it. The blender has a ten year warranty, so that made it worth it. Hope you all are doing well.


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    • ANN MILLER
      Hi Kristin, Our insurance pays for part of the pediasure. They just started paying for his diapers after he turned 3 years old in December, which was a big
      Message 2 of 9 , Mar 19, 2005
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        Hi Kristin,
         
        Our insurance pays for part of the pediasure.   They just started paying for his diapers after he turned 3 years old in December, which was a big help.   I don't think the pediasure is satisfing him.  He is always asking for more to eat.  I'm not sure if he is hungry or just sees us eating and wanting it.  We don't want to increase his intake of pediasure because we don't want him getting to big (fat). Especially since summer is coming.  He already weighs 45 lbs  and is 41.5 inches tall.  He goes back to his nutritionist in April.  I will have to talk to her about alternative feedings.  She does give us a couple of cases each time we see her, that helps too.
         
        Take care,
         
        Darlene
        ----- Original Message -----
        Sent: Saturday, March 19, 2005 5:52 AM
        Subject: Re: [Myotubular_Myopathy] "Magic Powder" ?

        Hi Darlene!
         
        Pediasure is really, really expensive - I can't believe you go through that much a month!
         
        We had a nutritionist at our Children's Hospital also reccomend Pediasure, but when she told us how expensive it was, we asked if there were any other options.  She said that we could mix something like Carnation Goodstep 2 (kind of an older kid formula) with whole milk (instead of water).  She also suggested something as simple as Carnation Instant Breakfast, but that was so full of sugar that we didn't think it would be a good idea.  Overall, we use the formula/whole milk mixture for Sebi, but he is only 2 this month, and I can't remember how old Kyle is - he may need more nutrition than Sebi.
         
        I've also been looking into trying to get insurance to pay for Pediasure, and it seems like the issue is that Sebi isn't old enough yet to qualify for it, but if Kyle is....this may be another option to investigate.
         
        Oh!  And be sure to get ALL the free samples from the nutritionist that you can.  The company gives people like this TONS of samples, and our nutritionist said that they often have to throw away unused cans!  So be sure to ask, they could at least give you a case or two!
         
        Good luck - I know it's so expensive!
        Kristin

        ANN MILLER <dm4462@...> wrote:
        Kyle's nutritionist has him on pediasure.  Which is expensive.  What purees are you guys mixing?
        Got to be cheaper.  We go through 4 1/2 cases of pediasure a month. 
         
        Take care,
         
        Darlene 
        ----- Original Message -----
        Sent: Friday, March 18, 2005 9:12 AM
        Subject: Re: [Myotubular_Myopathy] "Magic Powder" ?

        That's funny!  I have tasted Jacob's purees, too!  They aren't bad bad, but I don't want a big glass of it either. 
         
        Amanda 
         
        -------Original Message-------
         
        Date: 03/18/05 01:16:48
        Subject: Re: [Myotubular_Myopathy] "Magic Powder" ?
         
        Tee-hee!!  I had to laugh at the 'masonmeal' description - it really does sound gross, but I can't believe you haven't tried it!!  Some of Sebi's purees don't sound great to me, but I still think I've eaten my weight in them just trying them out.  =)  I've even tried the g-tube formula, which smells rancid (we special mix ours, too, but not to the degree you do), but ended up not being that bad.
         
        Double-dare you to try it!!
         
        Kristin

        Scott Fontana <masonsparents@...> wrote:
        OK kids, what gives. I read all these posts about this "magic powder", could ya let me in on what it is? Or do I need to know the "secret handshake", "the password" or the "the knock". I hate to sound sarcastic...but I've got to know.
         
        Mason was having all kinds of allergies to commericial formulas, so we invested in a Vita~Mix blender. This is the same blender used at Jamba Juice. It has been great, we put in fruits, veggies, meat, peanut butter, soy milk, sounds and smells gross, no we've never tried it, but Mason has done great on it. I would recommend the Vita-Mix for anyone who has a g-tube fed kid. Our nutrionist told us about it. It is a bit pricey $500 (yes for a blender). I much rather would have bought another $19.95 Hamilton Beach Model from my neigborhood K-Mart, but after going through 3 of those making Mason's food, or as we call it MasonMeal, my wife talked me into it. The blender has a ten year warranty, so that made it worth it. Hope you all are doing well.


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      • redscootee@webtv.net
        Can t help you with the magic powder. I guess I don t know the password or secret handshake either. lol Sounds like the Masonmeal does the trick. Even though
        Message 3 of 9 , Mar 20, 2005
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          Can't help you with the magic powder. I guess I don't know the password
          or secret handshake either. lol
          Sounds like the Masonmeal does the trick. Even though it is pricey
          initially it sounds like it is well worth it.
          take care pat
        • Jessica Juckers
          Hi All, Does anybody have any medical journals regarding myostatin and these supplements? Shannon, I think you may of sent me some in the past. I would very
          Message 4 of 9 , Mar 20, 2005
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            Hi All,
            Does anybody have any medical journals regarding myostatin and these supplements?
            Shannon, I think you may of sent me some in the past. I would very much like to read them before I give this to Jack.
            Jess

            ANN MILLER wrot
            Kyle's nutritionist has him on pediasure.  Which is expensive.  What purees are you guys mixing?
            Got to be cheaper.  We go through 4 1/2 cases of pediasure a month. 
             
            Take care,
             
            Darlene 
            ----- Original Message -----
            Sent: Friday, March 18, 2005 9:12 AM
            Subject: Re: [Myotubular_Myopathy] "Magic Powder" ?

            That's funny!  I have tasted Jacob's purees, too!  They aren't bad bad, but I don't want a big glass of it either. 
             
            Amanda 
             
            -------Original Message-------
             
            Date: 03/18/05 01:16:48
            Subject: Re: [Myotubular_Myopathy] "Magic Powder" ?
             
            Tee-hee!!  I had to laugh at the 'masonmeal' description - it really does sound gross, but I can't believe you haven't tried it!!  Some of Sebi's purees don't sound great to me, but I still think I've eaten my weight in them just trying them out.  =)  I've even tried the g-tube formula, which smells rancid (we special mix ours, too, but not to the degree you do), but ended up not being that bad.
             
            Double-dare you to try it!!
             
            Kristin

            Scott Fontana <masonsparents@...> wrote:
            OK kids, what gives. I read all these posts about this "magic powder", could ya let me in on what it is? Or do I need to know the "secret handshake", "the password" or the "the knock". I hate to sound sarcastic...but I've got to know.
             
            Mason was having all kinds of allergies to commericial formulas, so we invested in a Vita~Mix blender. This is the same blender used at Jamba Juice. It has been great, we put in fruits, veggies, meat, peanut butter, soy milk, sounds and smells gross, no we've never tried it, but Mason has done great on it. I would recommend the Vita-Mix for anyone who has a g-tube fed kid. Our nutrionist told us about it. It is a bit pricey $500 (yes for a blender). I much rather would have bought another $19.95 Hamilton Beach Model from my neigborhood K-Mart, but after going through 3 of those making Mason's food, or as we call it MasonMeal, my wife talked me into it. The blender has a ten year warranty, so that made it worth it. Hope you all are doing well.


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          • connie guinn
            Scott, To learn about the magic powder , email Shannon or Darlene provately. This message board bans using it to promote a product. I only have a limited
            Message 5 of 9 , Mar 21, 2005
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              Scott,
              To learn about the 'magic powder', email Shannon or Darlene provately.  This message board bans using it to promote a product.  I only have a limited amount of time at the library today.
                                               -Connie

              Scott Fontana <masonsparents@...> wrote:
              OK kids, what gives. I read all these posts about this "magic powder", could ya let me in on what it is? Or do I need to know the "secret handshake", "the password" or the "the knock". I hate to sound sarcastic...but I've got to know.
               
              Mason was having all kinds of allergies to commericial formulas, so we invested in a Vita~Mix blender. This is the same blender used at Jamba Juice. It has been great, we put in fruits, veggies, meat, peanut butter, soy milk, sounds and smells gross, no we've never tried it, but Mason has done great on it. I would recommend the Vita-Mix for anyone who has a g-tube fed kid. Our nutrionist told us about it. It is a bit pricey $500 (yes for a blender). I much rather would have bought another $19.95 Hamilton Beach Model from my neigborhood K-Mart, but after going through 3 of those making Mason's food, or as we call it MasonMeal, my wife talked me into it. The blender has a ten year warranty, so that made it worth it. Hope you all are doing well.


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