Loading ...
Sorry, an error occurred while loading the content.

g tube feedings

Expand Messages
  • kim
    sam is almost 6 months now and i am starting to wonder what happens once we stop giving him breastmilk thru the gtube? hopefully i can continue with the breast
    Message 1 of 8 , Feb 19, 2006
    • 0 Attachment
      sam is almost 6 months now and i am starting to wonder what happens
      once we stop giving him breastmilk thru the gtube? hopefully i can
      continue with the breast milk thru early summer but it's getting
      tiring at this point and is starting to feel like 'just one more thing
      to do'. what do you give your boys for nourishment? we are starting to
      work with the nutritionist at the hospital but we havent had this
      conversation yet..she did mention formulas or pediasure...? do you
      make your own? or add anything to these formulas? he is doing okay
      weight wise, gaining, but below 5% on the height to weight chart; he
      is 15 lbs and 28 inches. i know they want to monitor his weight gain
      closely to make sure he gets up higher inbetween the 10-15% bracket.

      sam also has these things on his gums. they are like small white cyst
      like pockets. the drs call them pearls but no one can recall what the
      actual name of them is. he has them throughout his mouth. they said
      its nothing to be alarmed about, babies get them but when you arent
      taking anything by mouth they arent broken down. has anyone else had
      these? they told me to clean his gums a few times a day with a warm
      wash cloth or a bit of saline and they will eventually break down?

      thank you and hope all is well,
      kim

      a
    • DARLENE MILLER
      Hi Kim, Great to hear Sam is doing good. Kyle was on Enfamil with iron 24 calorie (our nutritionist showed us how to mix it ) until he was about 15 months
      Message 2 of 8 , Feb 20, 2006
      • 0 Attachment
        Hi Kim,
         
        Great to hear Sam is doing good.  Kyle was on Enfamil with iron 24 calorie (our nutritionist showed us how to mix it ) until he was about 15 months old, then we switched to pediasure.  Which he still takes along with 1 vitamin a day.  He also gets water, 600 cc or more depending on the weather.  I usually give him some with each feeding and when I give him his meds.  
         
        Kyle also had the white spots on his gums.  We were told it was calcium buildup and not to worry also.  I started brushing his gums with a baby brush set ( contains 4 different type brushes to be used as they grow) when he came home from the hospital.  Now he only gets them when he has a tooth coming in.  I think this also helped him cut his teeth.
         
        Hope this helps.
         
        Take care,
        Darlene
        ----- Original Message -----
        From: kim
        Sent: Monday, February 20, 2006 12:13 AM
        Subject: [Myotubular_Myopathy] g tube feedings


        sam is almost 6 months now and i am starting to wonder what happens
        once we stop giving him breastmilk thru the gtube? hopefully i can
        continue with the breast milk thru early summer but it's getting
        tiring at this point and is starting to feel like 'just one more thing
        to do'. what do you give your boys for nourishment? we are starting to
        work with the nutritionist at the hospital but we havent had this
        conversation yet..she did mention formulas or pediasure...? do you
        make your own? or add anything to these formulas? he is doing okay
        weight wise, gaining, but below 5% on the height to weight chart; he
        is 15 lbs and 28 inches. i know they want to monitor his weight gain
        closely to make sure he gets up higher inbetween the 10-15% bracket.

        sam also has these things on his gums. they are like small white cyst
        like pockets. the drs call them pearls but no one can recall what the
        actual name of them is. he has them throughout his mouth. they said
        its nothing to be alarmed about, babies get them but when you arent
        taking anything by mouth they arent broken down. has anyone else had
        these? they told me to clean his gums a few times a day with a warm
        wash cloth or a bit of saline and they will eventually break down?

        thank you and hope all is well,
        kim

        a





         
        Yahoo! Groups Links

        <*> To visit your group on the web, go to:
            http://groupsyahoo.com/group/Myotubular_Myopathy/

        <*> To unsubscribe from this group, send an email to:
            Myotubular_Myopathy-unsubscribe@yahoogroups.com

        <*> Your use of Yahoo! Groups is subject to:
            http://docs.yahoo.com/info/terms/
         


      • Amanda Hollingsworth
        Hi Kim, I know what you mean about tiring...I gave Jacob breastmilk for 6 months, but had hoped to do it for a year. I just couldn t do it any more.
        Message 3 of 8 , Feb 20, 2006
        • 0 Attachment
          Hi Kim,  I know what you mean about tiring...I gave Jacob breastmilk for 6 months, but had hoped to do it for a year.  I just couldn't do it any more.  Anyways, he was then on regular Enfamil for 6-8 months, then switched to Pediasure.  We've never worked closely with a nutritionist because Jacob has never had problems gaining weight or tolerating his feeds.  Actually, we hardly ever see the gastroenterologist - just one less dr to see if we don't have to.  We did a blended, milk-based formula (lean meats, veggies, fruits - very well-balanced) for a while, but now that he is in school it is a little more difficult.
           
          HTH,
          Amanda

          kim <kimmyk47@...> wrote:

          sam is almost 6 months now and i am starting to wonder what happens
          once we stop giving him breastmilk thru the gtube? hopefully i can
          continue with the breast milk thru early summer but it's getting
          tiring at this point and is starting to feel like 'just one more thing
          to do'. what do you give your boys for nourishment? we are starting to
          work with the nutritionist at the hospital but we havent had this
          conversation yet..she did mention formulas or pediasure...? do you
          make your own? or add anything to these formulas? he is doing okay
          weight wise, gaining, but below 5% on the height to weight chart; he
          is 15 lbs and 28 inches. i know they want to monitor his weight gain
          closely to make sure he gets up higher inbetween the 10-15% bracket.

          sam also has these things on his gums. they are like small white cyst
          like pockets. the drs call them pearls but no one can recall what the
          actual name of them is. he has them throughout his mouth. they said
          its nothing to be alarmed about, babies get them but when you arent
          taking anything by mouth they arent broken down. has anyone else had
          these? they told me to clean his gums a few times a day with a warm
          wash cloth or a bit of saline and they will eventually break down?

          thank you and hope all is well,
          kim

          a






          Yahoo! Groups Links

          <*> To visit your group on the web, go to:
          http://groups.yahoo.com/group/Myotubular_Myopathy/

          <*> To unsubscribe from this group, send an email to:
          Myotubular_Myopathy-unsubscribe@yahoogroups.com

          <*> Your use of Yahoo! Groups is subject to:
          http://docs.yahoo.com/info/terms/






          What are the most popular cars? Find out at Yahoo! Autos

        • Shannon
          HI Kim, I too gave Javad breast milk, for about 13 months and then decided this bessie needed to move on! :) We have had some difficulty getting the right
          Message 4 of 8 , Feb 20, 2006
          • 0 Attachment
            HI Kim,

            I too gave Javad breast milk, for about 13 months and then decided
            this bessie needed to move on! :) We have had some difficulty getting
            the right formula for Javad sice he has a milk intolerance. We tried
            soy, but finally ended up with Pepdite 1+ which is similar to other
            foods, just no lactose or other milk products. We add 1/2 cup of
            cereal and 1 scoop of Pinnacle Juiced Protein (a protein powder we add
            that has helped with strength and weight gain). We also give him extra
            water.

            Javad never had things on his gums... so I can't offer any info on
            that!

            Shannon
          • Anne McAuliffe
            Dear Kim We gave Tom breast milk until 7 months old and then I really noticed it becoming more like grey water! And Tom s weight began to fall. I so wanted to
            Message 5 of 8 , Feb 22, 2006
            • 0 Attachment
              Dear Kim
              We gave Tom breast milk until 7 months old and then I really noticed it
              becoming more like grey water! And Tom's weight began to fall. I so wanted
              to give him the protection of breast milk for as long as possible, but when
              I finally had to give up I couldn't believe how much time I regained by not
              having to be attached to a pump 5 times a day!

              We started with Infatrini which is for infants (up to about 14 months).
              Tom's weight came right back up but he started to get prone to constipation.
              For Tom, that was a nightmare because it really pushed up on his diaphram
              and it used to show in inexplicabe dropped sats, particulary in his sleep.
              But we managed it by recording when he'd last had a poo on the fluid charts
              we use to keep on top of how much we feed him, and we'd give him a glycerine
              suppository if we were worried (as well as starting to add flaxseed oil to
              his milk)

              When he was old enough Tom was moved on to Paedasure and Nutrini (at
              separate times). When he started each, all seemed fine for a while and then
              the most incredibly severe desaturations came out of nowhere. Sometimes in
              his sleep the only way to get him to 'breathe up' was to partly rouse him.
              There was one night in particular on Nutrini where if his nurse did not tap
              him and move him his sats would sit at 74%!!!! BUT HIS LUNGS WERE CRYSTAL
              CLEAR. Then on Nutrini (the first one we tried) one day he vomited up what
              looked like lumps of plastic!! It was a Sunday and we called a friend who's
              a paediatric consultant to come round. He was astounded and said it looked
              like undigested milk! And advised us to stop the milk straight away. (If he
              had aspirated this stuff there was no way we'd have got it out)

              Then the reason for the desats became clear - undigested milk sitting round
              his system blocking him up and restricing his diaphram. We then tried
              Paedasure, and all started fine, and then slowly but surely the desats
              started again. We then asked for Tom to go an elemental formula, Neocate
              Advance - one where the constituent parts are broken down to their core
              elements and so the body doesn't have to digest so much. One telling thing
              was that they really expected him to suffer from diahorrea on this feed as
              it can 'rush through' - and in fact we had to concentrate it up because on
              the normal concentration Tom still had constipation slightly!!!

              We don't know if Tom has a dairy intolerance (as these milks are dairy
              based) or the MTM slows down his digestive system. Whatever the cause, he
              improved dramatically in every way on Neocate Advance.

              How's that for a long story?!
              Hope Sam is continuing to do well
              With love
              Anne
              x



              -----Original Message-----
              From: Myotubular_Myopathy@yahoogroups.com
              [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of kim
              Sent: 20 February 2006 05:14
              To: Myotubular_Myopathy@yahoogroups.com
              Subject: [Myotubular_Myopathy] g tube feedings


              sam is almost 6 months now and i am starting to wonder what happens
              once we stop giving him breastmilk thru the gtube? hopefully i can
              continue with the breast milk thru early summer but it's getting
              tiring at this point and is starting to feel like 'just one more thing
              to do'. what do you give your boys for nourishment? we are starting to
              work with the nutritionist at the hospital but we havent had this
              conversation yet..she did mention formulas or pediasure...? do you
              make your own? or add anything to these formulas? he is doing okay
              weight wise, gaining, but below 5% on the height to weight chart; he
              is 15 lbs and 28 inches. i know they want to monitor his weight gain
              closely to make sure he gets up higher inbetween the 10-15% bracket.

              sam also has these things on his gums. they are like small white cyst
              like pockets. the drs call them pearls but no one can recall what the
              actual name of them is. he has them throughout his mouth. they said
              its nothing to be alarmed about, babies get them but when you arent
              taking anything by mouth they arent broken down. has anyone else had
              these? they told me to clean his gums a few times a day with a warm
              wash cloth or a bit of saline and they will eventually break down?

              thank you and hope all is well,
              kim

              a






              Yahoo! Groups Links
            • Kimberly Kowalski
              anne, thank you for the detailed response. i read your email laughing because i am pumping, reading emails and typing at the same time! like you said, i know
              Message 6 of 8 , Feb 22, 2006
              • 0 Attachment
                anne,
                thank you for the detailed response. i read your email
                laughing because i am pumping, reading emails and
                typing at the same time! like you said, i know there
                is much time to regain when i am done and it makes me
                want to stop that much more...but i struggle with the
                health benefits of the breastmilk and start to feel
                guilty. i dont know....soon enough.

                it is so interesting the response that tom had to the
                different formulas. i will keep that in mind when we
                do switch him over. i am curious about the addition of
                flaxseed oil. i know i have read somewhere before
                about adding it to their feedings...what does it do?
                and how do you determine the proper amount? you also
                mentions the coenzyme Q10 i think it was? can you tell
                me what this is as well?

                thanks anne,
                k

                --- Anne McAuliffe <anne@...> wrote:

                > Dear Kim
                > We gave Tom breast milk until 7 months old and then
                > I really noticed it
                > becoming more like grey water! And Tom's weight
                > began to fall. I so wanted
                > to give him the protection of breast milk for as
                > long as possible, but when
                > I finally had to give up I couldn't believe how much
                > time I regained by not
                > having to be attached to a pump 5 times a day!
                >
                > We started with Infatrini which is for infants (up
                > to about 14 months).
                > Tom's weight came right back up but he started to
                > get prone to constipation.
                > For Tom, that was a nightmare because it really
                > pushed up on his diaphram
                > and it used to show in inexplicabe dropped sats,
                > particulary in his sleep.
                > But we managed it by recording when he'd last had a
                > poo on the fluid charts
                > we use to keep on top of how much we feed him, and
                > we'd give him a glycerine
                > suppository if we were worried (as well as starting
                > to add flaxseed oil to
                > his milk)
                >
                > When he was old enough Tom was moved on to Paedasure
                > and Nutrini (at
                > separate times). When he started each, all seemed
                > fine for a while and then
                > the most incredibly severe desaturations came out of
                > nowhere. Sometimes in
                > his sleep the only way to get him to 'breathe up'
                > was to partly rouse him.
                > There was one night in particular on Nutrini where
                > if his nurse did not tap
                > him and move him his sats would sit at 74%!!!! BUT
                > HIS LUNGS WERE CRYSTAL
                > CLEAR. Then on Nutrini (the first one we tried) one
                > day he vomited up what
                > looked like lumps of plastic!! It was a Sunday and
                > we called a friend who's
                > a paediatric consultant to come round. He was
                > astounded and said it looked
                > like undigested milk! And advised us to stop the
                > milk straight away. (If he
                > had aspirated this stuff there was no way we'd have
                > got it out)
                >
                > Then the reason for the desats became clear -
                > undigested milk sitting round
                > his system blocking him up and restricing his
                > diaphram. We then tried
                > Paedasure, and all started fine, and then slowly but
                > surely the desats
                > started again. We then asked for Tom to go an
                > elemental formula, Neocate
                > Advance - one where the constituent parts are broken
                > down to their core
                > elements and so the body doesn't have to digest so
                > much. One telling thing
                > was that they really expected him to suffer from
                > diahorrea on this feed as
                > it can 'rush through' - and in fact we had to
                > concentrate it up because on
                > the normal concentration Tom still had constipation
                > slightly!!!
                >
                > We don't know if Tom has a dairy intolerance (as
                > these milks are dairy
                > based) or the MTM slows down his digestive system.
                > Whatever the cause, he
                > improved dramatically in every way on Neocate
                > Advance.
                >
                > How's that for a long story?!
                > Hope Sam is continuing to do well
                > With love
                > Anne
                > x
                >
                >
                >
                > -----Original Message-----
                > From: Myotubular_Myopathy@yahoogroups.com
                > [mailto:Myotubular_Myopathy@yahoogroups.com] On
                > Behalf Of kim
                > Sent: 20 February 2006 05:14
                > To: Myotubular_Myopathy@yahoogroups.com
                > Subject: [Myotubular_Myopathy] g tube feedings
                >
                >
                > sam is almost 6 months now and i am starting to
                > wonder what happens
                > once we stop giving him breastmilk thru the gtube?
                > hopefully i can
                > continue with the breast milk thru early summer but
                > it's getting
                > tiring at this point and is starting to feel like
                > 'just one more thing
                > to do'. what do you give your boys for nourishment?
                > we are starting to
                > work with the nutritionist at the hospital but we
                > havent had this
                > conversation yet..she did mention formulas or
                > pediasure...? do you
                > make your own? or add anything to these formulas? he
                > is doing okay
                > weight wise, gaining, but below 5% on the height to
                > weight chart; he
                > is 15 lbs and 28 inches. i know they want to monitor
                > his weight gain
                > closely to make sure he gets up higher inbetween the
                > 10-15% bracket.
                >
                > sam also has these things on his gums. they are like
                > small white cyst
                > like pockets. the drs call them pearls but no one
                > can recall what the
                > actual name of them is. he has them throughout his
                > mouth. they said
                > its nothing to be alarmed about, babies get them but
                > when you arent
                > taking anything by mouth they arent broken down. has
                > anyone else had
                > these? they told me to clean his gums a few times a
                > day with a warm
                > wash cloth or a bit of saline and they will
                > eventually break down?
                >
                > thank you and hope all is well,
                > kim
                >
                > a
                >
                >
                >
                >
                >
                >
                > Yahoo! Groups Links
                >
                >
                >
                >
                >
                >
                >


                __________________________________________________
                Do You Yahoo!?
                Tired of spam? Yahoo! Mail has the best spam protection around
                http://mail.yahoo.com
              • Tina Hopkins
                Steph takes pediasure with fiber through her g- tube. For costipation she get Mirlax mixed as directed but is only given 3 oz of the mixture every night ...
                Message 7 of 8 , Feb 23, 2006
                • 0 Attachment
                  Steph takes pediasure with fiber through her g- tube.
                  For costipation she get Mirlax mixed as directed but
                  is only given 3 oz of the mixture every night

                  --- Kimberly Kowalski <kimmyk47@...> wrote:

                  > anne,
                  > thank you for the detailed response. i read your
                  > email
                  > laughing because i am pumping, reading emails and
                  > typing at the same time! like you said, i know there
                  > is much time to regain when i am done and it makes
                  > me
                  > want to stop that much more...but i struggle with
                  > the
                  > health benefits of the breastmilk and start to feel
                  > guilty. i dont know....soon enough.
                  >
                  > it is so interesting the response that tom had to
                  > the
                  > different formulas. i will keep that in mind when we
                  > do switch him over. i am curious about the addition
                  > of
                  > flaxseed oil. i know i have read somewhere before
                  > about adding it to their feedings...what does it do?
                  > and how do you determine the proper amount? you also
                  > mentions the coenzyme Q10 i think it was? can you
                  > tell
                  > me what this is as well?
                  >
                  > thanks anne,
                  > k
                  >
                  > --- Anne McAuliffe <anne@...> wrote:
                  >
                  > > Dear Kim
                  > > We gave Tom breast milk until 7 months old and
                  > then
                  > > I really noticed it
                  > > becoming more like grey water! And Tom's weight
                  > > began to fall. I so wanted
                  > > to give him the protection of breast milk for as
                  > > long as possible, but when
                  > > I finally had to give up I couldn't believe how
                  > much
                  > > time I regained by not
                  > > having to be attached to a pump 5 times a day!
                  > >
                  > > We started with Infatrini which is for infants (up
                  > > to about 14 months).
                  > > Tom's weight came right back up but he started to
                  > > get prone to constipation.
                  > > For Tom, that was a nightmare because it really
                  > > pushed up on his diaphram
                  > > and it used to show in inexplicabe dropped sats,
                  > > particulary in his sleep.
                  > > But we managed it by recording when he'd last had
                  > a
                  > > poo on the fluid charts
                  > > we use to keep on top of how much we feed him, and
                  > > we'd give him a glycerine
                  > > suppository if we were worried (as well as
                  > starting
                  > > to add flaxseed oil to
                  > > his milk)
                  > >
                  > > When he was old enough Tom was moved on to
                  > Paedasure
                  > > and Nutrini (at
                  > > separate times). When he started each, all seemed
                  > > fine for a while and then
                  > > the most incredibly severe desaturations came out
                  > of
                  > > nowhere. Sometimes in
                  > > his sleep the only way to get him to 'breathe up'
                  > > was to partly rouse him.
                  > > There was one night in particular on Nutrini where
                  > > if his nurse did not tap
                  > > him and move him his sats would sit at 74%!!!! BUT
                  > > HIS LUNGS WERE CRYSTAL
                  > > CLEAR. Then on Nutrini (the first one we tried)
                  > one
                  > > day he vomited up what
                  > > looked like lumps of plastic!! It was a Sunday
                  > and
                  > > we called a friend who's
                  > > a paediatric consultant to come round. He was
                  > > astounded and said it looked
                  > > like undigested milk! And advised us to stop the
                  > > milk straight away. (If he
                  > > had aspirated this stuff there was no way we'd
                  > have
                  > > got it out)
                  > >
                  > > Then the reason for the desats became clear -
                  > > undigested milk sitting round
                  > > his system blocking him up and restricing his
                  > > diaphram. We then tried
                  > > Paedasure, and all started fine, and then slowly
                  > but
                  > > surely the desats
                  > > started again. We then asked for Tom to go an
                  > > elemental formula, Neocate
                  > > Advance - one where the constituent parts are
                  > broken
                  > > down to their core
                  > > elements and so the body doesn't have to digest so
                  > > much. One telling thing
                  > > was that they really expected him to suffer from
                  > > diahorrea on this feed as
                  > > it can 'rush through' - and in fact we had to
                  > > concentrate it up because on
                  > > the normal concentration Tom still had
                  > constipation
                  > > slightly!!!
                  > >
                  > > We don't know if Tom has a dairy intolerance (as
                  > > these milks are dairy
                  > > based) or the MTM slows down his digestive system.
                  >
                  > > Whatever the cause, he
                  > > improved dramatically in every way on Neocate
                  > > Advance.
                  > >
                  > > How's that for a long story?!
                  > > Hope Sam is continuing to do well
                  > > With love
                  > > Anne
                  > > x
                  > >
                  > >
                  > >
                  > > -----Original Message-----
                  > > From: Myotubular_Myopathy@yahoogroups.com
                  > > [mailto:Myotubular_Myopathy@yahoogroups.com] On
                  > > Behalf Of kim
                  > > Sent: 20 February 2006 05:14
                  > > To: Myotubular_Myopathy@yahoogroups.com
                  > > Subject: [Myotubular_Myopathy] g tube feedings
                  > >
                  > >
                  > > sam is almost 6 months now and i am starting to
                  > > wonder what happens
                  > > once we stop giving him breastmilk thru the gtube?
                  > > hopefully i can
                  > > continue with the breast milk thru early summer
                  > but
                  > > it's getting
                  > > tiring at this point and is starting to feel like
                  > > 'just one more thing
                  > > to do'. what do you give your boys for
                  > nourishment?
                  > > we are starting to
                  > > work with the nutritionist at the hospital but we
                  > > havent had this
                  > > conversation yet..she did mention formulas or
                  > > pediasure...? do you
                  > > make your own? or add anything to these formulas?
                  > he
                  > > is doing okay
                  > > weight wise, gaining, but below 5% on the height
                  > to
                  > > weight chart; he
                  > > is 15 lbs and 28 inches. i know they want to
                  > monitor
                  > > his weight gain
                  > > closely to make sure he gets up higher inbetween
                  > the
                  > > 10-15% bracket.
                  > >
                  > > sam also has these things on his gums. they are
                  > like
                  > > small white cyst
                  > > like pockets. the drs call them pearls but no one
                  > > can recall what the
                  > > actual name of them is. he has them throughout his
                  > > mouth. they said
                  > > its nothing to be alarmed about, babies get them
                  > but
                  > > when you arent
                  > > taking anything by mouth they arent broken down.
                  > has
                  > > anyone else had
                  > > these? they told me to clean his gums a few times
                  > a
                  > > day with a warm
                  > > wash cloth or a bit of saline and they will
                  > > eventually break down?
                  > >
                  > > thank you and hope all is well,
                  > > kim
                  > >
                  > > a
                  > >
                  > >
                  > >
                  > >
                  > >
                  > >
                  > > Yahoo! Groups Links
                  > >
                  > >
                  > >
                  > >
                  > >
                  > >
                  > >
                  >
                  === message truncated ===


                  __________________________________________________
                  Do You Yahoo!?
                  Tired of spam? Yahoo! Mail has the best spam protection around
                  http://mail.yahoo.com
                • Anne McAuliffe
                  Kim I ve been trying to email you to answer this question - can you email my private address anne@olennox.com to see if I can get the answer to you that way!
                  Message 8 of 8 , Mar 6, 2006
                  • 0 Attachment
                    Kim
                    I've been trying to email you to answer this question - can you email my
                    private address anne@... to see if I can get the answer to you that
                    way!
                    Best wishes
                    Anne

                    -----Original Message-----
                    From: Myotubular_Myopathy@yahoogroups.com
                    [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Kimberly Kowalski
                    Sent: 23 February 2006 01:59
                    To: Myotubular_Myopathy@yahoogroups.com
                    Subject: RE: [Myotubular_Myopathy] g tube feedings

                    anne,
                    thank you for the detailed response. i read your email
                    laughing because i am pumping, reading emails and
                    typing at the same time! like you said, i know there
                    is much time to regain when i am done and it makes me
                    want to stop that much more...but i struggle with the
                    health benefits of the breastmilk and start to feel
                    guilty. i dont know....soon enough.

                    it is so interesting the response that tom had to the
                    different formulas. i will keep that in mind when we
                    do switch him over. i am curious about the addition of
                    flaxseed oil. i know i have read somewhere before
                    about adding it to their feedings...what does it do?
                    and how do you determine the proper amount? you also
                    mentions the coenzyme Q10 i think it was? can you tell
                    me what this is as well?

                    thanks anne,
                    k

                    --- Anne McAuliffe <anne@...> wrote:

                    > Dear Kim
                    > We gave Tom breast milk until 7 months old and then
                    > I really noticed it
                    > becoming more like grey water! And Tom's weight
                    > began to fall. I so wanted
                    > to give him the protection of breast milk for as
                    > long as possible, but when
                    > I finally had to give up I couldn't believe how much
                    > time I regained by not
                    > having to be attached to a pump 5 times a day!
                    >
                    > We started with Infatrini which is for infants (up
                    > to about 14 months).
                    > Tom's weight came right back up but he started to
                    > get prone to constipation.
                    > For Tom, that was a nightmare because it really
                    > pushed up on his diaphram
                    > and it used to show in inexplicabe dropped sats,
                    > particulary in his sleep.
                    > But we managed it by recording when he'd last had a
                    > poo on the fluid charts
                    > we use to keep on top of how much we feed him, and
                    > we'd give him a glycerine
                    > suppository if we were worried (as well as starting
                    > to add flaxseed oil to
                    > his milk)
                    >
                    > When he was old enough Tom was moved on to Paedasure
                    > and Nutrini (at
                    > separate times). When he started each, all seemed
                    > fine for a while and then
                    > the most incredibly severe desaturations came out of
                    > nowhere. Sometimes in
                    > his sleep the only way to get him to 'breathe up'
                    > was to partly rouse him.
                    > There was one night in particular on Nutrini where
                    > if his nurse did not tap
                    > him and move him his sats would sit at 74%!!!! BUT
                    > HIS LUNGS WERE CRYSTAL
                    > CLEAR. Then on Nutrini (the first one we tried) one
                    > day he vomited up what
                    > looked like lumps of plastic!! It was a Sunday and
                    > we called a friend who's
                    > a paediatric consultant to come round. He was
                    > astounded and said it looked
                    > like undigested milk! And advised us to stop the
                    > milk straight away. (If he
                    > had aspirated this stuff there was no way we'd have
                    > got it out)
                    >
                    > Then the reason for the desats became clear -
                    > undigested milk sitting round
                    > his system blocking him up and restricing his
                    > diaphram. We then tried
                    > Paedasure, and all started fine, and then slowly but
                    > surely the desats
                    > started again. We then asked for Tom to go an
                    > elemental formula, Neocate
                    > Advance - one where the constituent parts are broken
                    > down to their core
                    > elements and so the body doesn't have to digest so
                    > much. One telling thing
                    > was that they really expected him to suffer from
                    > diahorrea on this feed as
                    > it can 'rush through' - and in fact we had to
                    > concentrate it up because on
                    > the normal concentration Tom still had constipation
                    > slightly!!!
                    >
                    > We don't know if Tom has a dairy intolerance (as
                    > these milks are dairy
                    > based) or the MTM slows down his digestive system.
                    > Whatever the cause, he
                    > improved dramatically in every way on Neocate
                    > Advance.
                    >
                    > How's that for a long story?!
                    > Hope Sam is continuing to do well
                    > With love
                    > Anne
                    > x
                    >
                    >
                    >
                    > -----Original Message-----
                    > From: Myotubular_Myopathy@yahoogroups.com
                    > [mailto:Myotubular_Myopathy@yahoogroups.com] On
                    > Behalf Of kim
                    > Sent: 20 February 2006 05:14
                    > To: Myotubular_Myopathy@yahoogroups.com
                    > Subject: [Myotubular_Myopathy] g tube feedings
                    >
                    >
                    > sam is almost 6 months now and i am starting to
                    > wonder what happens
                    > once we stop giving him breastmilk thru the gtube?
                    > hopefully i can
                    > continue with the breast milk thru early summer but
                    > it's getting
                    > tiring at this point and is starting to feel like
                    > 'just one more thing
                    > to do'. what do you give your boys for nourishment?
                    > we are starting to
                    > work with the nutritionist at the hospital but we
                    > havent had this
                    > conversation yet..she did mention formulas or
                    > pediasure...? do you
                    > make your own? or add anything to these formulas? he
                    > is doing okay
                    > weight wise, gaining, but below 5% on the height to
                    > weight chart; he
                    > is 15 lbs and 28 inches. i know they want to monitor
                    > his weight gain
                    > closely to make sure he gets up higher inbetween the
                    > 10-15% bracket.
                    >
                    > sam also has these things on his gums. they are like
                    > small white cyst
                    > like pockets. the drs call them pearls but no one
                    > can recall what the
                    > actual name of them is. he has them throughout his
                    > mouth. they said
                    > its nothing to be alarmed about, babies get them but
                    > when you arent
                    > taking anything by mouth they arent broken down. has
                    > anyone else had
                    > these? they told me to clean his gums a few times a
                    > day with a warm
                    > wash cloth or a bit of saline and they will
                    > eventually break down?
                    >
                    > thank you and hope all is well,
                    > kim
                    >
                    > a
                    >
                    >
                    >
                    >
                    >
                    >
                    > Yahoo! Groups Links
                    >
                    >
                    >
                    >
                    >
                    >
                    >


                    __________________________________________________
                    Do You Yahoo!?
                    Tired of spam? Yahoo! Mail has the best spam protection around
                    http://mail.yahoo.com



                    Yahoo! Groups Links
                  Your message has been successfully submitted and would be delivered to recipients shortly.