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need some advice

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  • mai-lis Hagen
     hello, im Mai-Lis Hagen, mother to Markus who is soon 6 yrs old with mtm. we are doing great but i have a few things i need to speak and hear about and
    Message 1 of 10 , Jun 14 1:55 PM

       hello, im Mai-Lis Hagen, mother to Markus who is soon 6 yrs old with mtm. we are doing great but i have a few things i need to speak and hear about and maybe get some advices..

      I need some advice or maybe someone else have the same problem..

       

       

      its like this

       

      markus have a tracheostomi size 5.5 8.0 bivona tube.and  ventilated at night

      he have all the night leak in the ventilater and the doctors here try to order a new tube (half cuffed) (that you could blow a few ml of water into, it helped in the leak,but after a few days Markus starts to hurt in the side of the tube. so we took it out, and insert the regular tube he is using..but the doctors here want to try again to put it inside to help against the leak.. but my worries is that Markus will still have pains with that, or do anyone had the same and can tell me a little about it??

       

      another thing:  he was suppose to operate down his testicles, but the maintain hospital here in norway did not want to operate him, because the breathing issues, and they also told me that maybe there was no need to take them down because of the mtm..do your boys have the testicles down? or what is clever to do?? i feel so alone here in this country trying to know best but its not easy all of the time so i would be happy for some advices..

       

      many times i feel markus should go again to england to get a better treatment. since they really dont know so much here about it.. the maintain hospital has always been negative to mtm.. and that worries me

       

      the other thing is that his feet is very tight in the acilles. he is up everyday and stay up stright in a walker. any other advice against cold feets??

       

      otherwise i try to get more physioterapy, hopefully he will get more.

       

      so the last thing.. markus voice is sometimes very strong and mostly very low. i saw into his mount aday and saw that in the sides in the back of the mounth it was very swallow. but it did not hurt.. the doctors here said that they were big, but if there is no pain they not want to take them out, maybe that is the reason for the low voice..

       

      thank you so much for reading..

       

      all the best, mai-lis hagen

       

       


    • dslawton1
      Hi Mai-Lis, My understanding is that they normally will operate on undescended testicles for two reasons. One is to help maintain fertility and the other is
      Message 2 of 10 , Jun 14 4:09 PM
        Hi Mai-Lis,

        My understanding is that they normally will operate on undescended
        testicles for two reasons. One is to help maintain fertility and the
        other is because a testes in the abdominal area can be dangerous for
        a child who would be involved in contact sports.

        Did Markus' testicles ever descend? My son's did and then one
        ascended. We choose to have that one fixed at the same time that he
        had four teeth extracted. Mitchell had always handled anesthesia
        well so this helped in our decision making. If Mitchell's testicles
        had never descended we probably wouldn't have had the surgery done.
        However, we felt that in order to preserve his fertility we decided
        to go ahead.

        Hope that this helps. These decisions are never easy.

        Donna
        -- In Myotubular_Myopathy@yahoogroups.com, mai-lis Hagen
        <mailis.hagen@...> wrote:
        >
        >  hello, im Mai-Lis Hagen, mother to Markus who is soon 6 yrs
        old with mtm. we are doing great but i have a few things i need to
        speak and hear about and maybe get some advices..
        > I need some advice or maybe someone else have the same problem..
        >  
        >  
        > its like this
        >  
        > markus have a tracheostomi size 5.5 8.0 bivona tube.and
         ventilated at night
        > he have all the night leak in the ventilater and the doctors here
        try to order a new tube (half cuffed) (that you could blow a few ml
        of water into, it helped in the leak,but after a few days Markus
        starts to hurt in the side of the tube. so we took it out, and insert
        the regular tube he is using..but the doctors here want to try again
        to put it inside to help against the leak.. but my worries is that
        Markus will still have pains with that, or do anyone had the same and
        can tell me a little about it??
        >  
        > another thing:  he was suppose to operate down his testicles,
        but the maintain hospital here in norway did not want to operate him,
        because the breathing issues, and they also told me that maybe there
        was no need to take them down because of the mtm..do your boys have
        the testicles down? or what is clever to do?? i feel so alone
        here in this country trying to know best but its not easy all of the
        time so i would be happy for some advices..
        >  
        > many times i feel markus should go again to england to get a better
        treatment. since they really dont know so much here about it.. the
        maintain hospital has always been negative to mtm.. and that worries
        me
        >  
        > the other thing is that his feet is very tight in the acilles. he
        is up everyday and stay up stright in a walker. any other advice
        against cold feets??
        >  
        > otherwise i try to get more physioterapy, hopefully he will get
        more.
        >  
        > so the last thing.. markus voice is sometimes very strong and
        mostly very low. i saw into his mount aday and saw that in the sides
        in the back of the mounth it was very swallow. but it did not hurt..
        the doctors here said that they were big, but if there is no pain
        they not want to take them out, maybe that is the reason for the low
        voice..
        >  
        > thank you so much for reading..
        >  
        > all the best, mai-lis hagen
        >  
        >  
        >
      • Betsy Grant
        Hello Mai-Lis, My son has the undescended testicle as well, it has not been operated on I believe just because it is a low priority. My son is 11 years old,
        Message 3 of 10 , Jun 14 4:12 PM
          Hello Mai-Lis,
          My son has the undescended testicle as well, it has not been operated on I believe just because it is a low priority. My son is 11 years old, maybe soon I should have him have the surgery.
           
          We use a trach that is a soft plastic, no cuff,  so it does leak at night when he sleeps, but we just reset the numbers on the vent so that he gets more air with each breath, and that makes up for the leak. When he awakes, we turn it down again.
           
          Betsy

          On Sat, Jun 14, 2008 at 4:55 PM, mai-lis Hagen <mailis.hagen@...> wrote:

           hello, im Mai-Lis Hagen, mother to Markus who is soon 6 yrs old with mtm. we are doing great but i have a few things i need to speak and hear about and maybe get some advices..

          I need some advice or maybe someone else have the same problem..

           

           

          its like this

           

          markus have a tracheostomi size 5.5 8.0 bivona tube.and  ventilated at night

          he have all the night leak in the ventilater and the doctors here try to order a new tube (half cuffed) (that you could blow a few ml of water into, it helped in the leak,but after a few days Markus starts to hurt in the side of the tube. so we took it out, and insert the regular tube he is using..but the doctors here want to try again to put it inside to help against the leak.. but my worries is that Markus will still have pains with that, or do anyone had the same and can tell me a little about it??

           

          another thing:  he was suppose to operate down his testicles, but the maintain hospital here in norway did not want to operate him, because the breathing issues, and they also told me that maybe there was no need to take them down because of the mtm..do your boys have the testicles down? or what is clever to do?? i feel so alone here in this country trying to know best but its not easy all of the time so i would be happy for some advices..

           

          many times i feel markus should go again to england to get a better treatment. since they really dont know so much here about it.. the maintain hospital has always been negative to mtm.. and that worries me

           

          the other thing is that his feet is very tight in the acilles. he is up everyday and stay up stright in a walker. any other advice against cold feets??

           

          otherwise i try to get more physioterapy, hopefully he will get more.

           

          so the last thing.. markus voice is sometimes very strong and mostly very low. i saw into his mount aday and saw that in the sides in the back of the mounth it was very swallow. but it did not hurt.. the doctors here said that they were big, but if there is no pain they not want to take them out, maybe that is the reason for the low voice..

           

          thank you so much for reading..

           

          all the best, mai-lis hagen

           

           



        • Sheallyn
          another thing: he was suppose to operate down his testicles, but the maintain hospital here in norway did not want to operate him, because the breathing
          Message 4 of 10 , Jun 14 4:48 PM
            another thing: he was suppose to operate down his testicles, but
            the maintain hospital here in norway did not want to operate him,
            because the breathing issues, and they also told me that maybe there
            was no need to take them down because of the mtm..do your boys have
            the testicles down? or what is clever to do?? i feel so alone here
            in this country trying to know best but its not easy all of the time
            so i would be happy for some advices..



            In reference to this part of your post, I have been told by several
            doctor's that if the testes have not dropped by the age of 3 then
            they will most likely need to be brought down through surgery. I can
            see the doctor's point about not wanting to put your son under to
            fix this as it can cause risk, with anyone really but more so as our
            boys have respiratory issues already... Maybe see if they will do an
            ultrasound? If his testes are not in the abdominal cavity then he
            should be fine ... if they are it could be causing Marcus some
            discomfort. For them to say though, that it shouldn't be done
            because he is a MTM child is ridiclous to me. Just because he may
            not conceive his own children, does not mean he should be in any
            kind of pain ... Again, I would really push for the ultrasound then
            you know that he is ok!


            As for his feet ... maybe they are tight because his weight is
            supported on them all day? You can sit him on his bum on the couch
            maybe, or whatever works for you both and do some range of motion
            with him. Just place the flat of his foot in the palm of your hand
            and gently roll his ankle in slow soft circles ... I'm sure he'd
            enjoy the feeling of it and it should help with his soreness ...
            It's a good thing to do daily anyway, you can work his legs and arms
            in circles as well :)


            hope this helped you some!


            welcome to the group as well :<)



            Sheallyn
          • mai-lis Hagen
            hi everyone :) thank you for the words :) he already had three ultrasound,and they didnt find the testicles. so he is not in pain at all with that.  
            Message 5 of 10 , Jun 15 1:48 AM

              hi everyone :)

              thank you for the words :)

              he already had three ultrasound,and they didnt find the testicles. so he is not in pain at all with that.

               

              about his legs, he dont use so much weight on his feet at all, mostly he is in his electric weelchair. and sitting and laying down. i`ve been trying massage with hot oil.. that loosen the tightness a bit. so i guess i`m gonna continuing doing that :)

              --- On Sat, 6/14/08, Sheallyn <sheallyn73@...> wrote:

              From: Sheallyn <sheallyn73@...>
              Subject: [Myotubular_Myopathy] Re: need some advice
              To: Myotubular_Myopathy@yahoogroups.com
              Date: Saturday, June 14, 2008, 11:48 PM

              another thing: he was suppose to operate down his testicles, but
              the maintain hospital here in norway did not want to operate him,
              because the breathing issues, and they also told me that maybe there
              was no need to take them down because of the mtm..do your boys have
              the testicles down? or what is clever to do?? i feel so alone here
              in this country trying to know best but its not easy all of the time
              so i would be happy for some advices..

              In reference to this part of your post, I have been told by several
              doctor's that if the testes have not dropped by the age of 3 then
              they will most likely need to be brought down through surgery. I can
              see the doctor's point about not wanting to put your son under to
              fix this as it can cause risk, with anyone really but more so as our
              boys have respiratory issues already... Maybe see if they will do an
              ultrasound? If his testes are not in the abdominal cavity then he
              should be fine ... if they are it could be causing Marcus some
              discomfort. For them to say though, that it shouldn't be done
              because he is a MTM child is ridiclous to me. Just because he may
              not conceive his own children, does not mean he should be in any
              kind of pain ... Again, I would really push for the ultrasound then
              you know that he is ok!

              As for his feet ... maybe they are tight because his weight is
              supported on them all day? You can sit him on his bum on the couch
              maybe, or whatever works for you both and do some range of motion
              with him. Just place the flat of his foot in the palm of your hand
              and gently roll his ankle in slow soft circles ... I'm sure he'd
              enjoy the feeling of it and it should help with his soreness ...
              It's a good thing to do daily anyway, you can work his legs and arms
              in circles as well :)

              hope this helped you some!

              welcome to the group as well :<)

              Sheallyn


            • mai-lis Hagen
              hello :) no they never descend. ... From: dslawton1 <dslawton@comcast.net> Subject: [Myotubular_Myopathy] Re: need some advice To:
              Message 6 of 10 , Jun 15 1:51 AM

                hello :)

                no they never descend.

                --- On Sat, 6/14/08, dslawton1 <dslawton@...> wrote:

                From: dslawton1 <dslawton@...>
                Subject: [Myotubular_Myopathy] Re: need some advice
                To: Myotubular_Myopathy@yahoogroups.com
                Date: Saturday, June 14, 2008, 11:09 PM

                Hi Mai-Lis,

                My understanding is that they normally will operate on undescended
                testicles for two reasons. One is to help maintain fertility and the
                other is because a testes in the abdominal area can be dangerous for
                a child who would be involved in contact sports.

                Did Markus' testicles ever descend? My son's did and then one
                ascended. We choose to have that one fixed at the same time that he
                had four teeth extracted. Mitchell had always handled anesthesia
                well so this helped in our decision making. If Mitchell's testicles
                had never descended we probably wouldn't have had the surgery done.
                However, we felt that in order to preserve his fertility we decided
                to go ahead.

                Hope that this helps. These decisions are never easy.

                Donna
                -- In Myotubular_Myopathy @yahoogroups. com, mai-lis Hagen
                <mailis.hagen@ ...> wrote:
                >
                > &nbsp;hello, im Mai-Lis Hagen, mother to Markus who is soon 6 yrs
                old with mtm. we are doing great but i have a few things i need to
                speak and hear about and maybe get some advices..
                > I need some advice or maybe someone else have the same problem..
                > &nbsp;
                > &nbsp;
                > its like this
                > &nbsp;
                > markus&nbsp; have a tracheostomi& nbsp;size 5.5 8.0 bivona tube.and
                &nbsp;ventilated at night
                > he have all the night leak in the ventilater and the doctors here
                try to order a new tube (half cuffed) (that you could blow a few ml
                of water into, it helped in the leak,but after a few days Markus
                starts to hurt in the side of the tube. so we took it out, and insert
                the regular tube he is using..but the doctors here want to try again
                to put it inside to help against the leak.. but my worries is that
                Markus will still have pains with that, or do anyone had the same and
                can tell me a little about it??
                > &nbsp;
                > another thing:&nbsp; he was suppose to operate down his testicles,
                but the maintain hospital here in norway did not want to operate him,
                because the breathing issues, and they also told me that maybe there
                was no need to take them down because of the mtm..do your boys have
                the testicles down?&nbsp;or what is clever to do?? i feel so alone
                here in this country trying to know best but its not easy all of the
                time so i would be happy for some advices..
                > &nbsp;
                > many times i feel markus should go again to england to get a better
                treatment. since they really dont know so much here about it.. the
                maintain hospital has always been negative to mtm.. and that worries
                me
                > &nbsp;
                > the other thing is that his feet is very tight in the acilles. he
                is up everyday and stay up stright in a walker. any other advice
                against cold feets??
                > &nbsp;
                > otherwise i try to get more physioterapy, hopefully he will get
                more.
                > &nbsp;
                > so the last thing.. markus voice is sometimes very strong and
                mostly very low. i saw into his mount aday and saw that in the sides
                in the back of the mounth it was very swallow. but it did not hurt..
                the doctors here said that they were big, but if there is no pain
                they not want to take them out, maybe that is the reason for the low
                voice..
                > &nbsp;
                > thank you so much for reading..
                > &nbsp;
                > all the best, mai-lis hagen
                > &nbsp;
                > &nbsp;
                >


              • mai-lis Hagen
                witch are the mark on the tube your son is using? and is he using the ventilater in the day also? thank you so much for the words :)   have a nice day
                Message 7 of 10 , Jun 15 1:52 AM

                  witch are the mark on the tube your son is using? and is he using the ventilater in the day also? thank you so much for the words :)

                   

                  have a nice day mai-lis

                  --- On Sat, 6/14/08, Betsy Grant <betsy@...> wrote:

                  From: Betsy Grant <betsy@...>
                  Subject: Re: [Myotubular_Myopathy] need some advice
                  To: Myotubular_Myopathy@yahoogroups.com
                  Date: Saturday, June 14, 2008, 11:12 PM

                  Hello Mai-Lis,
                  My son has the undescended testicle as well, it has not been operated on I believe just because it is a low priority. My son is 11 years old, maybe soon I should have him have the surgery.
                   
                  We use a trach that is a soft plastic, no cuff,  so it does leak at night when he sleeps, but we just reset the numbers on the vent so that he gets more air with each breath, and that makes up for the leak. When he awakes, we turn it down again.
                   
                  Betsy

                  On Sat, Jun 14, 2008 at 4:55 PM, mai-lis Hagen <mailis.hagen@ yahoo.com> wrote:

                   hello, im Mai-Lis Hagen, mother to Markus who is soon 6 yrs old with mtm. we are doing great but i have a few things i need to speak and hear about and maybe get some advices..

                  I need some advice or maybe someone else have the same problem..

                   

                   

                  its like this

                   

                  markus have a tracheostomi size 5.5 8.0 bivona tube.and  ventilated at night

                  he have all the night leak in the ventilater and the doctors here try to order a new tube (half cuffed) (that you could blow a few ml of water into, it helped in the leak,but after a few days Markus starts to hurt in the side of the tube. so we took it out, and insert the regular tube he is using..but the doctors here want to try again to put it inside to help against the leak.. but my worries is that Markus will still have pains with that, or do anyone had the same and can tell me a little about it??

                   

                  another thing:  he was suppose to operate down his testicles, but the maintain hospital here in norway did not want to operate him, because the breathing issues, and they also told me that maybe there was no need to take them down because of the mtm..do your boys have the testicles down? or what is clever to do?? i feel so alone here in this country trying to know best but its not easy all of the time so i would be happy for some advices..

                   

                  many times i feel markus should go again to england to get a better treatment. since they really dont know so much here about it.. the maintain hospital has always been negative to mtm.. and that worries me

                   

                  the other thing is that his feet is very tight in the acilles. he is up everyday and stay up stright in a walker. any other advice against cold feets??

                   

                  otherwise i try to get more physioterapy, hopefully he will get more.

                   

                  so the last thing.. markus voice is sometimes very strong and mostly very low. i saw into his mount aday and saw that in the sides in the back of the mounth it was very swallow. but it did not hurt.. the doctors here said that they were big, but if there is no pain they not want to take them out, maybe that is the reason for the low voice..

                   

                  thank you so much for reading..

                   

                  all the best, mai-lis hagen

                   

                   




                • rachel_wrigley
                  ... hiya my son regan has tight feet and ankles too hes complaning of a lot pain his physio had a look at him the other day he has to have night splints which
                  Message 8 of 10 , Jun 15 3:21 AM
                    --- In Myotubular_Myopathy@yahoogroups.com, mai-lis Hagen
                    hiya my son regan has tight feet and ankles too hes complaning of a
                    lot pain his physio had a look at him the other day he has to have
                    night splints which will help strech his muscles while hes asleep hes
                    also now been put down to recive a wheel chair and he also has to
                    have g tube

                    one thing the physio did tell me if he has pain in his legs try
                    proping his legs up on a hot water bottle making sure its not too hot
                    but we think regan is like this due to him toe walking hes constantly
                    on his tiptoes hes had pidero shoes with stifferned soles but he
                    still manages to toewalk (hed make a good ballerina hahaha)

                    take care
                    rachel


                    <mailis.hagen@...> wrote:
                    >
                    > hi everyone :)
                    > thank you for the words :)
                    > he already had three ultrasound,and they didnt find the testicles.
                    so he is not in pain at all with that.
                    >  
                    > about his legs, he dont use so much weight on his feet at all,
                    mostly he is in his electric weelchair. and sitting and laying down.
                    i`ve been trying massage with hot oil.. that loosen the tightness a
                    bit. so i guess i`m gonna continuing doing that :)
                    >
                    > --- On Sat, 6/14/08, Sheallyn sheallyn73@... wrote:
                    >
                    > From: Sheallyn sheallyn73@...
                    > Subject: [Myotubular_Myopathy] Re: need some advice
                    > To: Myotubular_Myopathy@yahoogroups.com
                    > Date: Saturday, June 14, 2008, 11:48 PM
                    >
                    >
                    >
                    >
                    >
                    >
                    > another thing: he was suppose to operate down his testicles, but
                    > the maintain hospital here in norway did not want to operate him,
                    > because the breathing issues, and they also told me that maybe
                    there
                    > was no need to take them down because of the mtm..do your boys have
                    > the testicles down? or what is clever to do?? i feel so alone here
                    > in this country trying to know best but its not easy all of the
                    time
                    > so i would be happy for some advices..
                    >
                    > In reference to this part of your post, I have been told by several
                    > doctor's that if the testes have not dropped by the age of 3 then
                    > they will most likely need to be brought down through surgery. I
                    can
                    > see the doctor's point about not wanting to put your son under to
                    > fix this as it can cause risk, with anyone really but more so as
                    our
                    > boys have respiratory issues already... Maybe see if they will do
                    an
                    > ultrasound? If his testes are not in the abdominal cavity then he
                    > should be fine ... if they are it could be causing Marcus some
                    > discomfort. For them to say though, that it shouldn't be done
                    > because he is a MTM child is ridiclous to me. Just because he may
                    > not conceive his own children, does not mean he should be in any
                    > kind of pain ... Again, I would really push for the ultrasound then
                    > you know that he is ok!
                    >
                    > As for his feet ... maybe they are tight because his weight is
                    > supported on them all day? You can sit him on his bum on the couch
                    > maybe, or whatever works for you both and do some range of motion
                    > with him. Just place the flat of his foot in the palm of your hand
                    > and gently roll his ankle in slow soft circles ... I'm sure he'd
                    > enjoy the feeling of it and it should help with his soreness ...
                    > It's a good thing to do daily anyway, you can work his legs and
                    arms
                    > in circles as well :)
                    >
                    > hope this helped you some!
                    >
                    > welcome to the group as well :<)
                    >
                    > Sheallyn
                    >
                  • dslawton1
                    If they are not causing any other problems such as pain then I guess I would look strongly at the risk vs. benefit in having the surgery. ... the ... for ...
                    Message 9 of 10 , Jun 15 9:04 AM
                      If they are not causing any other problems such as pain then I guess
                      I would look strongly at the risk vs. benefit in having the surgery.

                      --- In Myotubular_Myopathy@yahoogroups.com, mai-lis Hagen
                      <mailis.hagen@...> wrote:
                      >
                      > hello :)
                      > no they never descend.
                      >
                      > --- On Sat, 6/14/08, dslawton1 dslawton@... wrote:
                      >
                      > From: dslawton1 dslawton@...
                      > Subject: [Myotubular_Myopathy] Re: need some advice
                      > To: Myotubular_Myopathy@yahoogroups.com
                      > Date: Saturday, June 14, 2008, 11:09 PM
                      >
                      >
                      >
                      >
                      >
                      >
                      > Hi Mai-Lis,
                      >
                      > My understanding is that they normally will operate on undescended
                      > testicles for two reasons. One is to help maintain fertility and
                      the
                      > other is because a testes in the abdominal area can be dangerous
                      for
                      > a child who would be involved in contact sports.
                      >
                      > Did Markus' testicles ever descend? My son's did and then one
                      > ascended. We choose to have that one fixed at the same time that he
                      > had four teeth extracted. Mitchell had always handled anesthesia
                      > well so this helped in our decision making. If Mitchell's testicles
                      > had never descended we probably wouldn't have had the surgery done.
                      > However, we felt that in order to preserve his fertility we decided
                      > to go ahead.
                      >
                      > Hope that this helps. These decisions are never easy.
                      >
                      > Donna
                      > -- In Myotubular_Myopathy @yahoogroups. com, mai-lis Hagen
                      > <mailis.hagen@ ...> wrote:
                      > >
                      > > &nbsp;hello, im Mai-Lis Hagen, mother to Markus who is
                      soon 6 yrs
                      > old with mtm. we are doing great but i have a few things i need to
                      > speak and hear about and maybe get some advices..
                      > > I need some advice or maybe someone else have the same
                      problem..
                      > > &nbsp;
                      > > &nbsp;
                      > > its like this
                      > > &nbsp;
                      > > markus&nbsp; have a tracheostomi& nbsp;size 5.5 8.0
                      bivona tube.and
                      > &nbsp;ventilated at night
                      > > he have all the night leak in the ventilater and the doctors
                      here
                      > try to order a new tube (half cuffed) (that you could blow a few ml
                      > of water into, it helped in the leak,but after a few days Markus
                      > starts to hurt in the side of the tube. so we took it out, and
                      insert
                      > the regular tube he is using..but the doctors here want to try
                      again
                      > to put it inside to help against the leak.. but my worries is that
                      > Markus will still have pains with that, or do anyone had the same
                      and
                      > can tell me a little about it??
                      > > &nbsp;
                      > > another thing:&nbsp; he was suppose to operate down his
                      testicles,
                      > but the maintain hospital here in norway did not want to operate
                      him,
                      > because the breathing issues, and they also told me that maybe
                      there
                      > was no need to take them down because of the mtm..do your boys have
                      > the testicles down?&nbsp;or what is clever to do?? i feel so
                      alone
                      > here in this country trying to know best but its not easy all of
                      the
                      > time so i would be happy for some advices..
                      > > &nbsp;
                      > > many times i feel markus should go again to england to get a
                      better
                      > treatment. since they really dont know so much here about it.. the
                      > maintain hospital has always been negative to mtm.. and that
                      worries
                      > me
                      > > &nbsp;
                      > > the other thing is that his feet is very tight in the acilles.
                      he
                      > is up everyday and stay up stright in a walker. any other advice
                      > against cold feets??
                      > > &nbsp;
                      > > otherwise i try to get more physioterapy, hopefully he will
                      get
                      > more.
                      > > &nbsp;
                      > > so the last thing.. markus voice is sometimes very strong and
                      > mostly very low. i saw into his mount aday and saw that in the
                      sides
                      > in the back of the mounth it was very swallow. but it did not
                      hurt..
                      > the doctors here said that they were big, but if there is no pain
                      > they not want to take them out, maybe that is the reason for the
                      low
                      > voice..
                      > > &nbsp;
                      > > thank you so much for reading..
                      > > &nbsp;
                      > > all the best, mai-lis hagen
                      > > &nbsp;
                      > > &nbsp;
                      > >
                      >
                    • Sally Eubanks
                      hi mai-lis-- my son oscar had a granuloma in his trachea last month. he was also using the blocked bivona tube, but we had to switch because of two reasons:
                      Message 10 of 10 , Jun 17 10:24 AM
                        hi mai-lis--

                        my son oscar had a granuloma in his trachea last month. he was also using the blocked bivona tube, but we had to switch because of two reasons: his cuff was irritating his granuloma, and because of the granuloma the tube kept pushing out further than it should. the doctors ordered a variety of options to test on him, one of which is a rusch tube (which he is using now) and the other was a tube that was for post-surgeries, where the cuff was made of foam. supposedly the foam cuff is capable of being only partially inflated without causing any harm. anyway, these are just two options i have heard of, if that helps you at all.

                        good luck!

                        sally
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