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RE: [Myotubular_Myopathy] Briar

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  • Wright, Janice (J)
    Congratulations to his family, and to you for being such a wonderful Great Aunt. Will pray that all continues to go well. Cheers Janice ... From: minyturtle
    Message 1 of 13 , Mar 31, 2004
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      Message
      Congratulations to his family, and to you for being such a wonderful Great Aunt. Will pray that all continues to go well.
       
      Cheers
      Janice
       
       
      -----Original Message-----
      From: minyturtle [mailto:grooms4@...]
      Sent: 31 March 2004 22:30
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] Briar

      Wanted to update everyone on Briar. He came home Monday after 5
      months in the hospital since birth. Everything is fine. I will keep
      everyone posted.

      I am sure there will be many question to asked now that he is home.

      Have a great day!
      Marva




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    • redscootee@webtv.net
      Marva, How great that Briar is home!!! take care pat
      Message 2 of 13 , Apr 1, 2004
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        Marva, How great that Briar is home!!! take care pat
      • minyturtle
        Hello all! I was wondering if any of your sons have had to wear a helmet or are wearing a helmet. Briar just recently started wearing one to reshape his head.
        Message 3 of 13 , Aug 11, 2004
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          Hello all!

          I was wondering if any of your sons have had to wear a helmet or are
          wearing a helmet. Briar just recently started wearing one to reshape
          his head. They are having problems with it leaving knots and marks on
          his head. The doctors say they do not know why it is doing this. Any
          information would be appreciated. We realize that this process is
          needed but Briar is not a happy camper when wearing the helmet. I
          shouldn't say that because he is the happiest baby I have ever seen.
          Even when crying he will give you a smile. But you can tell he would
          perfer not to be wearing it. Just trying to find out what experiences
          others have had with helmets if any.

          God Bless,
          Marva
        • kristin cypher
          Hello! When Sebastian was 4 or 5 months old, his head was really flattened on the right side, and I asked our pediatrician if he needed a helmut. She said no,
          Message 4 of 13 , Aug 11, 2004
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            Hello!
             
            When Sebastian was 4 or 5 months old, his head was really flattened on the right side, and I asked our pediatrician if he needed a helmut.  She said no, that she felt his head would reshape itself.  At the time, I felt differently - I was sure that he would have a flat head forever!  However, he is now 16 months old, and aside from slightly crooked ears, his head is fine.  I know that it is a big decision to get a helmut - I don't want to dissuade you too much!  But, I also know that it can be hard to wear the helmut, so I thought I would just offer our experience.  I know it's hard when you want to do everything you can for your baby!  But, I'm glad that Sebi didn't have the helmut.  How old is Briar?  Do you think that he is past the age where you could just wait and see?  With Sebastian, I was just so used to all these interventive and proactive approaches that I didn't consider that he might work it out on his own, but he did!
             
            Just a thought - I feel bad, like I'm trying to convince you not to use it!!!  I'm really not, but it might be worth a second opinion?  Esp if it bothers/irritates him.
             
            Good luck, he sounds like a sweetheart!!
            Kristin

            minyturtle <grooms4@...> wrote:
            Hello all!

            I was wondering if any of your sons have had to wear a helmet or are
            wearing a helmet. Briar just recently started wearing one to reshape
            his head. They are having problems with it leaving knots and marks on
            his head. The doctors say they do not know why it is doing this. Any
            information would be appreciated. We realize that this process is
            needed but Briar is not a happy camper when wearing the helmet. I
            shouldn't say that because he is the happiest baby I have ever seen.
            Even when crying he will give you a smile. But you can tell he would
            perfer not to be wearing it. Just trying to find out what experiences
            others have had with helmets if any.

            God Bless,
            Marva


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          • ANN MILLER
            Hi Marva, I can not help you here. Kyle never wore a helmet. If it is leaving knots and marks and he s not happy, maybe there is something wrong with it. I
            Message 5 of 13 , Aug 11, 2004
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              Hi Marva,
               
              I can not help you here.  Kyle never wore a helmet.  If it is leaving knots and marks
              and he's not happy, maybe there is something wrong with it.  I would get a second
              opinion.  But I question everything, its my nature as a grandmother.
               
              Sorry can't help you any better.
               
              Take care,
               
              Darlene
              ----- Original Message -----
              Sent: Wednesday, August 11, 2004 11:29 AM
              Subject: [Myotubular_Myopathy] Briar

              Hello all!

              I was wondering if any of your sons have had to wear a helmet or are
              wearing a helmet. Briar just recently started wearing one to reshape
              his head. They are having problems with it leaving knots and marks on
              his head. The doctors say they do not know why it is doing this. Any
              information would be appreciated. We realize that this process is
              needed but Briar is not a happy camper when wearing the helmet. I
              shouldn't say that because he is the happiest baby I have ever seen.
              Even when crying he will give you a smile. But you can tell he would
              perfer not to be wearing it. Just trying to find out what experiences
              others have had with helmets if any.

              God Bless,
              Marva


            • Jessica Juckers
              Hi Marva, I also cannot help you out in regards of the helmet. Connie will be able to help you, as Benjamin wore a helmet for some time. We never had this as
              Message 6 of 13 , Aug 11, 2004
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                Hi Marva,  I also cannot help you out in regards of the helmet. Connie will be able to help you, as Benjamin wore a helmet for some time.
                We never had this as an option, I guess because Jack ended up with a trach, and from what I inderstand re-shaping the head is to prevent the airway from becoming narrower?

                Jessica

                minyturtle wrote:
                Hello all!

                I was wondering if any of your sons have had to wear a helmet or are
                wearing a helmet. Briar just recently started wearing one to reshape
                his head. They are having problems with it leaving knots and marks on
                his head. The doctors say they do not know why it is doing this. Any
                information would be appreciated. We realize that this process is
                needed but Briar is not a happy camper when wearing the helmet. I
                shouldn't say that because he is the happiest baby I have ever seen.
                Even when crying he will give you a smile. But you can tell he would
                perfer not to be wearing it. Just trying to find out what experiences
                others have had with helmets if any.

                God Bless,
                Marva



              • Grooms4
                Kristin Thanks for the info. Briar is going on 10 months. The doctor says that the shape of his head may cause more problems such as his eyes to bulge and his
                Message 7 of 13 , Aug 11, 2004
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                  Kristin
                   
                  Thanks for the info. Briar is going on 10 months. The doctor says that the shape of his head may cause more problems such as his eyes to bulge and his mouth to stay open. The doctors are watching closely he has to go every week for a visit. I just feel since he can not support his head at all that it is causing pressure to be put on his head from the helmet.
                   
                  By the way Briar's middle name is Sebastian.
                   
                  Again thanks for the info we appreciate anything you or any others share.
                  Marva
                  ----- Original Message -----
                  Sent: Wednesday, August 11, 2004 1:11 PM
                  Subject: Re: [Myotubular_Myopathy] Briar

                  Hello!
                   
                  When Sebastian was 4 or 5 months old, his head was really flattened on the right side, and I asked our pediatrician if he needed a helmut.  She said no, that she felt his head would reshape itself.  At the time, I felt differently - I was sure that he would have a flat head forever!  However, he is now 16 months old, and aside from slightly crooked ears, his head is fine.  I know that it is a big decision to get a helmut - I don't want to dissuade you too much!  But, I also know that it can be hard to wear the helmut, so I thought I would just offer our experience.  I know it's hard when you want to do everything you can for your baby!  But, I'm glad that Sebi didn't have the helmut.  How old is Briar?  Do you think that he is past the age where you could just wait and see?  With Sebastian, I was just so used to all these interventive and proactive approaches that I didn't consider that he might work it out on his own, b! ut he did!
                   
                  Just a thought - I feel bad, like I'm trying to convince you not to use it!!!  I'm really not, but it might be worth a second opinion?  Esp if it bothers/irritates him.
                   
                  Good luck, he sounds like a sweetheart!!
                  Kristin

                  minyturtle <grooms4@...> wrote:
                  Hello all!

                  I was wondering if any of your sons have had to wear a helmet or are
                  wearing a helmet. Briar just recently started wearing one to reshape
                  his head. They are having problems with it leaving knots and marks on
                  his head. The doctors say they do not know why it is doing this. Any
                  information would be appreciated. We realize that this process is
                  needed but Briar is not a happy camper when wearing the helmet. I
                  shouldn't say that because he is the happiest baby I have ever seen.
                  Even when crying he will give you a smile. But you can tell he would
                  perfer not to be wearing it. Just trying to find out what experiences
                  others have had with helmets if any.

                  God Bless,
                  Marva


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                • connie guinn
                  Hi, Marva! Benjamin wore a cranial remolding helmet from the age of 9 months until 16 months of age. He had a slightly flattened area on his back right
                  Message 8 of 13 , Aug 11, 2004
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                    Hi, Marva!
                    Benjamin wore a cranial remolding helmet from the age of 9 months until 16 months of age.  He had a slightly flattened area on his back right occiput, and the right side of his face was flat, too.  (He favored the right side- he would even roll to that side even when placed on his left!)  This caused the location of his ears to shift and not be equal.  It pushed back the ear on the flat side which caused the other ear to move forward.  Long term effects of his head/ face being misshappen would be that it eventually would affect his 1)  orbital (eye) bones   2) the length of his eustation tubes (this, of course, would cause problems with vertigo, ear infections, and his hearing). 
                    It was a hard decision to make because, although the helmet is not very heavy, ANY extra weight is a burden for these guys.  And, at the time, Benjamin was not able to hold his head up, yet.  However, it was truly the best decision for us!  In the end, Benjamin's head improved 100%.  The flat head has been rounded, his face no longer has a flat side, his ears are lined up perfectly (an equal distance away from his nose), and I believe it made his neck stronger because soon after discontinuing the use of the helmet, he began holding up his head and making great strides of movement.
                      If Briar does end up getting the helmet, I have a word of advice for you to give your niece concerning this.  That is, DO NOT get the type of helmet that is open on the top, foam lined, and pulls apart just on one side.  With this type of helmet, it is too easy to rub a pressure spot onto the back of his head due to the fact that he can't sit up by himself.  This sore is created by the friction the helmet produces as it is taken off of and put onto the head- it is not a pressure sore resulting from having the helmet on for sustained periods.  Instead, I would recommend the type that is a solid helmet (made of clear plastic) that hinges in the middle of the crown of the helmet.  [This type actually has two halves that you can gently place over his head and then secure on with the velcro.]
                    Benjamin did not like wearing it at first, either.  But, after a day or two, he didn't seem to mind too much.  At first, he would only tolerate it for about 30 minutes at a time.  But after about 5 or 6 days, he was up to the full time, and, eventually, he got to a maintenance schedule of 4 hours on and 1 hour off.  Because Benjamin is so hot-natured, this caused another source of concern.  We ended up putting the helmet into the refrigerater in between wearings! :D 
                    I believe the reason that Kristin's son, Sebastian, did so well without any intervention is because he is clearly a lot less affected by the MTM than Benjamin is.  Benjamin did not start sitting up by himself until he was around 16 months old, whereas Sebastian was sitting up by 9 months for sure and probably a lot earlier.  So, he didn't spend as much CONSTANT time lying down as Benjamin did.  The constancy of lying down worsens the problem.  The value of the helmet is that, even though they are still lying down for the same amount of time, the head is not allowed to continue to flatten because it has new 'rounded' boundaries that it has to conform to.   *** Please note*** the helmet is not a vice in any way.  It does not squeeze or press the head at ALL!!  Instead, as mentioned above, it simply acts as a guide for the new shape that the head is to conform to. 
                       I hope this helps!  If you have further questions of just need clarification on something I've said, do not hesitate to ask.  That's what we are all here for- to share our experiences and to help one another out!!
                     
                    -Connie


                    Grooms4 <grooms4@...> wrote:
                    Kristin
                     
                    Thanks for the info. Briar is going on 10 months. The doctor says that the shape of his head may cause more problems such as his eyes to bulge and his mouth to stay open. The doctors are watching closely he has to go every week for a visit. I just feel since he can not support his head at all that it is causing pressure to be put on his head from the helmet.
                     
                    By the way Briar's middle name is Sebastian.
                     
                    Again thanks for the info we appreciate anything you or any others share.
                    Marva
                    ----- Original Message -----
                    Sent: Wednesday, August 11, 2004 1:11 PM
                    Subject: Re: [Myotubular_Myopathy] Briar

                    Hello!
                     
                    When Sebastian was 4 or 5 months old, his head was really flattened on the right side, and I asked our pediatrician if he needed a helmut.  She said no, that she felt his head would reshape itself.  At the time, I felt differently - I was sure that he would have a flat head forever!  However, he is now 16 months old, and aside from slightly crooked ears, his head is fine.  I know that it is a big decision to get a helmut - I don't want to dissuade you too much!  But, I also know that it can be hard to wear the helmut, so I thought I would just offer our experience.  I know it's hard when you want to do everything you can for your baby!  But, I'm glad that Sebi didn't have the helmut.  How old is Briar?  Do you think that he is past the age where you could just wait and see?  With Sebastian, I was just so used to all these interventive and proactive approaches that I didn't consider that he might work it out on his own, b! ut he did!
                     
                    Just a thought - I feel bad, like I'm trying to convince you not to use it!!!  I'm really not, but it might be worth a second opinion?  Esp if it bothers/irritates him.
                     
                    Good luck, he sounds like a sweetheart!!
                    Kristin

                    minyturtle <grooms4@...> wrote:
                    Hello all!

                    I was wondering if any of your sons have had to wear a helmet or are
                    wearing a helmet. Briar just recently started wearing one to reshape
                    his head. They are having problems with it leaving knots and marks on
                    his head. The doctors say they do not know why it is doing this. Any
                    information would be appreciated. We realize that this process is
                    needed but Briar is not a happy camper when wearing the helmet. I
                    shouldn't say that because he is the happiest baby I have ever seen.
                    Even when crying he will give you a smile. But you can tell he would
                    perfer not to be wearing it. Just trying to find out what experiences
                    others have had with helmets if any.

                    God Bless,
                    Marva


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                  • kristin cypher
                    Hi Marva! Just to reply to Connie s post - she is right, Sebi was pretty much sitting up by himself at 7 months of age, and this was the major factor in his
                    Message 9 of 13 , Aug 11, 2004
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                      Hi Marva!
                       
                      Just to reply to Connie's post - she is right, Sebi was pretty much sitting up by himself at 7 months of age, and this was the major factor in his head being able to reshape itself.  Although interestingly, at the time the pediatrician told us we didn't need the helmut, he wasn't doing ANYthing like this!!  =)
                       
                      Connie's reply also made me think that I need to update everyone in regard to how Sebi is doing.  It's odd - he for sure has the MTM mutation (his muscle biopsy and genetic testing confirmed it), but he is much less affected than most of the other boys in this group.  As I mentioned in my earlier post, he is just over 16 months old, and has progressed from sitting to standing to (within the last two months) being able to walk holding someone's hands.  He also isn't getting g-tube food during the day, and is only dripped with 12 oz at night.  He is strong enough to eat, but after so many months of not taking foods by mouth, it is a slow transition getting him to understand that he can get all the food he needs by himself.
                       
                      Overall, he is doing really, surprisingly, well.  His MTM mutation just isn't as severe as others.  Still, like the other boys, he gets stronger all the time, and we are so grateful for him!!
                       
                      Best Wishes,
                      Kristin

                      connie guinn <kookla_g@...> wrote:
                       
                      Hi, Marva!
                      Benjamin wore a cranial remolding helmet from the age of 9 months until 16 months of age.  He had a slightly flattened area on his back right occiput, and the right side of his face was flat, too.  (He favored the right side- he would even roll to that side even when placed on his left!)  This caused the location of his ears to shift and not be equal.  It pushed back the ear on the flat side which caused the other ear to move forward.  Long term effects of his head/ face being misshappen would be that it eventually would affect his 1)  orbital (eye) bones   2) the length of his eustation tubes (this, of course, would cause problems with vertigo, ear infections, and his hearing). 
                      It was a hard decision to make because, although the helmet is not very heavy, ANY extra weight is a burden for these guys.  And, at the time, Benjamin was not able to hold his head up, yet.  However, it was truly the best decision for us!  In the end, Benjamin's head improved 100%.  The flat head has been rounded, his face no longer has a flat side, his ears are lined up perfectly (an equal distance away from his nose), and I believe it made his neck stronger because soon after discontinuing the use of the helmet, he began holding up his head and making great strides of movement.
                        If Briar does end up getting the helmet, I have a word of advice for you to give your niece concerning this.  That is, DO NOT get the type of helmet that is open on the top, foam lined, and pulls apart just on one side.  With this type of helmet, it is too easy to rub a pressure spot onto the back of his head due to the fact that he can't sit up by himself.  This sore is created by the friction the helmet produces as it is taken off of and put onto the head- it is not a pressure sore resulting from having the helmet on for sustained periods.  Instead, I would recommend the type that is a solid helmet (made of clear plastic) that hinges in the middle of the crown of the helmet.  [This type actually has two halves that you can gently place over his head and then secure on with the velcro.]
                      Benjamin did not like wearing it at first, either.  But, after a day or two, he didn't seem to mind too much.  At first, he would only tolerate it for about 30 minutes at a time.  But after about 5 or 6 days, he was up to the full time, and, eventually, he got to a maintenance schedule of 4 hours on and 1 hour off.  Because Benjamin is so hot-natured, this caused another source of concern.  We ended up putting the helmet into the refrigerater in between wearings! :D 
                      I believe the reason that Kristin's son, Sebastian, did so well without any intervention is because he is clearly a lot less affected by the MTM than Benjamin is.  Benjamin did not start sitting up by himself until he was around 16 months old, whereas Sebastian was sitting up by 9 months for sure and probably a lot earlier.  So, he didn't spend as much CONSTANT time lying down as Benjamin did.  The constancy of lying down worsens the problem.  The value of the helmet is that, even though they are still lying down for the same amount of time, the head is not allowed to continue to flatten because it has new 'rounded' boundaries that it has to conform to.   *** Please note*** the helmet is not a vice in any way.  It does not squeeze or press the head at ALL!!  Instead, as mentioned above, it simply acts as a guide for the new shape that the head is to conform to. 
                         I hope this helps!  If you have further questions of just need clarification on something I've said, do not hesitate to ask.  That's what we are all here for- to share our experiences and to help one another out!!
                       
                      -Connie


                      Grooms4 <grooms4@...> wrote:
                      Kristin
                       
                      Thanks for the info. Briar is going on 10 months. The doctor says that the shape of his head may cause more problems such as his eyes to bulge and his mouth to stay open. The doctors are watching closely he has to go every week for a visit. I just feel since he can not support his head at all that it is causing pressure to be put on his head from the helmet.
                       
                      By the way Briar's middle name is Sebastian.
                       
                      Again thanks for the info we appreciate anything you or any others share.
                      Marva
                      ----- Original Message -----
                      Sent: Wednesday, August 11, 2004 1:11 PM
                      Subject: Re: [Myotubular_Myopathy] Briar

                      Hello!
                       
                      When Sebastian was 4 or 5 months old, his head was really flattened on the right side, and I asked our pediatrician if he needed a helmut.  She said no, that she felt his head would reshape itself.  At the time, I felt differently - I was sure that he would have a flat head forever!  However, he is now 16 months old, and aside from slightly crooked ears, his head is fine.  I know that it is a big decision to get a helmut - I don't want to dissuade you too much!  But, I also know that it can be hard to wear the helmut, so I thought I would just offer our experience.  I know it's hard when you want to do everything you can for your baby!  But, I'm glad that Sebi didn't have the helmut.  How old is Briar?  Do you think that he is past the age where you could just wait and see?  With Sebastian, I was just so used to all these interventive and proactive approaches that I didn't consider that he might work it out on his own, b! ut he did!
                       
                      Just a thought - I feel bad, like I'm trying to convince you not to use it!!!  I'm really not, but it might be worth a second opinion?  Esp if it bothers/irritates him.
                       
                      Good luck, he sounds like a sweetheart!!
                      Kristin

                      minyturtle <grooms4@...> wrote:
                      Hello all!

                      I was wondering if any of your sons have had to wear a helmet or are
                      wearing a helmet. Briar just recently started wearing one to reshape
                      his head. They are having problems with it leaving knots and marks on
                      his head. The doctors say they do not know why it is doing this. Any
                      information would be appreciated. We realize that this process is
                      needed but Briar is not a happy camper when wearing the helmet. I
                      shouldn't say that because he is the happiest baby I have ever seen.
                      Even when crying he will give you a smile. But you can tell he would
                      perfer not to be wearing it. Just trying to find out what experiences
                      others have had with helmets if any.

                      God Bless,
                      Marva


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                    • Grooms4
                      Connie, Thanks so much. Briar has his helmet already (several weeks now) and from the sound of it he has the one you suggested not to get. And he is getting
                      Message 10 of 13 , Aug 12, 2004
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                        Connie,
                         
                        Thanks so much. Briar has his helmet already (several weeks now) and from the sound of it he has the one you suggested not to get. And he is getting the pressure sores. Briar also cannot hold his head up at this point 9 months and love to be on his right side like Benjamin. I believe I remember seeing a picture of Benjamin with his helmet. He is so cute. I will have to go check out his picture again to see the helmet.
                         
                        Thanks for all the information.
                         
                         
                        Marva
                        ----- Original Message -----
                        Sent: Wednesday, August 11, 2004 8:35 PM
                        Subject: Re: [Myotubular_Myopathy] Briar

                         
                        Hi, Marva!
                        Benjamin wore a cranial remolding helmet from the age of 9 months until 16 months of age.  He had a slightly flattened area on his back right occiput, and the right side of his face was flat, too.  (He favored the right side- he would even roll to that side even when placed on his left!)  This caused the location of his ears to shift and not be equal.  It pushed back the ear on the flat side which caused the other ear to move forward.  Long term effects of his head/ face being misshappen would be that it eventually would affect his 1)  orbital (eye) bones   2) the length of his eustation tubes (this, of course, would cause problems with vertigo, ear infections, and his hearing). 
                        It was a hard decision to make because, although the helmet is not very heavy, ANY extra weight is a burden for these guys.  And, at the time, Benjamin was not able to hold his head up, yet.  However, it was truly the best decision for us!  In the end, Benjamin's head improved 100%.  The flat head has been rounded, his face no longer has a flat side, his ears are lined up perfectly (an equal distance away from his nose), and I believe it made his neck stronger because soon after discontinuing the use of the helmet, he began holding up his head and making great strides of movement.
                          If Briar does end up getting the helmet, I have a word of advice for you to give your niece concerning this.  That is, DO NOT get the type of helmet that is open on the top, foam lined, and pulls apart just on one side.  With this type of helmet, it is too easy to rub a pressure spot onto the back of his head due to the fact that he can't sit up by himself.  This sore is created by the friction the helmet produces as it is taken off of and put onto the head- it is not a pressure sore resulting from having the helmet on for sustained periods.  Instead, I would recommend the type that is a solid helmet (made of clear plastic) that hinges in the middle of the crown of the helmet.  [This type actually has two halves that you can gently place over his head and then secure on with the velcro.]
                        Benjamin did not like wearing it at first, either.  But, after a day or two, he didn't seem to mind too much.  At first, he would only tolerate it for about 30 minutes at a time.  But after about 5 or 6 days, he was up to the full time, and, eventually, he got to a maintenance schedule of 4 hours on and 1 hour off.  Because Benjamin is so hot-natured, this caused another source of concern.  We ended up putting the helmet into the refrigerater in between wearings! :D 
                        I believe the reason that Kristin's son, Sebastian, did so well without any intervention is because he is clearly a lot less affected by the MTM than Benjamin is.  Benjamin did not start sitting up by himself until he was around 16 months old, whereas Sebastian was sitting up by 9 months for sure and probably a lot earlier.  So, he didn't spend as much CONSTANT time lying down as Benjamin did.  The constancy of lying down worsens the problem.  The value of the helmet is that, even though they are still lying down for the same amount of time, the head is not allowed to continue to flatten because it has new 'rounded' boundaries that it has to conform to.   *** Please note*** the helmet is not a vice in any way.  It does not squeeze or press the head at ALL!!  Instead, as mentioned above, it simply acts as a guide for the new shape that the head is to conform to. 
                           I hope this helps!  If you have further questions of just need clarification on something I've said, do not hesitate to ask.  That's what we are all here for- to share our experiences and to help one another out!!
                         
                        -Connie


                        Grooms4 <grooms4@...> wrote:
                        Kristin
                         
                        Thanks for the info. Briar is going on 10 months. The doctor says that the shape of his head may cause more problems such as his eyes to bulge and his mouth to stay open. The doctors are watching closely he has to go every week for a visit. I just feel since he can not support his head at all that it is causing pressure to be put on his head from the helmet.
                         
                        By the way Briar's middle name is Sebastian.
                         
                        Again thanks for the info we appreciate anything you or any others share.
                        Marva
                        ----- Original Message -----
                        Sent: Wednesday, August 11, 2004 1:11 PM
                        Subject: Re: [Myotubular_Myopathy] Briar

                        Hello!
                         
                        When Sebastian was 4 or 5 months old, his head was really flattened on the right side, and I asked our pediatrician if he needed a helmut.  She said no, that she felt his head would reshape itself.  At the time, I felt differently - I was sure that he would have a flat head forever!  However, he is now 16 months old, and aside from slightly crooked ears, his head is fine.  I know that it is a big decision to get a helmut - I don't want to dissuade you too much!  But, I also know that it can be hard to wear the helmut, so I thought I would just offer our experience.  I know it's hard when you want to do everything you can for your baby!  But, I'm glad that Sebi didn't have the helmut.  How old is Briar?  Do you think that he is past the age where you could just wait and see?  With Sebastian, I was just so used to all these interventive and proactive approaches that I didn't consider that he might work it out on his own, b! ! ut he did!
                         
                        Just a thought - I feel bad, like I'm trying to convince you not to use it!!!  I'm really not, but it might be worth a second opinion?  Esp if it bothers/irritates him.
                         
                        Good luck, he sounds like a sweetheart!!
                        Kristin

                        minyturtle <grooms4@...> wrote:
                        Hello all!

                        I was wondering if any of your sons have had to wear a helmet or are
                        wearing a helmet. Briar just recently started wearing one to reshape
                        his head. They are having problems with it leaving knots and marks on
                        his head. The doctors say they do not know why it is doing this. Any
                        information would be appreciated. We realize that this process is
                        needed but Briar is not a happy camper when wearing the helmet. I
                        shouldn't say that because he is the happiest baby I have ever seen.
                        Even when crying he will give you a smile. But you can tell he would
                        perfer not to be wearing it. Just trying to find out what experiences
                        others have had with helmets if any.

                        God Bless,
                        Marva


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                      • connie guinn
                        Kristin, We haven t heard from you for quite some time- I just have one thing to say: Yay, for Sebi!!! I am so glad for him that he is able to stand (on his
                        Message 11 of 13 , Aug 12, 2004
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                          Kristin,
                           
                          We haven't heard from you  for quite some time- I just have one thing to say:
                          Yay, for Sebi!!!     
                          I am so glad for him that he is able to stand (on his own) and walk!! How exciting!!   And that he is eating by mouth some, now- how excellent!   I know you are grateful for him, and I am so glad that you get to see improvements and increased strength in your son like the rest of us do  We celebrate every little step- and I know you do, too!
                          Glad to hear things are going so well for you both up in Colorado!!
                          Take care,
                           
                          -Connie 

                          kristin cypher <myrkrida@...> wrote:
                          Hi Marva!
                           
                          Just to reply to Connie's post - she is right, Sebi was pretty much sitting up by himself at 7 months of age, and this was the major factor in his head being able to reshape itself.  Although interestingly, at the time the pediatrician told us we didn't need the helmut, he wasn't doing ANYthing like this!!  =)
                           
                          Connie's reply also made me think that I need to update everyone in regard to how Sebi is doing.  It's odd - he for sure has the MTM mutation (his muscle biopsy and genetic testing confirmed it), but he is much less affected than most of the other boys in this group.  As I mentioned in my earlier post, he is just over 16 months old, and has progressed from sitting to standing to (within the last two months) being able to walk holding someone's hands.  He also isn't getting g-tube food during the day, and is only dripped with 12 oz at night.  He is strong enough to eat, but after so many months of not taking foods by mouth, it is a slow transition getting him to understand that he can get all the food he needs by himself.
                           
                          Overall, he is doing really, surprisingly, well.  His MTM mutation just isn't as severe as others.  Still, like the other boys, he gets stronger all the time, and we are so grateful for him!!
                           
                          Best Wishes,
                          Kristin

                          connie guinn <kookla_g@...> wrote:
                           
                          Hi, Marva!
                          Benjamin wore a cranial remolding helmet from the age of 9 months until 16 months of age.  He had a slightly flattened area on his back right occiput, and the right side of his face was flat, too.  (He favored the right side- he would even roll to that side even when placed on his left!)  This caused the location of his ears to shift and not be equal.  It pushed back the ear on the flat side which caused the other ear to move forward.  Long term effects of his head/ face being misshappen would be that it eventually would affect his 1)  orbital (eye) bones   2) the length of his eustation tubes (this, of course, would cause problems with vertigo, ear infections, and his hearing). 
                          It was a hard decision to make because, although the helmet is not very heavy, ANY extra weight is a burden for these guys.  And, at the time, Benjamin was not able to hold his head up, yet.  However, it was truly the best decision for us!  In the end, Benjamin's head improved 100%.  The flat head has been rounded, his face no longer has a flat side, his ears are lined up perfectly (an equal distance away from his nose), and I believe it made his neck stronger because soon after discontinuing the use of the helmet, he began holding up his head and making great strides of movement.
                            If Briar does end up getting the helmet, I have a word of advice for you to give your niece concerning this.  That is, DO NOT get the type of helmet that is open on the top, foam lined, and pulls apart just on one side.  With this type of helmet, it is too easy to rub a pressure spot onto the back of his head due to the fact that he can't sit up by himself.  This sore is created by the friction the helmet produces as it is taken off of and put onto the head- it is not a pressure sore resulting from having the helmet on for sustained periods.  Instead, I would recommend the type that is a solid helmet (made of clear plastic) that hinges in the middle of the crown of the helmet.  [This type actually has two halves that you can gently place over his head and then secure on with the velcro.]
                          Benjamin did not like wearing it at first, either.  But, after a day or two, he didn't seem to mind too much.  At first, he would only tolerate it for about 30 minutes at a time.  But after about 5 or 6 days, he was up to the full time, and, eventually, he got to a maintenance schedule of 4 hours on and 1 hour off.  Because Benjamin is so hot-natured, this caused another source of concern.  We ended up putting the helmet into the refrigerater in between wearings! :D 
                          I believe the reason that Kristin's son, Sebastian, did so well without any intervention is because he is clearly a lot less affected by the MTM than Benjamin is.  Benjamin did not start sitting up by himself until he was around 16 months old, whereas Sebastian was sitting up by 9 months for sure and probably a lot earlier.  So, he didn't spend as much CONSTANT time lying down as Benjamin did.  The constancy of lying down worsens the problem.  The value of the helmet is that, even though they are still lying down for the same amount of time, the head is not allowed to continue to flatten because it has new 'rounded' boundaries that it has to conform to.   *** Please note*** the helmet is not a vice in any way.  It does not squeeze or press the head at ALL!!  Instead, as mentioned above, it simply acts as a guide for the new shape that the head is to conform to. 
                             I hope this helps!  If you have further questions of just need clarification on something I've said, do not hesitate to ask.  That's what we are all here for- to share our experiences and to help one another out!!
                           
                          -Connie


                          Grooms4 <grooms4@...> wrote:
                          Kristin
                           
                          Thanks for the info. Briar is going on 10 months. The doctor says that the shape of his head may cause more problems such as his eyes to bulge and his mouth to stay open. The doctors are watching closely he has to go every week for a visit. I just feel since he can not support his head at all that it is causing pressure to be put on his head from the helmet.
                           
                          By the way Briar's middle name is Sebastian.
                           
                          Again thanks for the info we appreciate anything you or any others share.
                          Marva
                          ----- Original Message -----
                          Sent: Wednesday, August 11, 2004 1:11 PM
                          Subject: Re: [Myotubular_Myopathy] Briar

                          Hello!
                           
                          When Sebastian was 4 or 5 months old, his head was really flattened on the right side, and I asked our pediatrician if he needed a helmut.  She said no, that she felt his head would reshape itself.  At the time, I felt differently - I was sure that he would have a flat head forever!  However, he is now 16 months old, and aside from slightly crooked ears, his head is fine.  I know that it is a big decision to get a helmut - I don't want to dissuade you too much!  But, I also know that it can be hard to wear the helmut, so I thought I would just offer our experience.  I know it's hard when you want to do everything you can for your baby!  But, I'm glad that Sebi didn't have the helmut.  How old is Briar?  Do you think that he is past the age where you could just wait and see?  With Sebastian, I was just so used to all these interventive and proactive approaches that I didn't consider that he might work it out on his own, b! ut he did!
                           
                          Just a thought - I feel bad, like I'm trying to convince you not to use it!!!  I'm really not, but it might be worth a second opinion?  Esp if it bothers/irritates him.
                           
                          Good luck, he sounds like a sweetheart!!
                          Kristin

                          minyturtle <grooms4@...> wrote:
                          Hello all!

                          I was wondering if any of your sons have had to wear a helmet or are
                          wearing a helmet. Briar just recently started wearing one to reshape
                          his head. They are having problems with it leaving knots and marks on
                          his head. The doctors say they do not know why it is doing this. Any
                          information would be appreciated. We realize that this process is
                          needed but Briar is not a happy camper when wearing the helmet. I
                          shouldn't say that because he is the happiest baby I have ever seen.
                          Even when crying he will give you a smile. But you can tell he would
                          perfer not to be wearing it. Just trying to find out what experiences
                          others have had with helmets if any.

                          God Bless,
                          Marva


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