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Re: [Myotubular_Myopathy] Worried about my two year old

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  • Scott & Betsy Grant
    Jenna, I know I sounded blunt and harsh about a new doctor but I really do mean it. Doctors vary widely in their skills in managing different things. She
    Message 1 of 10 , Sep 15, 2007
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      Jenna,
      I know I sounded blunt and harsh about a new doctor but I really do mean it. Doctors vary widely in their skills in managing different things. She should not have to put up with vomiting at night as a routine. It is not safe.
      Betsy

       
      On 9/15/07, Scott & Betsy Grant <scottnbets@...> wrote:
      Jenna,
      It sounds to me like you should have a really good doctor give her a thorough evaluation. If she is vomiting at night, that is dangerous. Is she monitored in any way at night, with an O2 sat machine? Has any doctor explained why she is vomiting and proposed something to do about it? Perhaps she has reflux. The mucous does sound excessive. Do you have a suction machine at home? Do you ever check her O2 sats during the day?
      It's a lot of questions, I'm sorry if I threw a lot at you. It just sounds to me that if you told her doctor that she is vomiting a lot at night and nothing is being done, then you need a new doctor.
      Betsy

       
      On 9/14/07, jennaleigh85 <jennaleigh85@... > wrote:

      Hey guys,
      Quick question. Is it common for children with centonuclear myopathy to have trouble
      clearing their throat of muscus? I'm sure it is, but when is it time to see a doctor about it?

      My daughter Allie is 2 1/2 now and she's been very well. However, she's always coughed a lot
      and vomited due to mucus trapped in her throat but lately it just seems to be a lot worse. At
      night she coughs the most and sometimes ends up vomiting. It scares me that someday I'm
      might wake up to help her when this happens. This has been happening for a couple of
      months now.
      Today she has vomited after three of her tube feeds. Each time it's FULL of white strechy
      mucus....TUNS OF IT! Where in the world can she be storing all this mucus?
      She doesn't act like sick. She's still playing and rolling about but when I ask her where her
      boo-boo is. She pats her chest.
      I'm worried.

      ~Jenna~ ( 22yr old mother of 2yr old Allison w/CNM)



    • Pat or Sarah
      Hi Jenna, Adam (now 6 years old) used to throw up all the time from throat secretions at that age. He grew out of it around 4-5 years old. We find the Cough
      Message 2 of 10 , Sep 15, 2007
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        Hi Jenna,
        Adam (now 6 years old) used to throw up all the time from throat secretions at that age.  He grew out of it around 4-5 years old.  We find the Cough Assist machine to be extremely helpful in clearing these secretions.  You can find out more about the Cough Assist machine at http://coughassist.respironics.com/.  Good luck.  Sarah
      • Jenna Winn
        Yes Betsy, we have been to her pulmonologist several times for several reasons and he s always known of this problem. He talked about a fundoplacation (not
        Message 3 of 10 , Sep 15, 2007
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          Yes Betsy, we have been to her pulmonologist several
          times for several reasons and he's always known of
          this problem. He talked about a fundoplacation (not
          sure if i spelt that right) but suggested we try
          medicine for reflux first. We tried several through
          the years but none of them seem to work well.
          He does not however know about all the mucus she's
          been vomiting out lately (sometimes in the middle of
          the night). You are right though, We do need to see a
          doctor about it and I will make an appointment first
          chance I get.
          We do not check her 02 stats everyday and we dont have
          a suction machine either. The heavy mucus is new thing
          and nobody has ever said anything about checking her
          02 sats. It's never been an issue before.
          We do have a cough assist machine though, something we
          just got a couple of months ago to help with clearing
          her throat. Ever sinse she was born she been very
          gurggley. This cough matching does't seem to help.
          Does anyone else have one? I wonder if it's just not
          strong enough for all this new mucus.
          On the brighter side, with Allie having that gurgle
          sound in her throat all the time, having a g-tube for
          aspiration, and reflux that seems to come and go,
          she's never had Pneumonia. I get scared though, that
          it's going to sneak up on her one day after Allie just
          catches a simple cold and can't control all of the
          mucus in her throat. (knock on wood).
          Any more suggestions? Thank you for your concern.

          ~Jenna~




          --- Scott & Betsy Grant <scottnbets@...> wrote:

          > Jenna,
          > It sounds to me like you should have a really good
          > doctor give her a
          > thorough evaluation. If she is vomiting at night,
          > that is dangerous. Is she
          > monitored in any way at night, with an O2 sat
          > machine? Has any doctor
          > explained why she is vomiting and proposed something
          > to do about it? Perhaps
          > she has reflux. The mucous does sound excessive. Do
          > you have a suction
          > machine at home? Do you ever check her O2 sats
          > during the day?
          > It's a lot of questions, I'm sorry if I threw a lot
          > at you. It just sounds
          > to me that if you told her doctor that she is
          > vomiting a lot at night and
          > nothing is being done, then you need a new doctor.
          > Betsy
          >
          >
          > On 9/14/07, jennaleigh85 <jennaleigh85@...>
          > wrote:
          > >
          > > Hey guys,
          > > Quick question. Is it common for children with
          > centonuclear myopathy to
          > > have trouble
          > > clearing their throat of muscus? I'm sure it is,
          > but when is it time to
          > > see a doctor about it?
          > >
          > > My daughter Allie is 2 1/2 now and she's been very
          > well. However, she's
          > > always coughed a lot
          > > and vomited due to mucus trapped in her throat but
          > lately it just seems to
          > > be a lot worse. At
          > > night she coughs the most and sometimes ends up
          > vomiting. It scares me
          > > that someday I'm
          > > might wake up to help her when this happens. This
          > has been happening for a
          > > couple of
          > > months now.
          > > Today she has vomited after three of her tube
          > feeds. Each time it's FULL
          > > of white strechy
          > > mucus....TUNS OF IT! Where in the world can she be
          > storing all this mucus?
          > >
          > > She doesn't act like sick. She's still playing and
          > rolling about but when
          > > I ask her where her
          > > boo-boo is. She pats her chest.
          > > I'm worried.
          > >
          > > ~Jenna~ ( 22yr old mother of 2yr old Allison
          > w/CNM)
          > >
          > >
          > >
          >


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        • Jenna Winn
          Hi Sarah, Yes, we do have the cough assist machine but for us it doesn t seem to be helping. I wonder if we re doing something wrong. We v had it for a couple
          Message 4 of 10 , Sep 15, 2007
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            Hi Sarah,
            Yes, we do have the cough assist machine but for us it
            doesn't seem to be helping. I wonder if we're doing
            something wrong. We'v had it for a couple of months
            now.
            By the way sarah, Awhile back ago you helped me find
            some families here in Ohio that have children with
            this disorder. I think there were two families and you
            were only able to contact one of them. Well, She
            called me a couple of weeks ago and we will be meeting
            this afternoon. Thank you again.

            ~Jenna~

            --- Pat or Sarah <patsarah@...> wrote:

            > Hi Jenna,
            > Adam (now 6 years old) used to throw up all the time
            > from throat secretions at that age. He grew out of
            > it around 4-5 years old. We find the Cough Assist
            > machine to be extremely helpful in clearing these
            > secretions. You can find out more about the Cough
            > Assist machine at
            > http://coughassist.respironics.com/. Good luck.
            > Sarah
            >




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          • WANDA SANTORY
            Do you have a 30 degree angled pillow? Don t lay her flat. What are you feeding her too? Don t give the Pediasure if she continues to throw up. Milk produces
            Message 5 of 10 , Sep 15, 2007
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              Do you have a 30 degree angled pillow? Don't lay her flat. What are you feeding her too? Don't give the Pediasure if she continues to throw up. Milk produces thick secretions. Make soup & put it in the blender. It will go through the feeding bag. I would make ginger and lemon/mint teas. Give her lots of water too. Do you have a humidifier in the room too? That helps loosen it up. She has to learn to spit it out too. Do you have a suction machine?
               
               
               


               
              ----- Original Message ----
              From: jennaleigh85 <jennaleigh85@...>
              To: Myotubular_Myopathy@yahoogroups.com
              Sent: Friday, September 14, 2007 8:15:22 PM
              Subject: [Myotubular_Myopathy] Worried about my two year old

              Hey guys,
              Quick question. Is it common for children with centonuclear myopathy to have trouble
              clearing their throat of muscus? I'm sure it is, but when is it time to see a doctor about it?

              My daughter Allie is 2 1/2 now and she's been very well. However, she's always coughed a lot
              and vomited due to mucus trapped in her throat but lately it just seems to be a lot worse. At
              night she coughs the most and sometimes ends up vomiting. It scares me that someday I'm
              might wake up to help her when this happens. This has been happening for a couple of
              months now.
              Today she has vomited after three of her tube feeds. Each time it's FULL of white strechy
              mucus....TUNS OF IT! Where in the world can she be storing all this mucus?
              She doesn't act like sick. She's still playing and rolling about but when I ask her where her
              boo-boo is. She pats her chest.
              I'm worried.

              ~Jenna~ ( 22yr old mother of 2yr old Allison w/CNM)




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            • Shannon
              I would definitely advocate for a suction machine and pulse oximeter (for sleeping). Withthe suctio I would not only learn how to suction orally, but also NT
              Message 6 of 10 , Sep 15, 2007
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                I would definitely advocate for a suction machine and pulse oximeter
                (for sleeping). Withthe suctio I would not only learn how to suction
                orally, but also NT in case of emergency...

                Lots of mucous is fairly normal...Javad had tons when he was younger...

                Shannon
              • Anne Lennox
                Dear Jenna Absolutely, absolutely get a monitor and suction machine. Even if Allison rarely needs a suction for normal living, you need it for emergencies if
                Message 7 of 10 , Sep 16, 2007
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                  Dear Jenna
                  Absolutely, absolutely get a monitor and suction machine.  Even if Allison rarely needs a suction for normal living, you need it for emergencies if her secretions are as stringy as this.  And you can stop worrying about whether you'll wake up if you put her on a monitor.
                   
                  Although there is a chance that the vomiting is reflux related, you seem to be describing her vomiting due to coughing up mucous. So while you continue to think about how to manage possible reflux, don't let anyone deflect you from describing the coughing related vomiting.  As we all know because our children have a condition with expected side effects, sometimes it's hard to be heard  when describing other/related issues.  I once had to dye all Tom's feeds with beetroot juice (because the digestive juices don't destroy the colour) to prove to people that the 'white stuff' that I was suctioning up was not his refluxed milk, but actually secretions that were more productive than they should have been.  It was only after we recorded a week of every single suction, with only 2 which were stained purple, that I was finally believed - all because Tom 'should have been' refluxing. THEN they were able to listen to me about what was really the problem!
                   
                  We also had a problem with stringy mucous and I was told regularly 'it is physiologically impossible for a child of Tom's age (he was then 2) to have a sinus problem'.  When they finally put a camera into his sinuses he had a TERRIBLE sinus problem and as soon as we started steroid drops in his nose, the stringiness of his secretions improved 200% - no exaggeration.  The drops we use here in the UK are Betnesol.  There is also a wonderful Australian saline nasal spray on the market which you can use very effectively in between the steroid drops. I just can't remember  the name of it right now (other families are using it - does any one else remember?)
                   
                  I've thought long and hard about including this next paragraph because I don't want to be a scare monger so forgive me if this upsets anyone. The really terrible thing Jenna is that before I persuaded them that he must have a sinus problem, Tom suffered a huge airway blockage one morning (the classic time for sinus trouble) that I couldn't resolve with suction - and boy was I good with suction - it's just that it was so thick. He went into cardio respiratory failure because his airway was blocked for too long, was resuscitated by the paramedics but ultimately suffered major brain damage.  We never got the bright funny laughing sign languaging trike riding 3 year old back.  He was still our beloved boy who we got straight back home from ICU and never allowed into hospital again, but the 9 months we had left with him were with a different boy.  I live with many 'what ifs' - all parents do, it's just that ours are more knife edge and ultimately more dreadful - and one of my biggest is that I didn't fight the arrogance that told me I was 'wrong' that my boy's morning mucous was something 'different than the norm for these boys' and something to be worried about.  I would have videoed the morning episodes, I would have brought an ENT specialist to my house for Tom's morning waking no matter how much they thought I was mad, I would have insisted on the sinus test.  I only tell you this to encourage you to push, push, push.  This really is something to be worried about.
                   
                  Much love, and a big kiss to Allison for being so strong
                  Anne
                  x
                   
                   
                   
                   


                  From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of jennaleigh85
                  Sent: 15 September 2007 01:15
                  To: Myotubular_Myopathy@yahoogroups.com
                  Subject: [Myotubular_Myopathy] Worried about my two year old

                  Hey guys,
                  Quick question. Is it common for children with centonuclear myopathy to have trouble
                  clearing their throat of muscus? I'm sure it is, but when is it time to see a doctor about it?

                  My daughter Allie is 2 1/2 now and she's been very well. However, she's always coughed a lot
                  and vomited due to mucus trapped in her throat but lately it just seems to be a lot worse. At
                  night she coughs the most and sometimes ends up vomiting. It scares me that someday I'm
                  might wake up to help her when this happens. This has been happening for a couple of
                  months now.
                  Today she has vomited after three of her tube feeds. Each time it's FULL of white strechy
                  mucus....TUNS OF IT! Where in the world can she be storing all this mucus?
                  She doesn't act like sick. She's still playing and rolling about but when I ask her where her
                  boo-boo is. She pats her chest.
                  I'm worried.

                  ~Jenna~ ( 22yr old mother of 2yr old Allison w/CNM)

                • Jenna Winn
                  We do have a humidifier but we stopped using it thinking it was making things worse. The mucus would become so loose that not only would it run all over the
                  Message 8 of 10 , Sep 22, 2007
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                    We do have a humidifier but we stopped using it
                    thinking it was making things worse. The mucus would
                    become so loose that not only would it run all over
                    the place but she would become very very gurrgley and
                    start coughing a lot. It would keep her awake and I
                    was afraid that she was aspirating it.
                    The muscus has somewhat cleared up since since I last
                    messaged everyone but I know it will be back. It's
                    been awhile since I used the humidifier so I think
                    I'll hook it back up and try things again. I'll also
                    be seeing her doctor soon about the suction matchine
                    and some new reflux medicine.
                    Also, I know this sounds crazy but I didn't think we
                    could put anything else down the G-tube. We've always
                    used pediasure, water and Juice. I ever thought of
                    soup. But would it be enough calories? We NEED
                    calories! Please let me know. What other food have you
                    used?

                    ~Jenna~

                    --- WANDA SANTORY <bubblelips8151972@...> wrote:

                    > Do you have a 30 degree angled pillow? Don't lay her
                    > flat. What are you feeding her too? Don't give the
                    > Pediasure if she continues to throw up. Milk
                    > produces thick secretions. Make soup & put it in the
                    > blender. It will go through the feeding bag. I would
                    > make ginger and lemon/mint teas. Give her lots of
                    > water too. Do you have a humidifier in the room too?
                    > That helps loosen it up. She has to learn to spit it
                    > out too. Do you have a suction machine?
                    >
                    >
                    >
                    >
                    >
                    >
                    > ----- Original Message ----
                    > From: jennaleigh85 <jennaleigh85@...>
                    > To: Myotubular_Myopathy@yahoogroups.com
                    > Sent: Friday, September 14, 2007 8:15:22 PM
                    > Subject: [Myotubular_Myopathy] Worried about my two
                    > year old
                    >
                    > Hey guys,
                    > Quick question. Is it common for children with
                    > centonuclear myopathy to have trouble
                    > clearing their throat of muscus? I'm sure it is, but
                    > when is it time to see a doctor about it?
                    >
                    > My daughter Allie is 2 1/2 now and she's been very
                    > well. However, she's always coughed a lot
                    > and vomited due to mucus trapped in her throat but
                    > lately it just seems to be a lot worse. At
                    > night she coughs the most and sometimes ends up
                    > vomiting. It scares me that someday I'm
                    > might wake up to help her when this happens. This
                    > has been happening for a couple of
                    > months now.
                    > Today she has vomited after three of her tube feeds.
                    > Each time it's FULL of white strechy
                    > mucus....TUNS OF IT! Where in the world can she be
                    > storing all this mucus?
                    > She doesn't act like sick. She's still playing and
                    > rolling about but when I ask her where her
                    > boo-boo is. She pats her chest.
                    > I'm worried.
                    >
                    > ~Jenna~ ( 22yr old mother of 2yr old Allison w/CNM)
                    >
                    >
                    >
                    >
                    >
                    >
                    >
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                    >



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                  • Jenna Winn
                    Ann, It was scary hearing your experience but It s helped me. I even had my husband read your story and he agrees that we should have this looked into now.
                    Message 9 of 10 , Sep 22, 2007
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                      Ann,
                      It was scary hearing your experience but It's helped
                      me. I even had my husband read your story and he
                      agrees that we should have this looked into now.
                      Finally he listens to me!
                      Most days, Allie is fine. The mucus seems to come and
                      go. Last week however, it was never so bad. There was
                      just so much of it I couldn't understand where it was
                      all coming from. I think she might have been a little
                      sick. She was constipated as well which could have led
                      to the vomiting. Theres just so much it could be! YOU
                      ARE RIGHT. We do need a suction machine for
                      emergencies! Thank you for making this so clear.
                      I feel like I should have know all this... but NO ONE
                      had ever even told me what a suction machine was
                      untill I talk to our support group about it. Thank god
                      for you guys!
                      We recently just switched a few doctors, we'll see how
                      that goes. The doctors we switched to however, are an
                      hour away from us and that worries me. I'd like them
                      to be a little closer.
                      Before I go, I'm so sorry that you had to go through
                      what you did but thank you for sharing your story with
                      us.

                      ~Jenna~




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

                      > Dear Jenna
                      > Absolutely, absolutely get a monitor and suction
                      > machine. Even if Allison
                      > rarely needs a suction for normal living, you need
                      > it for emergencies if her
                      > secretions are as stringy as this. And you can stop
                      > worrying about whether
                      > you'll wake up if you put her on a monitor.
                      >
                      > Although there is a chance that the vomiting is
                      > reflux related, you seem to
                      > be describing her vomiting due to coughing up
                      > mucous. So while you continue
                      > to think about how to manage possible reflux, don't
                      > let anyone deflect you
                      > from describing the coughing related vomiting. As
                      > we all know because our
                      > children have a condition with expected side
                      > effects, sometimes it's hard to
                      > be heard when describing other/related issues. I
                      > once had to dye all Tom's
                      > feeds with beetroot juice (because the digestive
                      > juices don't destroy the
                      > colour) to prove to people that the 'white stuff'
                      > that I was suctioning up
                      > was not his refluxed milk, but actually secretions
                      > that were more productive
                      > than they should have been. It was only after we
                      > recorded a week of every
                      > single suction, with only 2 which were stained
                      > purple, that I was finally
                      > believed - all because Tom 'should have been'
                      > refluxing. THEN they were able
                      > to listen to me about what was really the problem!
                      >
                      > We also had a problem with stringy mucous and I was
                      > told regularly 'it is
                      > physiologically impossible for a child of Tom's age
                      > (he was then 2) to have
                      > a sinus problem'. When they finally put a camera
                      > into his sinuses he had a
                      > TERRIBLE sinus problem and as soon as we started
                      > steroid drops in his nose,
                      > the stringiness of his secretions improved 200% - no
                      > exaggeration. The
                      > drops we use here in the UK are Betnesol. There is
                      > also a wonderful
                      > Australian saline nasal spray on the market which
                      > you can use very
                      > effectively in between the steroid drops. I just
                      > can't remember the name of
                      > it right now (other families are using it - does any
                      > one else remember?)
                      >
                      > I've thought long and hard about including this next
                      > paragraph because I
                      > don't want to be a scare monger so forgive me if
                      > this upsets anyone. The
                      > really terrible thing Jenna is that before I
                      > persuaded them that he must
                      > have a sinus problem, Tom suffered a huge airway
                      > blockage one morning (the
                      > classic time for sinus trouble) that I couldn't
                      > resolve with suction - and
                      > boy was I good with suction - it's just that it was
                      > so thick. He went into
                      > cardio respiratory failure because his airway was
                      > blocked for too long, was
                      > resuscitated by the paramedics but ultimately
                      > suffered major brain damage.
                      > We never got the bright funny laughing sign
                      > languaging trike riding 3 year
                      > old back. He was still our beloved boy who we got
                      > straight back home from
                      > ICU and never allowed into hospital again, but the 9
                      > months we had left with
                      > him were with a different boy. I live with many
                      > 'what ifs' - all parents
                      > do, it's just that ours are more knife edge and
                      > ultimately more dreadful -
                      > and one of my biggest is that I didn't fight the
                      > arrogance that told me I
                      > was 'wrong' that my boy's morning mucous was
                      > something 'different than the
                      > norm for these boys' and something to be worried
                      > about. I would have
                      > videoed the morning episodes, I would have brought
                      > an ENT specialist to my
                      > house for Tom's morning waking no matter how much
                      > they thought I was mad, I
                      > would have insisted on the sinus test. I only tell
                      > you this to encourage
                      > you to push, push, push. This really is something
                      > to be worried about.
                      >
                      > Much love, and a big kiss to Allison for being so
                      > strong
                      > Anne
                      > x
                      >
                      >
                      >
                      >
                      >
                      > _____
                      >
                      > From: Myotubular_Myopathy@yahoogroups.com
                      > [mailto:Myotubular_Myopathy@yahoogroups.com] On
                      > Behalf Of jennaleigh85
                      > Sent: 15 September 2007 01:15
                      > To: Myotubular_Myopathy@yahoogroups.com
                      > Subject: [Myotubular_Myopathy] Worried about my two
                      > year old
                      >
                      >
                      >
                      > Hey guys,
                      > Quick question. Is it common for children with
                      > centonuclear myopathy to have
                      > trouble
                      > clearing their throat of muscus? I'm sure it is, but
                      > when is it time to see
                      > a doctor about it?
                      >
                      > My daughter Allie is 2 1/2 now and she's been very
                      > well. However, she's
                      > always coughed a lot
                      > and vomited due to mucus trapped in her throat but
                      > lately it just seems to
                      > be a lot worse. At
                      > night she coughs the most and sometimes ends up
                      > vomiting. It scares me that
                      > someday I'm
                      > might wake up to help her when this happens. This
                      > has been happening for a
                      > couple of
                      > months now.
                      > Today she has vomited after three of her tube feeds.
                      > Each time it's FULL of
                      > white strechy
                      > mucus....TUNS OF IT! Where in the world can she be
                      > storing all this mucus?
                      > She doesn't act like sick. She's still playing and
                      > rolling about but when I
                      > ask her where her
                      > boo-boo is. She pats her chest.
                      > I'm worried.
                      >
                      > ~Jenna~ ( 22yr old mother of 2yr old Allison w/CNM)
                      >
                      >
                      >
                      >
                      >



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