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RE: [Myotubular_Myopathy] Updated on Mason

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  • Wright, Janice (J)
    Hi, Matthew was the same. He always got sick after anesthetic. We would try and boost his immune system before hand, but it did always affect him. He also took
    Message 1 of 10 , Sep 1, 2004
      Message
      Hi,
       
      Matthew was the same. He always got sick after anesthetic. We would try and boost his immune system before hand, but it did always affect him.  He also took a long time to recover after ops or illness, but he did recover and got back to his old strength again.
       
      Hope Mason continues to do well.
       
      Janice
      -----Original Message-----
      From: Scott Fontana [mailto:masonsparents@...]
      Sent: 31 August 2004 08:43 PM
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] Updated on Mason

      Thank you for all of your words of concern. We have made in through the two week mark in which the neurologist advised us that if any further seizures were to occur, they would likely happen again. Mason was back to his same old self, we went to our pediatrician for a follow up and it was noted that Mason was due for a hepatitis shot. Two days later, Mason needed to go on an increased ventilator support and increased O2. He has gotten gradually better over the past few days and it is anticipated he will make a full recovery. The doctors believe his body is just whooped. Mason takes a long time to recover. When he had surgery in the past for ear tubes, tonsils, laser work on his stoma and vocal cords, it took us months to get him to the point where he could sit unassisted again. The doctors felt this is due to the general anesthesia and stated they often see this type of reaction in kids with neuromuscular disorder. Overall though, Mason seems to be getting better.


      connie guinn <kookla_g@...> wrote:
      Scott and Staceyann,
      I'm sorry to hear that about Mason- that must have been so scary.  Is he doing ok now?  Has he had any more seizures?   I haven't heard of seizures being related to xmtm before.  Perhaps this was an isolated incidence?  Let's hope so!  My husband had an unexplained, isolated incident of seizing one time (about 7 or 8 years ago), and he has never had it happen again.  Anyway, let us know how things are going.  Godspeed.
      -Connie

      masonsparents <masonsparents@...> wrote:
      Hello all,
      Last Sunday morning at about 6:45 AM, my wife and I were awakened by
      our nurse calling that Mason was in trouble. She stated he had been
      sleeping when the apnea alarm went off on the vent. When he sleeps he
      is only on C-Pap, sometimes the apnea alarm goes off if he has a
      plug. She went to suction and got nothing, she hooked him back to the
      vent and the apnea alarm went off again. She states Mason turned
      black, but the pulse-ox only hit 84 on the sats, she bagged him and
      he began respirations on his own. His color and sats were good, his
      heart rate was high. His eyes were wide open, his pupils were
      dilated, he body went into tremors, he was unresponsive. We called
      911, he was taken by ambulance to our local hospital, they were able
      to get the seizure to stop with medication, after 45 minutes. A CAT
      scan showed no brain abnormalities. He was flown to San Francisco,
      where our specialists are. While there he had an EEG, and spinal tap
      which were normal. The neurologist planned to do an MRI, but in light
      of the normal EEG adn CAT scan, he decided not to. Mason did not
      really wake up until Monday at 10:00AM. The MD's believe the seizure
      came first and caused the respiratory issues. Masons entire chest
      wall seized. It was so scary. To see him now, you wouldn't know that
      anything had happened - he is as happy as can be.  It is not believed
      that he sustained any brain damage. The neurologist stated sometimes
      kids just have seizures with no explanation. He said the seizure is
      not related to Mason's diagnosis of X-Linked Myotubular Myopathy. We
      were prepared for respiratory and neuromuscular issues, but never
      seizures. The neurologist states if seizures are going to happen
      again, they may occur in the next 2 weeks. We are watching him like a
      hawk. Is anyone aware of seizures being associated with x-linked MTM?
      I've never found anything about it.



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    • ANN MILLER
      Hi Scott and Staceyann, Glad to hear Mason is doing better! Kyle also needs increased vent support and 02 when he is sick or after any surgery. It usually
      Message 2 of 10 , Sep 1, 2004
        Hi Scott and Staceyann,
         
        Glad to hear Mason is doing better!    Kyle also needs increased vent support and 02 when he is sick or after any surgery.  It usually takes him a couple of days to get back to normal. 
         
        Take care,
         
        Darlene
        ----- Original Message -----
        Sent: Tuesday, August 31, 2004 2:43 PM
        Subject: [Myotubular_Myopathy] Updated on Mason

        Thank you for all of your words of concern. We have made in through the two week mark in which the neurologist advised us that if any further seizures were to occur, they would likely happen again. Mason was back to his same old self, we went to our pediatrician for a follow up and it was noted that Mason was due for a hepatitis shot. Two days later, Mason needed to go on an increased ventilator support and increased O2. He has gotten gradually better over the past few days and it is anticipated he will make a full recovery. The doctors believe his body is just whooped. Mason takes a long time to recover. When he had surgery in the past for ear tubes, tonsils, laser work on his stoma and vocal cords, it took us months to get him to the point where he could sit unassisted again. The doctors felt this is due to the general anesthesia and stated they often see this type of reaction in kids with neuromuscular disorder. Overall though, Mason seems to be getting better.


        connie guinn <kookla_g@...> wrote:
        Scott and Staceyann,
        I'm sorry to hear that about Mason- that must have been so scary.  Is he doing ok now?  Has he had any more seizures?   I haven't heard of seizures being related to xmtm before.  Perhaps this was an isolated incidence?  Let's hope so!  My husband had an unexplained, isolated incident of seizing one time (about 7 or 8 years ago), and he has never had it happen again.  Anyway, let us know how things are going.  Godspeed.
        -Connie

        masonsparents <masonsparents@...> wrote:
        Hello all,
        Last Sunday morning at about 6:45 AM, my wife and I were awakened by
        our nurse calling that Mason was in trouble. She stated he had been
        sleeping when the apnea alarm went off on the vent. When he sleeps he
        is only on C-Pap, sometimes the apnea alarm goes off if he has a
        plug. She went to suction and got nothing, she hooked him back to the
        vent and the apnea alarm went off again. She states Mason turned
        black, but the pulse-ox only hit 84 on the sats, she bagged him and
        he began respirations on his own. His color and sats were good, his
        heart rate was high. His eyes were wide open, his pupils were
        dilated, he body went into tremors, he was unresponsive. We called
        911, he was taken by ambulance to our local hospital, they were able
        to get the seizure to stop with medication, after 45 minutes. A CAT
        scan showed no brain abnormalities. He was flown to San Francisco,
        where our specialists are. While there he had an EEG, and spinal tap
        which were normal. The neurologist planned to do an MRI, but in light
        of the normal EEG adn CAT scan, he decided not to. Mason did not
        really wake up until Monday at 10:00AM. The MD's believe the seizure
        came first and caused the respiratory issues. Masons entire chest
        wall seized. It was so scary. To see him now, you wouldn't know that
        anything had happened - he is as happy as can be.  It is not believed
        that he sustained any brain damage. The neurologist stated sometimes
        kids just have seizures with no explanation. He said the seizure is
        not related to Mason's diagnosis of X-Linked Myotubular Myopathy. We
        were prepared for respiratory and neuromuscular issues, but never
        seizures. The neurologist states if seizures are going to happen
        again, they may occur in the next 2 weeks. We are watching him like a
        hawk. Is anyone aware of seizures being associated with x-linked MTM?
        I've never found anything about it.



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        New and Improved Yahoo! Mail - Send 10MB messages!


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