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

Sebastian's cold

Expand Messages
  • myrkrida
    Hello Everyone! I would like to thank everyone who responded to my inquiry regarding how best to help Sebastian through his first cold. He is doing better -
    Message 1 of 3 , Aug 12, 2003
      Hello Everyone!

      I would like to thank everyone who responded to my inquiry regarding
      how best to help Sebastian through his first cold. He is doing
      better - he seems to be through the real 'illness' part of the cold,
      and is now just recovering, thank goodness.

      As I read through all the posts I received, it made me realize just
      how important it is to talk to other MTM families when something like
      a cold comes up. We live in Denver, and have great medical support,
      but none of the doctors we work with have any other MTM patients, and
      when Sebi came down with this cold, they could only do what they
      thought was best. It is SO much more helpful to have advice from
      other people with MTM children, because you have been able to take
      the doctor's advice and put it to work - testing what works, what
      doesn't, and how to use the technology and medications so that they
      have the most benefit. It was really frightening for Sebi to have a
      cold, and it really helped to be able to get advice from people who
      have been through the same thing. Thank you.

      Sebastian's cold has also made me wonder if any MTM parents have
      advice about how to care for their MTM children in regard to how much
      they limit exposure to other kids, places, etc in an effort to keep
      them well. Sebi stays home with me, but we take him out alot, and
      I'm almost sure this is why he got a cold. I would like to know how
      many parents really try to limit where they take their MTM babies,
      and at what age/strength level they felt comfortable exposing their
      MTM babies to other people and places. My biggest fear is that I
      will think that Sebi is 'okay' to go everywhere when he is 2 or so,
      and that he will still be really vulnerable, and I should have kept
      him safer. I know this sounds a little paranoid, but I worry so much
      that since Sebi's case of MTM is mild, my family will just think it's
      okay to take him everywhere, and he will get really sick. Does
      anyone have experience with their MTM boys that could help me
      understand at what age they really start to seem stronger? I know
      it's a tough question given the variety of severity of MTM, but any
      advice you have would be really helpful.

      Also - and this is REALLY paranoid - but does anyone have any
      experience to share in which they did or didn't do something for
      their MTM boys, and wish they would have? For example, now that we
      have a nebulizer, I would never be without it, and I wish that I had
      listed it among the things I wanted from the beginning. Also, when
      Sebi was first diagnosed, I spoke with another MTM parent on the
      phone, and she said that she had heard of another MTM family whose
      son had died because they didn't have a portable suction machine in
      the car, and his secreations cut off his air supply. When I heard
      this story, I made SURE that I had a portable suction machine when we
      left the hospital, and I always take it with me when I travel in the
      car. I guess I felt that this was really good advice, and I was
      wondering if anyone had similar insight into how best to support
      their MTM boys - I would love to hear it!! =)

      Thank you,
      Kristin
    • amanda Hollingsworth
      Kristin, First, I would like to say that I am very happy to hear that Sebastian is feeling better and recovering from his cold. I know it can be quite
      Message 2 of 3 , Aug 13, 2003
        Kristin, 
        First, I would like to say that I am very happy to hear that Sebastian is feeling better and recovering from his cold.  I know it can be quite stressful to have a child who is ill.  Hopefully you won't have to deal with that too often.  Luckily, we haven't.  Second of all, I completely agree with you about reaching out to other parents.  It has helped me so very much.  I have just begun networking with other parents of children with MTM within the past 6 months (my son is 18 months old) and I feel a lot better about everything.  I know there is always someone who has an answer for any question I throw out.  It is not always easy to call the doctor and ask them questions, because like your situation, our doctors have no experience with MTM.  So they usually don't have an answer. 
         
        As for exposing Jacob to public situations, it is usually a case-by-case situation.  I love to take him out, but he doesn't always do so well.  We live in Florida and it is just too hot and humid most days.  And there is always the chance of infection.  His pulmonologist has set it up so that no matter what doctor we are going to see, Jacob DOES NOT have to wait in a waiting room.  We are immediately taken to a private room.  And any time we have to go somewhere we might have to wait with others, I always call in advance and explain the situation.  Most people are pretty cooperative and understanding.  I guess I just try to use my best discretion when deciding whether or not to take him out.  I try to give him the interaction with others he needs, but I know that it is not wise to risk his health in doing so. 
         
        I hope you continue to reach out and please feel free to ask any questions you may have.  I am sure someone here will have an answer. 
         
        Take care, Amanda
         

        myrkrida <myrkrida@...> wrote:
        Hello Everyone!

        I would like to thank everyone who responded to my inquiry regarding
        how best to help Sebastian through his first cold.  He is doing
        better - he seems to be through the real 'illness' part of the cold,
        and is now just recovering, thank goodness.

        As I read through all the posts I received, it made me realize just
        how important it is to talk to other MTM families when something like
        a cold comes up.  We live in Denver, and have great medical support,
        but none of the doctors we work with have any other MTM patients, and
        when Sebi came down with this cold, they could only do what they
        thought was best.  It is SO much more helpful to have advice from
        other people with MTM children, because you have been able to take
        the doctor's advice and put it to work - testing what works, what
        doesn't, and how to use the technology and medications so that they
        have the most benefit.  It was really frightening for Sebi to have a
        cold, and it really helped to be able to get advice from people who
        have been through the same thing.  Thank you.

        Sebastian's cold has also made me wonder if any MTM parents have
        advice about how to care for their MTM children in regard to how much
        they limit exposure to other kids, places, etc in an effort to keep
        them well.  Sebi stays home with me, but we take him out alot, and
        I'm almost sure this is why he got a cold.  I would like to know how
        many parents really try to limit where they take their MTM babies,
        and at what age/strength level they felt comfortable exposing their
        MTM babies to other people and places.  My biggest fear is that I
        will think that Sebi is 'okay' to go everywhere when he is 2 or so,
        and that he will still be really vulnerable, and I should have kept
        him safer.  I know this sounds a little paranoid, but I worry so much
        that since Sebi's case of MTM is mild, my family will just think it's
        okay to take him everywhere, and he will get really sick.  Does
        anyone have experience with their MTM boys that could help me
        understand at what age they really start to seem stronger?  I know
        it's a tough question given the variety of severity of MTM, but any
        advice you have would be really helpful.

        Also - and this is REALLY paranoid - but does anyone have any
        experience to share in which they did or didn't do something for
        their MTM boys, and wish they would have?  For example, now that we
        have a nebulizer, I would never be without it, and I wish that I had
        listed it among the things I wanted from the beginning.  Also, when
        Sebi was first diagnosed, I spoke with another MTM parent on the
        phone, and she said that she had heard of another MTM family whose
        son had died because they didn't have a portable suction machine in
        the car, and his secreations cut off his air supply.  When I heard
        this story, I made SURE that I had a portable suction machine when we
        left the hospital, and I always take it with me when I travel in the
        car.  I guess I felt that this was really good advice, and I was
        wondering if anyone had similar insight into how best to support
        their MTM boys - I would love to hear it!!  =)

        Thank you,
        Kristin



        To unsubscribe from this group, send an email to:
        Myotubular_Myopathy-unsubscribe@egroups.com



        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


        Do you Yahoo!?
        Yahoo! SiteBuilder - Free, easy-to-use web site design software
      • redscootee@webtv.net
        Kristin, So glad to hear Sebastian is getting over his cold. I cannot offer much advise on his healthcare since our family did not find out we had mtm til my
        Message 3 of 3 , Aug 14, 2003
          Kristin, So glad to hear Sebastian is getting over his cold.
          I cannot offer much advise on his healthcare since our family did not
          find out we had mtm til my son was older.
          I would always make sure when you take him to planned events you no one
          has flu, measles, mumps or things of that nature. Since as we know it
          can be harder on ppl with mtm.
          I think between what the docs offer and learning from other parents you
          will come up with a plan that works for Sebi. Since you are around him
          all the time go with your gut feelings about taking him out around
          others.
          Don't ever think you are being paranoid by asking questions. I call it
          being a very loving caring mommy.
          We have several articles on our web site you might find helpful. There
          are a few on mtm as well as other mds. I would especially read the one
          on anesthesia for down the road if he would need it.
          If you have other questions feel free to ask. take care pat
        Your message has been successfully submitted and would be delivered to recipients shortly.