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1531Re: [Myotubular_Myopathy] More info for Austin!

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  • ANN MILLER
    Dec 6, 2004
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      Hi Carolyn,
       
      Glad to hear Austin is doing better.  As I said before, there will be good days and bad days.  After awhile the bad days will seem less, you get use to it and accept them as part of life.  As Shannon has mentioned, the breathing treatments work wonders.  Some days we do more than others, but atleast 3 times aday.  It all depends on how congested Kyle is. 
       
      Try contacting the local MDA office to see what programs are available in their area.  Also contact the school system.  Like Shannon said, there are programs available through the school systems.  We have a program called Infants and Toddlers.  They come to our house 1 time a week and Kyle goes to school now 1 day a week.  I also take him to our local hospital, they have a rehab program there.  He goes 2 times a week for physical theraphy and speech theraphy.   Also contact the Social Security office.  Them may be able to help with insurance and expense.  They have some programs Austin should be able to get help through.  Don't give up, sometimes you have to contact the offices 3 or more times to get any answers.
       
      Most hospitals do not have up to date info on this form of MD.  It is so rare that they don't see a need for the expense to update.  Most of the info they have is from the 50's and 60's.  Unfortunately, our doctors get most of their info from us.
       
      Just remember, these boys are fighters.  They don't give up easily!  We won't give up on them either!
       
      Take care,
       
      Darlene
       
      ----- Original Message -----
      Sent: Sunday, December 05, 2004 9:24 PM
      Subject: Re: [Myotubular_Myopathy] More info for Austin!

      Gosh, this is so informative!  Though I don't know why we've never heard of any of this, I hope that they were simply unaware of these options rather than their giving up on Austin!  I guess you'd think that someone at Mass General would've been a little more helpful, and even consulted with experts at other hospitals if they weren't aware of these options, but it's such a large (and famous) institution that maybe they're just too busy!  I've asked Lisa if she'd been contacted by them since Austin was discharged from the ICU, and they've never once followed up to see how he's progressing.  The only appointment they've made is to return 8 weeks after Austin's discharge so that the g-button can be swapped out for a new one.  Lisa only discovered last week that she was supposed to check the saline solution - no one had mentioned it at the hospital!
       
      Thanks for the info, Shannon - I'm forwarding it to Lisa so she can ask Austin's pediatrician!
       
      Carolyn

      Shannon <smashintwo66@...> wrote:

      Carolyn,

      OMG! I can't believe that they basically wrote Austin off. SOOOOOO
      FRUSTRATING! It's unfortunate that they only rely on what they can
      find on the web or the literature and don't look any farther!

      Javad starting getting respiratory treatments when he was a baby. He
      continues to get these during the day. We use a nebulizer to give
      him atrovent and albuterol nebs (Duoneb is best because it combines
      the 2 meds...we also have albuterol as a fast acting
      bronchodialator.) We use the nebulizer in combination with PEP
      (Positive exhalation pressure). These two are connected and the PEP
      is attached to oxygen. It provides positive pressure which opens up
      all of the bronchi in the bases of the lungs. Thos who are on a
      ventilator do this with the PEEP, but I know Austin is not treached
      (like Javad) and this has been incredibly helpful! In April he was
      put on bi-pap at night. THis is like getting a respiratory treatment
      for 8 hours. It has been amazing. This has strengthened his chest
      wall and his lungs. He has made is through colds and I see him
      improve in strength. He wears a nasal mask when the pressure is
      delivered and the bi-pap can be set at a rate so he can sleep better
      and totally relax. It has been a gift! I think this is one avenue
      that will keep him from geting trached at least for a long period of
      time!

      If they end up getting bipap for Austin, let me know because I get a
      special mask from Canada (better than they have here because its
      easier on his face!) that's not available in the US.

      Javad also is involved in the county early intervention program. I
      think that they shuld have a program like that where Lisa and Fred
      live. They should call the county and see how they can get him
      evaluated (he'll qualify!). They come to our house and do physical
      therapy, speech therapy, etc. It's great!

      Don't ever give up on Austin. Our boys have proved the doctors wrong
      again and again! We are here to give info when you need it! I hope
      that this has been helpful!

      Shannon

      PS Did I already ask if Austin has a nissen fundoplication? THis has
      really helped with Javad's reflux!





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