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1524Re: Just returned from Boston

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  • Shannon
    Dec 2, 2004
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      HI Carolyn,

      Javad had genetic testing done through University of Chicago and he
      has a type they have not identified before also. I guess that they
      have only identified about 70% of the mutations and I guess Javad
      has one of the ones that hasn't been mapped yet.

      I understand the drs reluctance for Prilosec, but I know in Oregon
      and Emanuel where Javad is seen, they prescribe Prilosec all the
      time. They have it compounded so its a liquid (Does Austin have a g-
      tube?) then adjust the dose. Right now Javad takes 3ml in the am and
      pm.

      I am glad that they have been able to get the Robinul adjusted. It
      can really make a huge difference!

      As far as the bipap is concerned...I wasn't implying that Austin
      would beed the respiraotry support on an ongoing basis, but Javad
      has been using the bipap at night for abou 4 months and I can't
      believe the difference in his energy level and his luing and chest
      strength. He totally breathes on his own, but it expands his lungs
      at a deeper level which has kept him healthier (ok...there was that
      little summer thing!) Does Austin get respiratory treatments using
      PEP therapy? I am not sure if they do that in Boston, but it is
      amazing help! It allows the nebulizer medicine get deeper in the
      lungs. I think that there are some things that can be parallelled
      between Austin and Javad since they both don't have a trach (similar
      to Sebastian.) and some of the things we have learned may be able to
      help Austin. (or may not! :)

      Javad had serious feeding issues too. He had a g-tube placed at 10
      days and this last summer had a nissen fundoplication. This has been
      a huge help for him...it has helped his reflux issues and all of the
      sudden he has gained weight. Last year at this time Javad only
      weighed 17 pounds (That was at 2 years old...very underweight!). He
      weighed 17 pounds the whole year last year (from January to
      November) and now he weighs 28 pounds!!!>

      I am planning to contact Boston's Children about being part of the
      research, but they will need to identify Javad's mutation before
      they can use him as a candidate. Anyway...sorry if I was rambling,
      just wanted to give the info I have. I am glad that you get to go
      visit again at Christmas. We will all be hearing about Autin's
      improvement!

      Shannon
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