Hi, Mark!  Recently you wrote in a message to Ardith Hinton:   
      
   AH>  My mother had Crohn's disease, which can occur anywhere in   
   AH>  the GI tract but is most often found higher up.  That might   
   AH>  explain a lot.  She was also getting on in years by then.   
   AH>  In my experience kids... including kids with DS... tend to   
   AH>  be more adaptable than the vast majority of grownups I know.   
      
   MH>  Yes, I know some people that have that condition.  In some   
   MH>  cases they remove the entire colon if it is too damaged.   
      
      
             Since you reawakened my interest in the subject, I've also   
   discovered that further surgeries may be advised if the disease flares up   
   again elsewhere. I wonder now if what I observed in my mother's case involved   
   a flareup.  At the time of the initial surgery I didn't see a significant   
   change in her behaviour. But some years later... when my father was in   
   hospital & she depended on me for assistance... her usual routines were   
   disrupted.  As a result I spent much more time with her than usual, and   
   noticed how well she was coping (or not)....  :-/   
      
      
      
   MH>  It seems the area has not gone down enough in size and one   
   MH>  of the surgeons feels they would have to remove too much   
   MH>  bowel - where it would not give the best results.  They   
   MH>  suggested a different procedure when they inject Botox to   
   MH>  relax the bowel to keep things flowing for now.   
      
      
             Relax the bowel??  I also have some doubt about this idea because   
   the average kid with DS has no problem with relaxing various muscles.  It came   
   as a shock to me, as a mother, when I realized how stiff & tense other   
   people's kids seem to be by comparison.  One of the endearing things about   
   Nora as a baby was that she'd quite happily adjust to the shape of the person   
   holding her.  And it didn't occur to me until we lent one of her classmates a   
   pair of boots that I'd forgotten how to put boots on "normal" kids who don't   
   know how to help me.  :-)   
      
      
      
   MH>  We don't like the idea of going with an unproven method - that   
   MH>  still would require being put to sleep, so we have decided to   
   MH>  switch back to our original surgeon (whom has done an operation   
   MH>  on our son when he was born).   
      
   MH>  We want the best long term results for our son - and if that   
   MH>  means getting two operations, then that is what we have to   
   MH>  accept.  The first one will be the "bypass" or ostomy.  This   
   MH>  will be in place for probably 6 months to one year. Then the   
   MH>  second operation will be to "re-connect" the area and all   
   MH>  things should be good at that point.   
      
   MH>  It will take that long in between for the bowel to get back   
   MH>  to normal size when they can still use it.   
      
   MH>  Not exactly what we wanted to do - but we have to focus on   
   MH>  the best long term result.   
      
      
             As Dallas & I do with medical situations involving our daughter.  :-)   
      
      
      
   MH>  We have done our homework and just about all   
   MH>  surgeons we talked to said the same thing.   
      
      
             Whew!  I'm out of my depth here, but I like the idea that you've   
   done your homework.  If the majority of surgeons you've consulted agree & you   
   have a surgeon available whom you already know & trust he may indeed be your   
   best bet.   
      
      
      
   MH>  On the positive side, it should offer him some relief and   
   MH>  won't need the enemas every 3 days - which is not fun for   
   MH>  anyone involved.   
      
      
             Yeah, that's my take on it.  Hang in there & keep in touch....  :-)   
      
      
      
      
   --- timEd/386 1.10.y2k+   
    * Origin: Wits' End, Vancouver CANADA (1:153/716)