Subj : Later this month.
To   : Mark Hofmann
From : Ardith Hinton
Date : Fri Mar 02 2018 02:36:56

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)

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