Dina,
I can't speak about the Bacoflen pump as we decided
against it for Alex. One reason is that he has such
weird reactions to drugs, I didn't want to go the drug
route. Another reason is that with a large active
family I didn't want to be dependant to refill
schedules etc.
I can speak about how we were educated about the SDR
however. We didn't go into blindly. Alex had two
series of Botox in the  muscles that would be affected
by the SDR to see what the results would most likely
be like. Botox, sdr,none of it has prevented him from
scissoring his legs. We also tried a SWASH brace prior
to the SDR and that did nothing either. We KNEW going
into the procedure that scissoring would most likely
be a remaining problem. We were also told that SDR
will NOT prevent any orthopedic procedure that was
neccessary before sdr. It will NOT cure contractures
that are already present. We knew that lengthenings
were going to be in his future before the SDR. Hip
surgery was also being talked about at the same time
as the severe spasticity was causing his hips to be
pulled out of the socket. Since he wasn't able to bear
weight the sockets were also underdevoloped.He had the
lenthenings done a year later and there has been no
further talk of hip surgery. The hips are stable and
stronger as he is now up on his feet bearing weight
independantly. A good thing. As with any procedure the
1st cases will usually have less favorable outcomes
then the kids down the road.You also have to choose
your nuero-surgeon carefully. We were very fortunate
that Alex had one of the top pediatric  nuero-surgeons
in the  US. There is no sign of scolosis but there
never has been. His spine is as strong as I could hope
for as he participates with his big brothers in the
rough and tumbling horseplay that boys are prone to do
in an effort to see how fast they can destroy a
physical structure called a house :). I can't begin
the emphasize the amount of seating balance he has
gained form the SDR. Those legs that were once so very
tight that pulled him out of a seat because of
extension( when he was relaxed!!! forget about when he
gets excited). I've often explained it to the new med
students etc who want to know what differance it made
to ALex like this. Remember in school tipping your
chair back a bit as you listen to the teacher?
remember tipping it back just a little to far and
trying to regain balance again? What did you do? You
might have flailed your arms to gain balance. Might
have grabbed the desk with your hands to remain
stable. While you were trying to regain balance what
else could you do at the same time? What do remember
of what the teacher was saying? Horrors..you didn't
gain balance after all and went tipping over in your
chair. How long just to get over the embarrassment
before you could start listening again to the teacher?
This was ALex's life, every single second prior to the
SDR. Unless he was flat on his back he struggled to
for balance every single second and more often than
not lost the fight. The SDR took this battle away from
him.
As far as "alternative" therapies go I'm not against
them. However just like mainstrean surgeries you have
to factor the costs vs benefits. As HBO stands today
it's now getting some insurance re-imbursement but for
the most part a very expensive procedure  to consider
at around $5000/session of dives and  most of that is
out of pocket. Then there is the problem of finding a
place that offers it to our kids and thus involves
travel expenses as well. Since you are traveling it
means the kid is missing school and participating in
family activities. As I understand it the 40 dives
that seem standard takes two or three weeks to
accomplish. It also seems to take repeated sessions to
get results or to maintain them. I looked into  HBO
quite seriously before the sdr and quite frankly I
didn't hear anything that was all that impressive in
gains. I'm not saying it doesn't work but just like
the bacoflen pump it wasn't a good match for our
family dynamics.If there is any one thing I've given
Alex in this life it's an family that activlely
participates in his life and I won't do anything that
will interfer with that. Horseback riding has been
Ok.It would probly be fantatic, unfortunately the
stable we use is outdoor and affected by weather
conditions.   He enjoyed which was more important to
me than anything else. I'll keep doing it with him as
long as he enjoys it and I'm sure he'll reap the
benefits a well, especially if the Michigan weather
ever becomes stable( in my dreams). EGG feedback would
probly be a good thing too but I think to have benefit
the kid has to be old enough to understand and
participate.
Joanne
--- [log in to unmask] wrote:
> Hi,
>
> I think that they are going to find problems with
> even the "newer surgeries"
> like the Rhizotomy and the Baclofen pump for the
> following reasons:


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