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Re: [IP] zero to DKA in nothin' flat?


I think my take on pump or not pump decisions is quite different than the
rest of our list members -- possibly b/c I spent my teenage years on a pump
and have worn one for 17 years.  So, like everything else you are told, take
this with many many grains of salt and lots of perspective!!!

    The pump is a fantastic tool -- but it is only a tool and it is still a
very limited one.  It does put an end to the chains of food and meal and
tight schedule times.  As long as those chains are within your recent memory
it is a fabulous comparison.  I found that in my 20's when my earlier
schedule days had grown dim, that was sometimes not enough to make it
"wonderful" (sorry guys but it's true).

    Pumps require continuous thoughtful and well thought out calculation.
They also require very sensitive support from family or significant others
or whomever it is close to you.  That means that as a parent you have to
walk an additional balance beam -- not only the diabetes one.  That is, you
must be able to implement careful and always changing calculations while
handing them over slowly (as she gets older) to your child without ever
dropping out while always being unobtrusive -- tough act!  Many families do
this brilliantly -- Renee and Michael seem to have amazing senses of
proportion (a fantastically difficult thing!) and great technical ability
and lots of financial and emotional resources.  Lily and Melissa seem to be
handling this all very well.  If for one moment though, you imagine that the
pump can be used to make things easier, it doesn't -- just better control.
And you can't ever say to your child "since you have a pump you ought to be
doing better..." b/c at some point -- 16 or 18 or 21 or somewhere she will
have problems getting it to work or reasons to be less motivated.

    Pump supplies (and the necessary blood testing accompaniments) are not
hard to get if you have good long term large company health insurance.  They
are nearly impossible to get when you are a college or university student
with no more access to your parents policy.  That means too that when you
first enter the job market, many jobs and insurance policies do not cover
your supplies and it can come down to rent or pump supplies.  In other
words, remember that your support will be needed for a long time to come --
until your daughter is securely in the job world -- which for well-educated
(grad school, etc)  kids can be until they reach their late '20s (most of my
non diabetic college friends still lack consistent health insurance policies
in their mid '30s!  A few found them in their mid 20s).  So its terrific if
you can be there for a long time to come!

    After 17 years of being attached to this thing, about once every 6
months I go thru a week when I would kill to have it go away -- the physical
attachment part!!  Clothes for months or even a year at a time are
effortless and easy.  Then for a month or so I can't get suits or this or
that to work comfortably, can find things with pockets, or the pump pulls
down on clothes of thinner materials all day.  After periods of traumatic
life stuff, I occasionally find it hard to figure out what to eat b/c I'm
tired and my calculations aren't working for one reason or another.  Unlike
a meal/shot plan, you can't ever fall into mechanical behavior out of sheet
exhaustion.  None of this is bad.  Much of it beats regular diabetic life.
The improved control is phenomenal.  I just worry about the fact that both
my family and the families of several of the teenagers I started on the pump
with did not have all those endless endlessly -- for 17 years with no
abatement -- resources Renee and Michael provide.  If you are thoughtful,
calm and are in this for the long haul and are willing to always help your
daughter rethink her diabetes, then its a wonderful wonderful option.  Go
for it.  But just understand she may not always think its so great.

I know that 17 years ago we all thought the pump was a fantastic interim
solution. The JDF parents we knew all believed that within 10 years it would
be unnecessary.  I have no idea if and when that will be the case and I
don't like living waiting for improvements.  If and when it comes that's
terrific.  But in the meantime, you must be prepared to deal with a pump for
10 or 20 years.

Not one of these is a good reason not to get your daughter a pump.  All of
them are good reasons to sit down and ask yourself about your parenting
style and beliefs, about your ability to learn as a parent daily, and your
ability to be their and plan ahead for the long haul.  Some diabetic parents
have already done that.  Then good and go for it.  But please please please
be brutally honest with yourself!

I think many people here don't think any of these things are important.  I
do have many many positive things to say about the pump!!!!  I just think
that everyone else will cover those.

Best of luck,


Kim Huffman wrote:

> Yesterday I was on the phone with our CDE making insulin adjustments and
> wanted to remind her that at our next visit I wanted to discuss the pump
> for Stephanie (she's 9 yrs. old).  Even though they have some kids on
> pumps, they are all over age 12, and I could tell she was trying to
> discourage us from considering it right now.  She talked about how fast
> you can go into DKA on the pump, and said that it does happen, even with
> those who are meticulous (I think that statement was for our benefit, as
> she knows how meticulous I am).  I would like to know just how fast this
> can actually happen.  For instance, let's say she goes to bed and
> somehow the infusion set comes out.  Between night and morning, how high
> could her blood sugar rise w/out insulin for that period of time?  She
> also mentioned some other things to discourage me, but this was one
> subject I didn't know how to fight back on.   For some reason they are
> really stuck on this age 12 and up stuff, which I can understand would
> be helpful for them to be older, but I still think as parents you would
> just be more involved with the day to day management until they are able
> to do it on their own.
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