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[IP] (Fwd) need some suggestions on what to do..



My Name is Mary DeMello and our 8 yo son Chris has diabetes. We've 
been researching an insulin pump for quite some time now. I'm on the 
pumpers mailing list under a different web address(email @ redacted) 
and am currently changing my ISP.  Your mailing list has really 
helped our family to make the decision that a pump was the right way 
to go for Chris. 

We first approached our endo about this six months ago, just for
information and got a very negative response from her.She did
say,however, at that visit that when we were ready, she would support
our decision, but that she wanted us to give it more thought.(We use
Joslin clinic in Boston, which is about 1 hour north of where we live).

However, we did decide to wait until he started asking us about it,
which he has been doing for the last couple of months now(actually
nagging would be a better word!!)So, this past Monday, we had our
regular endo visit and decided to tell her we were ready.
She told us that she felt Chris was too young and that a pump was alot
of work. She was very negative, to say the least. When my husband
finally had had enough, he told her to just get things going. So she set
up an appointment with the nutritionist to learn carb counting and with
a psychologist. The psychologist appointment is supposed to scare us
straight and make us change our minds about pumping.(There's a better
chance of snow in July at this point).The endo also said that if we do
decide  after all these other appointments to go forward with a pump,
then she'd have to refer us to an endo at Yale.(a 3 hour drive on a good
traffic day for us)

Another interesting, note...we attend a support group, mainly because
there's a kids group at the same time which Chris likes to do. The
subject of pumps was raised by another parent and they were told by the
psychologist that insulin pumps are not a cure ...they're alot of work
and hard to operate...This same parent also asked how they work and was
told that its a device(hand gesturing that it was alot larger than it
actually is) attached to tubing that attached to a needle(again hand
gestures indicating the needle to be HUGE)that you insert in your
abdomen and it stays there for 2-3 days until YOU have to change
it.(body language indicating" you're not medical personnell, so how
could you possibly handle chaging infusion sets??") OH yeah "be grateful
you live in an era where you have glucose meters and use MDI's"(yes, in
case your wondering at this point, this is THE Joslin Clinic we were
at!!)

Sorry I got so lengthy there, but I needed to let you know the whole
story before asking your help.

Do any children that you know of pump in New England(especially the
Massachusetts?Rhode Island area)? If so, Who is their doctor???

Also, I'd like to let the endos at Joslin know that yes, indeed,
children are using pumps successfully. I was wondering if it would be
possible to invite anyone from your mailing list who would want to write
a letter to Joslin Clinic explaining just why it is they love their
pumps.(Parents especially)Also, if you know of any other resources on
the net(or off) who might be willing to write, I'd like to contact them
also. Even if we find another endo, I'd like to see Joslin change their
attitudes!!Other families would surely benefit.

Sorry for the length of this letter.

Take care,

Mary

P.S. Feel free to pass this letter along...

email @ redacted
Insulin-Pumpers website   http://www.bizsystems.com/Diabetes/