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[IP] Re: Newly Diagnosed 7 yr old with Type 1



Lesly,
My 7 yr old daughter was also in the TRIGR study and was just diagnosed with
Type 1 this past summer.  Thanks to the study, her A1C was only 7.2% when she
was diagnosed, without any complications.  As always, YMMV, but her insulin
needs have indeed gone up significantly in only 6 months.  A boy in her class
has the Omnipod and we're leaning that way as well.  I have been using
Medtronic pumps for over 7 years and looking to switch as soon as the warranty
period on this one is up.  We tried putting my old Medtronic pump on her just
for her to get a feel of it, but it seemed so big on her little body.  I also
use a Dexcom G4 that I'm thrilled with, and quite frankly if I had to choose
between the two, I think the Dexcom would be more important for her than the
pump.  (I did try to use the Medtronic CGM, but the insertion was painful and
the transmitter very limited.  The Enlite version seems like it might be more
convenient now and less painful,
 but the transmitter is unchanged.)


Date: Mon, 10 Feb 2014 12:05:42 -0500
From: "Lesly Messina" <email @ redacted>
Subject: [IP] Newly Diagnosed 7 yr old with Type 1

Hello everyone-

This is likely the second time in ten years of being a member of IP that I
have posted although I have lurked for years and have gotten so much helpful
info from IP. I have been Type 1 for 36 years since age 7 (pump user for 15)
and now my 7 year old daughter is about to be diagnosed as well. My mom is
also a Type 1 pump user but was diagnosed at age 40.  My daughter has been
in the TRIGR study since birth so we have known for a while that this was
coming. Her HA1C has slowing been creeping up and in Sept it was 6.4. Her
two hour pp numbers are creeping up to the 200+ range but her fastings are
still normal so she will be diagnosed very early before the clinical stages
show. This will help us preserve some of her beta cell functioning for a
while and has been the experience of a number of the TRIGR kids. With the
study testing they are catching it really early. So initially she will be
requiring so little insulin that she will not qualify for a pump. However I
am a PLANNER and I would love to get feedback from folks that have Type 1
kids with pumps- what kinds they are using and also what types of infusion
sets work well on little ones? My daughter is very lean. Very little to no
abdomen fat and long thin legs and arms. I worry about the pain factor for
the sets and which ones the kids prefer. At a certain point when needed a
pump is a must for her. She rides horses, plays soccer and is generally just
a very active kid.


This could be a year or two away- some of the TRIGR kids are managing on a
shot of lantus in the evening after that amount of time and no fast acting
insulin. But every child is different and I want to have the info I need if
it happens sooner for her. Also anybody using the dexcom CGS with their
kids? I know it hasn't been approved for very long for this age range but
curious as to what folks think about it. I use a Minimed pump but do not use
the CGS. My mom has it and hates it. She needs it but she finds it
frustrating and a pain to use.


Thanks to all.


Lesly Messina
.
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