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RE: [IPp] Road to pumping

Well, the road to pumping was a long one too but not too long!:O) When Riley
first woke up after a 12 hr coma (yes, it was my kid in the coma too I'm
ashamed to say!) the CDE (a wonderful lady!) from the Hospital's D center
came to see us.  She had been TI for over 30 years (dx'd at age 8), no
complications, had 3 children and was pumping with a MM!  She knew that in
the midwest our chances of getting a pump at age barely 4, combined with the
fact that they don't teach carb counting in Kansas (point system-NO child
should ever be on that nasty thing!) would be a hinder.  However, she
strongly encouraged us to pursue it and she taught about the pump in the
hospital classes for the newly dx'd.  I knew after that class that Riley
WOULD get a pump and I was not going to stop fighting untill he did!:O)  The
endo refused telling us it was not for children (altho he admitted kids 2
yrs old were pumping in France and he himself was on a pump!).  In the
meantime, I read everything and anything about a pump and started to teach
myself how to carb count with books from the ADA.  Shots were a nightmare
for my little guy.  The first 6 mos we literally had to restrain him to give
injections with him screaming and crying, begging us not to do it-a
difficult time for us all.  NPH was never good in Riley, it peaked within 4
hours, wore off within 8-we were chasing numbers all day and he was
miserable!  We moved from KS to FL and switched endo's, I had mentally
prepared myself to do battle and demand that very first visit we get a pump.
The CDE came in and quizzed me on carb counting, insulin ratios, insulin
sensitivity (I learned all this stuff on my own, thank God I knew this!),
etc.  The endo walks in and the CDE says: "I think they would make a great
canidate for the pump, what do you think?"-I could have kissed them
both!!!!!:O)  We had no problem with the insurance co, picked our pump and
within 6 weeks of that first visit he was pumping insulin!  That was 11 mos
after dx's and 1 month before he turned 5.  We've never looked back since!!
Oh, the first 3 mos on the pump; Riley's A1c dropped a point to 7.6 he grew
3 inches and lost 3 lbs!  Our Ped endo is a researcher for the DRI in Miami
too and is doing a study of pumps in children-she offers the pump to all her
patients regardless of age.

*I want to explain Riley's dx's to you all ok?  Riley had had croup 3 weeks
prior to dx's.  The Ped. gave him Prednisone (yes, that infamous steroid!)
and his D sypmtoms showed up 24 hours after the first dose-he wet the bed.
He was not quite 4 years old at the time.  The symptoms continued and got
progressively worse.  I called the Ped's office at least 4 times a week
concerned.  She kept shrugging it off saying it was a side effect of the
steriod-don't worry.  Boy, was I blind (or in denial!).  I *knew* the
symptoms of D my younger sis was dx'd at age 3 (TI 26 years no
complications) but I think deep down I didn't want to face the fact that my
child had it too kwim?  Anyway, one morning (he had lost 7lbs by then but we
kept telling ourselves he grew taller or he slimmed a bit but he's an active
boy) I got up and Riley was gray, mottled skin, suken eyes and breathing
very, very rapidly.  He woke up, vomited and I knew at that moment he was
dying and I didn't really know why.  I've never been so scared in my entire
life!  I rushed him and the other 3 kids to the Peds, he passed out in the
office.  They rushed him via an ambulance to the rural hospital, stabilized
him and lifewatched him to a major hospital.  He remained in a coma for 12
hours.  We spent 2 days in PICU and 5 on the Ped's floor.  I still feel a
lot of guilt over this ya know?  It was good (sad to say) that he was in
PICU for 2 days because it helped us really examine our priorities and
helped form our positive attitude towards D.  Riley was surrounded by
children who would never leave that unit (well, not physically)-some as
young as 6 mos old.  I was thankful that not only would our child leave this
place but he would go on to live a full, healthy life.  I have 2 positive
role models too-my uncle who is TI for 45 years and complication free and my
sister.  I knew if they could do it Riley could too!:O)  Anyway, I just
wanted everyone to know that yes, I was blind and an idiot but I'm not
really an idiot!!<G>

PS because of our pump experience, we've convinced dh's aunt to put her
daughter on the pump (TI for 9 years-age 11) and my sister!!!!!!!!!!!

Take care,
Amy-mom to Tyler-8, Riley-6 (dx'd 7-1-99&pumping 20 mos), Mason-4, Cailin
Rose-almost 3, & Lane-2 mos
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