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Re: [IPp] Got our letter---now we're upset
<< Why did the nurses keep your son out a semester? What was their
reasons? Do > you have a 504 plan in affect or an IEP??? >>
Well, we had a 504 plan in affect, but the nurses decided it
wasn't specific enough in its instruction. They actually wanted
to know how low his BS numbers should be when they should
treat for low blood sugar, and how low they should be when they
could disconnect because he was unconcious! They seriously
They then wrote their own care plan which included some ridiculous
goals, some criticizing of our parenting/Zachary's lifestyle, and a
lot of incorrect care instructions. We fought for a month not to
sign it! Finally by the last week of school they had modified it
to the point of acceptance.
As far as why he missed all of 2nd semester, it was being in
severe DKA all of January till Valentines Day. Dr.'s believe
it was a combo of stess (my mother had just died at XMAS from
cancer and our neighbor who was like an extra grandparent was
fighting lung cancer---he just passed on.) and the beginnings
of pre-puberty (raging hormones). Then he went on pump
mid-Feb and we'd planned on keeping him out for 10days-2 weeks
to get him regulated and well again. When we attempted to send
him back March 1st, they started the fights:
1. Couldn't be at school without an inserter on the premises
at all times. They wouldn't do manual insertions if he
lost his port. Insurance company wouldn't agree to pay
for another and we couldn't afford the $50 plus s/h that
MiniMed would need to bill us.
2. Once that was straightened out, they didn't want him there
till he could count carbs unassisted. (We'd never counted
carbs before with his IDDM---he'd been on a sliding scale
based on blood sugar numbers.) He's not a cold sandwich
eater and won't take his lunch. We had to get school
district to supply us with the carb contents on their foods
served. Took over 2 weeks to get the info for the "fast
food" selections at his middle school---never did get it
for normal plate lunches.
3. During all this, they refused acceptance of first set of
Dr's orders, then kept refusing the 504 plan. Then
decided to write their own which we wouldn't agree to.
Couldn't be at school without this.
4. Then when we attempted to send him after spring break
(begining of April) we were still without #3 --but had
started fighting back and had approval of Principle to
allow him there. BUT, the nurses were still disagreeing
on the care plan, any fluctuations in boluses needed Dr.
orders (i.e. if we wanted to change from .6 per 15 carbs
to .7 per 15 carbs they wanted it in writing from Dr.)
5. Then they started scaring him with the nonsence they were
writing in their care plans and he lost trust in them. They
also attempted on two occassions mid April when we actually
sent him for a few hours to do a correction bolus on him
only 90 minutes after his breakfast---and we were stil having
problems with correction boluses. They wouldn't agree to
only do them if it had been over 3-4 hours since a meal bolus.
6. All this caused Zachary to develop "Nurse Phobia". All he
had to do was be told he might drop in school for a class
and his blood sugars would double. If I actually took
him spur of the moment for a class he would double in
the first 45 minutes and within the next 45 minutes had
reached above 400 even though he'd started out at
125 ! The nurses didn't help as they had a case of
"Zach Phobia" going on themselves. They'd had pumpers
in the past, had another one there this year, but had never
had a fragile/brittle diabetic before. They were worried
the year before just knowing he was coming there the following
We think we have everything straightened out for next year
now, we've warned the school & the school district that we
are through with nonsence, and all "nurse" problems will be
instantly brought to administrative attention and even let
them know that if any more infringements are made on his
educational rights, we'll be heading for the TV stations.
ALL of this is why we'd hoped to be on the new pump long enough
for him to feel comfy with it, thereby aiding his comfort level
as we introduced it to the nurses prior to school starting so
everything would be a smooth transition from summer into a new
school year. NOW, we'll be panicking with sending him on the
first day with an unfamiliar pump, with their not being trained,
> <<What is the hold up on getting the Paradigm pump? Why can't Minimed
send you > one via mail and then send a rep to your area to train you?
> We live in CT and have never had a problem like this. With a company as big
> as Minimed, you'd think that they would be able to get the ball rolling
> faster, or is it your doctors slowing up the process?>>
MiniMed is upgrading everyone in group situations and we do live
in a large metro area (St. Louis) but they are only coming here
to do the upgrades on two days in August. Nobody here can
get their upgrades any sooner (unless they had been on a 507 and
were already upgraded, or if they are new to pumping and they
order the Paradyn as their pump choice----we've been seeing
newly diagnosed kids with them each time we've been at the
children's hospital for an endo appt. since April 1st.
Sorry this got so long! Zachary has been IDDM since turning age 3
and we've never had any problems with the school system (ours is
AAA rated by the way) until now. He's always had IEP meetings
2xyr with a medical section included. So you never know when
you'll hit obstacles in the school system, but my advise is start
knocking down the obstacles the moment they start building.
Oh yeah, through our cities Special School District they sent
out a tutor for one hour a day to do his work with him under
the "HomeBound Instruction Rule".
Barbara A. Petzoldt - Pump Mama to Zachary (12)
email @ redacted
Independent Kitchen Consultant for The Pampered Chef.
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