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RE: [IPk] bad paeds care

Hi Pat & Rob

The move we made with Sasha to get off Mixtard was to swap the evening
Mixtard to Novorapid and Insulatard.  The clinic agreed to my suggestion, as
Sasha (who had recently begun of a gluten free diet, was getting v high post
meal readings) GF food tends to be high carb, quickly absorbed.  I think we
had been using Actrapid and Insulatard before.  I also had had to make the
original  request for Actrapid to because I didn't like the Mixtard and the
fact that you could not vary the short and longer acting.  I feel that this
lack of flexibility was the cause of the night time hypos and the fact that
one couldn't vary the dose to suit a meal without giving more Insulatard.
Then we were still using Mixtard 30 in the morning but we were still left
with the problem that NPH peaks very quickly in Sasha and the school didn't
have lunch until 12.30 pm but she was always dipping low by 11.45am   The
Mixtard also needing to be injected 20 -30 minutes before breakfast.     We
asked the D nurse about this and she said that a new insulin Novomix 30 was
due to be launched soon.  She didn't know when.  However she seemed to
indicate that we had enough sorts of insulin to try several things.  I wrote
to NovoNordisk and looked on various portals about insulin regimens with
Novorapid to make sure I was ok with what I thought would work.  Of course
they said they were unable to suggest actual regimens for my child
obviously.  So we just swapped the same amount of Mixtard 30 for Novorapid
and Insulatard, keeping the proportions the same roughly 30/70 to begin
with.  We also started to give the Insulatard later than the Novorapid.
Sasha has Novorapid at 7.45am and Insultard just before we leave the house
at 8.30.   We didn't really discuss with the clinic that we were giving two
injections in the morning because they seem to think the less injections the
better for kids, even if it means poor control.  I must add that very few
countries use pre mixed insulin because of the problems of fixed ratios.  In
fact most of the parents on the US mailing support list hadn't even heard of
pre mixed doses and were horrified.  Syringes are far more common then pens
in the US. Where they would draw up a tailored dose of short and longer
acting to suit a particular child.   So I didn't tell the clinic, but then
we could hardly ever get hold of the D nurse anyway and she didn't return my
phone calls.  When our consultant asked at  a clinic what insulin Sasha was
having I told him that we were giving separate doses.  He drew his breath in
rather quick but didn't say anything because her figures were good.  He then
got out a book to see if there were any mixes using Humalog or Novorapid and
of course there weren't.  Well, there was Humalog 25 but we use a half unit
pen so that was no good.  Novomix was about to be launched but he didn't
know and I didn't tell him.
So he let it go.  The Novorapid that Sasha has still covers a mid morning
snack but she doesn't always need an afternoon snack only if they have PE or
Games.  If Sasha wants to eat when she comes home from school we give a unit
or a unit and a half with the snack.

This is not MDI.  We could really do with Sasha having a lunchtime injection
but she is still reluctant to do this herself and the school wont help with
this.   If Sasha is not going to pump and whatever happens it seems likely
that we will be stuck doing what we're doing for some months.  I am thinking
of actually going in to do an injection at lunchtime.  If this is the case I
am wondering if it would be worth swapping to a proper MDI ,three or four
short acting and Insulatard or some other long acting at night.  It might
seem a lot of trouble going into the school but at the moment we are having
to go up to school nearly 3 times a week because she goes too high after
lunch and feels unwell even at 14 mmols.

Her current doses are

Novorapid at 7.45 am   3-4 units. Depending or bg or what she has for

Insulatard at  8.30 am   13.5 units.  We don't alter this except for
permanent changes

After school if high and/or wants a snack 1-2 units of Novorapid.

Evening meal 5.30 pm 3.5 -4.5 units  Novorapid

Evening Insulatard  6.5 units  at 7.30 pm.   (most would give this dose much
later, but it works best for Sasha if given at this time, plus I know that
it will have peaked at 11.30pm.    We are more likely to get low readings in
the AM that high ones as she has no dawn rise, but I expect we may get this
sooner or later.

Mum of Sasha 8 and half

> -----Original Message-----
> From: email @ redacted [mailto:email @ redacted]On
> Behalf Of Pat Reynolds
> Sent: 01 December 2002 02:44
> To: email @ redacted
> Subject: Re: [IPk] bad paeds care
> Hi Rob,
> As you say, I'm only a user - it will take a specialist doctor to give
> you the advice you need.  Your GP should be able to prescribe you a
> short-acting insulin to treat highs (I think), but he should be really
> getting you back to the clinic in the next week or so.
> What, I think, Jackie did with Sacha, is first move from pre-mix to
> mixing yourself (i.e. keep with the two insulins in Mixtard (Insulatard
> and Actrapid, I think - probably have that wrong), and move cautiously
> until you get as good as you can get.  As I've said before, the 'best'
> insulin is the one that matches the need - and that's going to be
> different for each person. The only way to find out is to experiment.
> To get to true MDI, the morning insulatard would be replaced by a lunch-
> time actrapid injection (but that might not be necessary). Some
> insulatard in the morning might be necessary on mdi - since it might be
> needed for basal coverage during the day.
> On the highs in the afternoon/evening thing: is she still having an
> afternoon snack?  Could she reduce her lunch (e.g. green salad and cup
> of clear soup?), and would that keep her bgs level until she got home?
> Best wishes,
> Pat
> (dm 30+, 508 1+)
> In message <000601c2988f$eae95260$email @ redacted>, Rob Reznik
> <email @ redacted> writes
> >Hi Pat - thanks for the advice - OK lets say I go to my GP on
> Wednesday and
> >tell him that I wish to put Yasmeen on MDI as a stepping stone
> to allow me
> >to become more familiar with carb counting and the pumps
> available and buy a
> >little more time.
> >
> >I've heard that Lantus has been quite good as a basal insulin
> and although
> >only licensed in the UK to adults is available to children with parental
> >consent. What would you personally recommend/advise re insulin types for
> >MDI. I understand that this will only be your opinion and will
> not hold you
> >to ransom!!
> >Can MDI be administered via pens or are separate syringes required.
> >
> >Many thanks again
> >
> >
> >Rob
> >----------------------------------------------------------
> >for HELP or to subscribe/unsubscribe, contact:
> >HELP@insulin-pumpers.org
> --
> Pat Reynolds
> email @ redacted
>    "It might look a bit messy now, but just you come back in 500
> years time"
>    (T. Pratchett)
> ----------------------------------------------------------
> for HELP or to subscribe/unsubscribe, contact:
> HELP@insulin-pumpers.org
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