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RE: [IPk] bad paeds care

Hi Rob
I've read some of your questions, and if you want to contact me off list, I 
have a few sugges
tions and comments. 01462 626695
Debbie, Parents Support Group

>From: "Jackie Jacombs" <email @ redacted>
>Reply-To: email @ redacted
>To: <email @ redacted>
>Subject: RE: [IPk] bad paeds care
>Date: Sun, 1 Dec 2002 18:19:11 -0000
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>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, 
>Sasha (who had recently begun of a gluten free diet, was getting v high 
>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 
>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 
>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.  
>fact most of the parents on the US mailing support list hadn't even heard 
>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 
>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 
>rather quick but didn't say anything because her figures were good.  He 
>got out a book to see if there were any mixes using Humalog or Novorapid 
>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 
>Games.  If Sasha wants to eat when she comes home from school we give a 
>or a unit and a half with the snack.
>This is not MDI.  We could really do with Sasha having a lunchtime 
>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 
>of actually going in to do an injection at lunchtime.  If this is the case 
>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 
>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 
>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 
> > >consent. What would you personally recommend/advise re insulin types 
> > >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
>for HELP or to subscribe/unsubscribe, contact:

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