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Re: [IPk] NICE

Hi John

This DAFNE sounds like a very good idea.  Sasha aged 7 was on Mixtard 30
twice a day and now is on Mixtard 30 am and Acctrapid and Insulatard PM.
We had to fight a bit to get the evening dose split and sometimes we do a
split dose AM rather than the Mixtard 30.  We were never told anything at
all about carb counting and bar having every meal identical each day there
was never anyway in which we could be certain what Sasha bg would be.  I
joined the Children With Diabetes support list (USA based) and with help
from that list and The Diabetes Insight list I learnt about carb counting.
I did try briefly counting exchanges but found that not accurate enough for
a small child.  Sasha was only 4 when dxed.   In the last  8 or 9 months,
disregarding illness and Sasha's peculiar digestion (she seems to have a
delayed digestion that effect the speed of absorption of food from time to
time) her HbA1c have been in the 6.5 to 6.9 range.   Now I have learnt about
carb counting I have found life so much easier and because Sasha has an
identical twin it means that I can now calculate the insulin doses so that
if the kids are desperate for that choc ice or lolly I can now calculate
what insulin to give to cover this rather that deny both twins a treat even
when only one has DM.   So life has become more normal again.  It used to be
so difficult going to parties.  The twins get asked to loads.  We used to be
told well they will be running about and burn up the extra carbs and were
not told how to give extra doses.  But the thing is, most of the parties
these days, are things like swimming parties and sports parties which
require extra food to stop Sasha going to low at the beginning and the extra
food at the party was always too late and the wrong sort of food.  So now I
can make a rough calculations and dose for the party food reasonably well.
I have also noticed that since we have been able to say yes to the party
food, ice creams and cakes that had previously been very restricted or not
allowed Sasha has ceased to find them so interesting and prefers savoury
food anyway.   Also I think if she really wants something and she knows I
will work it into her meal plan or dose for it, I think it gives a more
healthy attitude to food, so that she will not be always hankering after
"forbidden food".
It is obviously not as good as pumping would be but a step better than not
being able to have freedom to eat at different times and different sorts of
food.   As Sasha is not really on MDI either this is a compromise that works
for us, but I would really have welcomed a chance to have had help and
support from professional teaching DAFNEor carb counting.  I really hope
that it will be introduced in the UK.  There are quite a few kids in my
local support group who are struggling with daily high bg and high HbA1c who
this training would benefit greatly.  I do not tell my clinic what I do as I
know it would not meet with approval.

Mum of Sasha DX 1999 at the age of four

 Anyone been following this DAFNE program? Stands for Dosage Adjustment For
> Normal Eating. UK med pros are now examining whether it is practical to
> encourage and train people on injections to fiddle with their insulin
> each day so they can eat what they want, and still keep good control.
Hey -
> this forms the basis of pump therapy, but we're talking injections here
> since it's cheaper. I've got mixed feelings about this, since I reckon
> without the consistency of an accurately controlled basal rate that you
> with a pump, you cannot match insulin to food with any precision. If
> here managed to do that on injections, I'd love to know how you did it...
> Diabetes UK have an interesting article on DAFNE at
> http://www.diabetes.org.uk/update/summer01/selfadjust.htm
> John
> --
> mailto:email @ redacted
> http://www.webshowcase.net/johnneale
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