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RE: [IPk] Sasha's consultant

Hi Abigail

I think one of the reasons that Sasha's A1c is in the range it is, is
because Sasha is very sensitive to changes in bg but still cant tell if it
low or high so we have to test a lot.  If I am with her I can usually guess,
due to the previous bg and what she has just recently  eaten.  However we
are still surprised at times.  At school she tests if she feel "dizzy" as
she can never be sure if its high or low.  So school aren't treating hypos
that are really hypers, which used to happen before she started testing
herself.  Her bg swings around from one day to another at times.   What we
actually aim for and that's never any different from the beginning is to
have the pre meal bg between 5 and 7 mmols and post meal readings under 11
mmols.  Levels at 11.30 pm to be above 7 mmols and under 11 mmols.  I have
never strived to get a lower A1c as such, we just aim for these targets.
About 50% of the readings are on target though.   In the past Sasha has
about 6 terrifying hypos in the early hours of the morning at about 4.30am.
Due to too high a proportion of NPH to short acting.  Sasha has no dawn rise
and needs only a small nighttimes dose.  Then last year she developed
coeliac symptoms, low erratic bg, severe hypos needing glucagon,  milder
hypos where you would treat them and the bg just kept dropping and dropping.
As the clinic had no idea what was causing this we were just left to cope.
I started carb counting to cut out one of the variables and writing down
charts of food insulin and exercise to try and pin point what was going on I
didn't tell the clinic for fear of being branded neurotic.  Of course it
still taught me a lot but of course in the end coeliac was found to have
been the cause of lots of the problems.  But the experience of carb counting
was very valuable.  Since the last horrible hypo that Sasha had we always
test at night at around 2.30 am and I know that most people cannot do this,
but because we do we are able to catch lows or highs and correct.  The hypos
were just awful.  She seemed to be experiencing a living nightmare,
screaming and shouting  extremely distressed, unable to see, but at the same
time aware of what was happening because she wasn't unconscious.
We were told and I have read in books that people would probably wake up if
they went low but Sasha has never once woken up when she is low.  We have
caught quite a few lows at nights by testing.

 For months and months after I would wake up imagining that  I could hear
her screaming.  I keep the Insulatard as a minimum just enough to lower the
bg from the 11.30 readings.  I am horrified that some parents in my local
group say that they have to let their child be nearly 18mmols at 11.30pm to
be sure that their BG doesn't drop too low.  I cant understand why the Drs
don't change the insulin regimen so the child doesn't spend half the night
with high levels.

Anyway going back to recently. Some days we use the same insulin and Sasha
will run high levels, once she  gets to lunchtime and her bg is not below 6
mmols then the NPH seems to not work due to insulin resistance and
thereafter the BG rises and we have to give extra insulin after school
because she will be over 14 mmols.  Other days with the same insulin and
carbs she seems to be skimming hypo level all day.  If we drop the insulin
dose by half a unit then instead of having any reasonable figures they are
very raised.  We haven't ever been able to get levels where they are just
steady but slightly higher than ideal.  Well, that's probably expecting too
much!  But you'd think that if Sasha was running slightly too low each day,
that dropping half a unit would mean just slightly higher levels but it
doesn't seem to work like that.

She had an unpleasant hypo after school this week when she had been being
chased by some boisterous boys ( she said she didn't want them to catch her,
Hmmm!)  at lunchtime and then played football for nearly an hour for games
lesson.  She did have a snack before and after games.   We have had an odd
time this week with bg.  Especially after the insulatard overdose last

I will write off list about my reservations about Glargine.  When I have
more time.


> Jackie
> I do sympathise but with Sascha's A1cs, her future health is
> protected to a
> far greater degree than most kids. Not that A1c is everything and
> I know how
> bad hypos and hypers can make you feel. Has she had severe or
> prolonged hypos
> recently?
> It must be maddening when all medics see is A1c and you know Sacsha is not
> feeling her best
> I'd either do some homework and ask your GP to refer to someone
> who puts kids
> on pumps, or agree to see the diabeologist who might know of
> paeds teams who
> do support pumpers
> I'd be interested to know why you have reservations about glargine. Is it
> because Sascha has basal rates that obviously vary from one part
> of the day to
> another?
> All I can say is you are doing incredibly well and he ( ie consultant ) is
> probably astounded and can't understand the fluctuations in BG as
> he does not
> have to live with them
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