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RE: [IPk] Sasha's consultant

Hi Barbara

I am glad to hear that Charlie is not having anymore night time hypo's.
About the dangers, well I am sure that there are people with more medical
expertise than me on this list.  I far as I know the dangers with fits are
when they are very prolonged, as that can eventually interfere the breathing
and heart rate.   Also prolonged low blood sugar and unconsciousness can
rarely lead to swelling of the brain. I know someone who has a diabetic son
who is now 21, he once suffered a severe low blood sugar and was unconscious
for 24 hours but made a full recovery.   Events this serious are hopefully
rare and now that Charlie is on an insulin pump it is much less likely that
he will suffer from serious so many night time hypos. Plus he is always with
other children or adults who would be alerted to any problems quickly. Sasha
always makes so much noise that it is impossible not to hear when she has a
seizures.  We haven't had any for over 18 months now because we do night
checks.  I have spoken to parents on other lists whose children have had
diabetes for many years and have never experienced seizures.   Many children
do wake up when they are low.  Although that is not our experience.

Feel assured that pumping should make things better than they were.

Mum of Sasha

> -----Original Message-----
> From: email @ redacted [mailto:email @ redacted]On
> Behalf Of Barbara Dalton
> Sent: 01 December 2002 09:25
> To: email @ redacted
> Subject: Re: [IPk] Sasha's consultant

> Night time hypos were the most worrying thing before Charlie went
> on a pump.
> Touch wood, he hasn't had one in the last five weeks. The first
> symptom of a
> night hypo was mild twitching which could turn very violent. (On
> a number of
> occasions he damaged himself quite badly.) Then he would sink into
> unrousable unconsciousness and nothing but a 999 call would help. When at
> home he sleeps with us or one of his siblings so that we could hear and at
> school, the boys is his dorm have got used to calling the nurse
> when things
> start happening. This was all despite many changes in long acting insulin
> and the largest bedtime snack he could stomach before going to
> sleep. Let's
> hope he'll have no more of these now he's pumping.
> There is one thing I have wanted to ask but never had the courage - are
> these sever hypos dangerous? Could something have happened to him?
> Barbara D
> ----- Original Message -----
> From: "Jackie Jacombs" <email @ redacted>
> To: <email @ redacted>
> Sent: Sunday, December 01, 2002 12:09 AM
> Subject: RE: [IPk] Sasha's consultant
> > Please do your share and make a tax deductible donation to the FALL
> > pledge drive. Your help is needed to raise the remaining funds
> > necessary for Oct, Nov, Dec. Won't you please give $10 or $20 a year?
> >
> >     http://www.insulin-pumpers.org/donate.shtml
> >
> > Your annual contribution will eliminate this header from your IP mail
> >
> > 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
> > Friday!!
> >
> > I will write off list about my reservations about Glargine.  When I have
> > more time.
> >
> > Jackie
> >
> > >
> > > 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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