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RE: [IPk] Charlie Dalton



Hi Barbara


Well it sounds like you have it pretty much sorted and covered.  You are so
close the hospitals and with the D team coming out to Charlie's school it
all sound very good.  Roll on getting Charlie on the pump then.  Have you
got a date for going on the pump yet?  It's a shame that he has had such a
hard time so far.  I end up testing every night at 2.30 am because of the
seizures that Sasha has had in the past in the early hours of the morning.

You will have to let us know how things go when Charlie starts pumping.

 Jackie

> Hi Jackie
>
> Thanks for your reply.
> We are lucky that Charlie's diabetic team are so enlightened and that they
> are applying for funding etc for the fund. I think the team at Kings' is
> fantastic. We are five minutes by car from Kings'
>
> Charlie ends up in A&E because, despite his daytime sugars running so
> uncontrollably high (18 - 30+ every day) he hypos in the night, becoming
> unrousably unconscious and fitting violently. We are five minutes by car
> from Kings' and Charlie is at school in the city of London so is near
> Bart's, Guys, St Thomas' - and we've stayed in all of them! (Often thought
> about writing a Good Hospital Guide form the patients point of
> view!!!!!!!!!) To try to level out the day highs and night lows. he has
> tried every kind of insulin, varied the amounts and has a very
> strict diet.
> His life as a chorister is very busy but very timetabled - a good
> thing for
> his diabetes because meals are never late and snacks are provided
> regularly.
> The school is very flexible about him needing snacks at other
> times if he is
> 'wobbly'.  (He is small and underweight for his age.)
>
> The two school nurses have taken his diabetes very seriously. The
> team from
> Kings has been to Charlie's school to train all the staff and the
> nurses run
> 'refresher' sessions for new staff. They regularly telephone the team at
> Kings' to ask advice and they always find they listen and support well.
>
> Insulin
> Charlie takes Mixtard in the morning, Novarapid before supper and
> Insulatard
> at bedtime.
>
> Best wishes
>
> Barbara
>
>
>
> ----- Original Message -----
> From: "Jackie Jacombs" <email @ redacted>
> To: <email @ redacted>
> Sent: Wednesday, September 25, 2002 7:53 PM
> Subject: RE: [IPk] Charlie Dalton
>
>
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> >
> > Hi Barbara
> >
> >
> > I think you are extremely lucky that you have  an educated
> diabetes  team
> > who have actually suggest the pump.  Don't forget a lot of people
> subscribe
> > to this list and don't necessarily post much because the are not having
> any
> > problems.  My daughter does not pump, so I can only go by what other
> parents
> > have said.  I subscribe to Children with Diabetes mailing list for the
> U.S.
> > where over half the posters seem to have children pumping.
> It's not all
> > plain sailing to begin with and there are things to watch out for.  When
> > Charlie first starts on the pump I imagine he will need a lot
> of help and
> > support to begin with and he will need to be very careful that any high
> > sugar levels are checked out quickly and any problems dealt
> with swiftly.
> > If you are pumping then you have no long acting insulin on board and
> > problems can escalate very quickly if the sugars are raised for long.
> When
> > you get more information about pumping you will to told all this and the
> > protocols to follow.
> >
> > Just because you have qualified nurses at your sons school don't assume
> that
> > they know much about diabetes, most nurses know very little.
> Parents who
> > are nurses themselves and then  find that they have to deal with a
> diabetic
> > son or daughter are often staggered how little they do know.  So the
> nurses
> > at the school will have to be taught exactly what to do.
> >
> > You say that he won't end up in A&E so often?  Has he had problems with
> > hypos??
> >
> > The professionals that I have come across have been very negative about
> > pumping but I don't believe they should be.  Most have never even seen
> > someone on a pump or have talked so someone who does use a pump.
> >
> > Your son's blood sugar levels are very high if they are persistently in
> this
> > range. 18 - 30 mmols You need to speak to your diabetes team
> about what to
> > do at the moment and try and get is sorted out.
> >
> > What insulin does you son take??? and is he injecting short acting three
> > times a day and longer acting at night (MDI) or taking pre
> mixed insulin?
> >
> > It is very hard to keep the levels within a normal range, with Sasha, if
> she
> > has slightly too much or too little insulin, half a unit is
> enough to make
> a
> > big difference. An extra small biscuit will make a difference
> between the
> > next blood test being within normal ranges or over 16 mmols.  I
> don't know
> > if this is the same with everyone but most people I speak to in my local
> > support group say this seems to happen with young children.
> Sasha is only
> 8
> > and your son is 10 so maybe an extra biscuit or apple here and
> there would
> > not make a such a huge difference.
> >
> > If Charlie is having hypos at night  he is probably having too
> much longer
> > acting insulin.  Especially, if as you say, he is eating a reasonable
> snack
> > before bedtime.  Again your diabetes team should be able to
> sort this out.
> >
> > How near will the hospital be that deals with your son when he is on the
> > pump??
> >
> > Stress can make the blood sugars rise but if he is a full time
> boarder at
> > this school and being a chorister is what he wants and it sounds like it
> is,
> > then I would assume that things will settle down and things wont seem so
> > stressful and new.
> >
> >
> > I am sure that anyone who has a child on a pump will be able to
> make more
> > suggestions
> >
> > Mum of Sasha aged 8 years
> >
> > Novorapid x 2
> > Insulatard x 2
> >
> > If he is having hypo
> > >
> > > from Barbara, mother of Charlie aged 10 who has been recommended
> > > a pump by his
> > > consultant at Kings' College Hospital.
> > >
> > > I avidly read all your messages daily to get more info on what we
> > > are about to
> > > embark. However, I am beginning to feel rather scared - so
> many of your
> > > messages seem to be about problems with equipment, support and
> > > the uninformed
> > > views of so called professionals. Having received so much
> > > positive personal
> > > encouragement form members of the site, I am now wondering if we
> > > are embarking
> > > on the right track. Charlie boards at school and the two nurses
> > > and Head are
> > > wholly supportive of  Charlie's decision to try a pump. He knows
> > > he will be
> > > healthier and not end up in A&E so often and is feeling very
> > > positive about
> > > the whole thing. It's just me panicking!!
> > >
> > > Another thing, Charlie seems unable to keep stable BMs. He is
> > > usually anything
> > > between 18 and 30 during the day but has frequent night hypos
> > > despite eating
> > > cereal etc on going to bed. Any advice? His diet is good, he
> > > loves food and
> > > the school monitor how much he eats every day. No problems there.
> > > But despite
> > > changing insulin's, amounts etc we are unable to keep to a happy
> > > medium. Is
> > > this very unusual? Could it be the stress of a 'high-profile'
> > > chorister life
> > > that affects everything? I feel so ignorant.
> > > Thanks
> > >
> > > Barbara
> > > ----------------------------------------------------------
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> HELP@insulin-pumpers.org
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----------------------------------------------------------
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help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml
----------------------------------------------------------
for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml