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Re: [IPk] I've started the ball rolling!



Tony

>From my point of view a mother of a 4 year old diabetic son, like Jackie and 
Barbara I try to give Miles as normal a life as possible. This means he gets 
treats when hes good, when we go out for the day he has an ice-cream etc, 
yes it is hard and we have to make sure that he then runs around for 20 mins 
to make sure he burns it all off, but hes a child and yes its worth it.

Miles' sugars are so up and down constantly that i feel that life couldnt 
get any harder, with a young child you have constant battles with 
injections, blood testing and the most frequent one, food, he doesnt want it 
when he should and does when he cant.

We are only on one injection a day at the moment and as far as our clinic is 
concerned as his HBA1C is always around 8.0 they are happy and will not 
change anything, this doesnt help us though with the highs and lows and we 
have continually every day. A young child is so unpredictable in everything 
they do, one day they couldnt be running around playing football and the 
next siting in watching TV all day.

We are looking into getting a pump at the moment and good luck to Barbara.

Jo


From: "Tony O'Sullivan" <email @ redacted>
Reply-To: email @ redacted
To: <email @ redacted>
Subject: Re: [IPk] I've started the ball rolling!
Date: Tue, 28 May 2002 23:42:21 +0100

Jackie, you and Sasha have to take a bow for getting such great results
while allowing normal treats. This is the key to leading a normal life with
diabetes, and shame on your various team members for not recognising that
you have cracked it and that you basically know more than them, which you
certainly do.

But does that success come at a cost? You have to be up every night, and
Sasha has to put up with a lot of hypos. Does that impact on your lives, and
is the extra effort worth it? I'm not questioning, because I know nothing
about managing young kids with diabetes, but I am inquisitive.

Tony
----- Original Message -----
From: "Jackie Jacombs" <email @ redacted>
To: "Insulin Pump List" <email @ redacted>
Sent: Tuesday, May 28, 2002 11:22 PM
Subject: Re: [IPk] I've started the ball rolling!


 > Hi Babs
 >
 >
 > Well you seem to have got that bit all sorted out then,  I don't think I
will
 > get any support from my D team to go elsewhere.  Sasha's last HbA1c was
5.5
 > the one before was 5.9 the highest its ever been is 7.2.  I  got told off
the
 > last time as he  it was too low he said the one before that was too.  Yet
 > Sasha hasn't been having as many hypos as she was before.  Since changing
to
 > Novorapid she has much better post prandial readings and as we always
check at
 > 2.30 am we correct highs and lows so her reading over night are usual 
very
 > good.  She has no dawn rise to contend with either.  So we are not 
obvious
 > pump candidates.
 >
 > I think he thought as we did that some of the good HbA1cs were due to the
 > untreated/undiagnosed coeliac disease causing absorption problems but now
it's
 > 6 months on a gluten free diet so it cant be that.  The blood test show 
no
 > antibodies meaning that we have definitely kept to a strict diet.
 >
 > I dont bother to tell them I carb count because they dont believe in that
and
 > would probably accuse me of being obsessive.
 >
 >
 > I was a bit put out to as he wrote different doses in her log book, doing
 > things like changing 3= units of Novorapid to 3 units and 12= units of
 > Insultard to 12 unit etc.  I know damn well that if I only give Sasha 3
units
 > of Novo for breakfast  that by lunchtime she will be in the 10mmols range
and
 > not 5 or 6 mmols.  As she only has Insultard to see her though lunch if 
it
is
 > not lower than 7mmols she will be high all afternoon and feel lousy.  I
also
 > know that she need 12= unit and now maybe 13 units to get her though the
day
 > without going into to high before teatime.  It really peed me off.  The
HbA1c
 > that we were reviewing is always from 6 months before as they only take
the
 > blood when we come to clinic.  So he was telling me to alter doses that
 > weren't  relevant at all.  I dont know whether to pretend I cut back or
not.
 > I just cant sit back and not give her the insulin she needs because her 
bg
 > would be permanently raised.  I dont know how I can make her HbA1c higher
 > without ignoring high readings and not treating highs.
 >
 >
 > I dont tell them that she eats cakes, biscuits, sweets and ice-cream
either.
 > Most of my local parents D group dont give their kids yoghurts or stuff
that
 > has sugar or over a certain % in but Sasha eats the same as she always 
did
and
 > I dont look at the sugars on the yogs etc just the whole carb count.  BTW
just
 > in case you thought I give her sweets or ice cream all the time I dont.  
I
 > have never let my kids just have lots of sweets just as and when they
like.
 > They have to ask first and are not allowed to just take food without
asking.
 > Dani, 14 take no notice though!!
 >
 > Anyway when you start the pump it would be useful if you give us a
frequent
 > update on how it all goes and the problems etc and how you over come 
them.
 > Cant wait to hear how it goes.
 >
 >
 > Jackie
 >
 >
 > From: <email @ redacted>
 > To: <email @ redacted>
 > Sent: 28 May 2002 21:11
 > Subject: Re: [IPk] I've started the ball rolling!
 >
 >
 > > Hello Jackie
 > >
 > > Well, first of all I rang Danielle's diabetes nurse to ask her if 
anyone
at
 > > the hospital were on a pump and she told me they weren't.  I said "Well
I
 > > really want to try one for Danielle and it might mean changing
hospitals".
 > > She said that we could move hospitals with her blessing and she would
help
 > as
 > > much as she could with the moving.  I couldn't just leave it there so I
 > > explained to her what I knew about the pump and how everyone should 
have
 > one,
 > > etc.  She said that they have never learnt about them because no 
patient
has
 > > ever asked for one before.  She asked me to bear with her a few days
while
 > > she spoke to the consultant.  She rang me back about 3 days later and
said
 > > that the consultant was very happy to still see Danielle at his clinic
but
 > > that he would not be involved with the pump.  For instance, he said 
that
he
 > > would check her growth and HBA1c but we would have to accept that he
 > couldn't
 > > help with queries with the pump but he was happy that there is back-up
from
 > > the pump suppliers.
 > >
 > > As I said, I phoned Minimed today and asked them what I should do.  I
was
 > > told that I needed the consultant's approval first so I explained that 
I
had
 > > got this but they do not know anything about the pump.  They took all 
my
 > > details and said that our local pump nurse would get in touch with us
and
 > > visit.  Unfortunately she is on holiday for 2 weeks but I told them how
 > > desperate I was and they said they might get a paediatrician to speak 
to
me
 > > meanwhile.  I asked how long it would be before Danielle would actually
be
 > on
 > > the pump and she explained that all cases were different but if I was
 > > prepared to fund it, it could be 2 weeks after it is ordered.
 > >
 > > Minimed sent me an information pack which I received this morning.  
They
 > > included a video and I couldn't wait to watch it.  I was determined to
get
 > > the pump after I watched it and Danielle watched it with me.  The only
thing
 > > that concerns her is if it will hurt.
 > >
 > > I can't wait.
 > >
 > > Babs
 > > ----------------------------------------------------------
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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
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JOANNE


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