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



Jo, this seems to be another common situation, even if it is very different
from Jackie and Sasha's. It does seem like 8 is commonly accepted as OK for
a young child, and I suppose they are saying that the only reason for
changing his regime from one injection a day would be to reduce hypos. (By
the way, I'm neither a paediatrician nor a diabetes expert, just a
well-informed amateur like everyone else on this site!).

Are hypos a big burden for Miles? Or are they a bigger problem for his
parents!

Tony

----- Original Message -----
From: "JOANNE CHALLIS-BAILEY" <email @ redacted>
To: <email @ redacted>
Sent: Wednesday, May 29, 2002 7:41 AM
Subject: 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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> ----------------------------------------------------------
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>
>
>
>
>
> JOANNE
>
>
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