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



Joanne


I have just replied to your other mail and have now seen this mail!

It is horrifying!!  What are your D team playing at .  This seems like gross
negligence to me!!

What reasons have they got for not changing the insulin doses.

Sasha has had at least 5 serious seizures due to too much long lasting and
even my team who aren't ones for doing a lot agreed to change the insulin.

This is terrible, one seizure is bad enough but to have had several and the
diabetes team do nothing is awful. Disgusting.  I could understand it if his
levels
were normal and that the low occured due to unexpected exercise but for him
to be so high and then drop so much is not right at all.

I would write down exactly what you have said and go to your GP as soon as
possible and ask to be referred somewhere else.

I am very angry on your behalf.

Hypos can be  very dangerous. A seizure that goes on for long can be life
threatening. Please go and see your GP as soon as possible.  What if you didnt
hear him one night! I feel very upset for you and Miles.

Jackie





----- Original Message -----
From: "JOANNE CHALLIS-BAILEY" <email @ redacted>
To: <email @ redacted>
Sent: 03 June 2002 09:25
Subject: Re: [IPk] I've started the ball rolling!


> Hi Tony
>
> As a parent of a diabetic child, i dont see Miles frequent hypos as a
> 'problem' it breaks my heart.
> When you see your child lying in bed with eyes as wide as saucers, fitting,
> halucinating, screaming that he hates you and doesnt want you anywhere near
> him, trying to get him to eat or drink something, then realising that he
> wont and having to force hypostop into his mouth and then god forbid if that
> doesnt work having to give the dreaded 'orange kit' (as its known in our
> house). You suddenly realise that this is what you are here for and nothing
> else that happens actually matters.
>
> Since Miles has been diagnosed i have given up my career and stay at home to
> look after him, he is due to start school part time in sept and i will be
> there constantly by the phone in case he needs me.
>
> My main concern is that nobody will tell me what the effects are on Miles if
> he continues to have frequent hypos, is it causing him any damage to his
> brain, etc, but in answer to your question Tony, Miles hypos are not a
> problem to him as 99% of the time he doesnt remember but to me although i
> know i have to cope, im all hes got, there are occasions when i dont think i
> can, but i will....
>
> Jo
> From: "Tony O'Sullivan" <email @ redacted>
> Reply-To: email @ redacted
> To: <email @ redacted>
> Subject: Re: [IPk] I've started the ball rolling!
> Date: Mon, 3 Jun 2002 01:34:47 +0100
>
> 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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>  >
>  >
>  >
>  >
>  >
>  > JOANNE
>  >
>  >
>  > _________________________________________________________________
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>
>
>
>
>
> JOANNE
>
>
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