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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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HELP@insulin-pumpers.org
 >  > > 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
 > ----------------------------------------------------------
 > for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
 > help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml
 >
 >
 >
 >
 >
 > JOANNE
 >
 >
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JOANNE


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