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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.


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
> 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
> 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
> 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
> 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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