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RE: [IPk] Insulin pumps and the lack of them!! and lack of knowledge

I believe that you are entitled to a second opinion. It may, however, be up 
to you to decide which consultant you would like to be referred to - only 
way I found out was by ringing round hospitals.
The major stumbling block, which in an ideal world, would not be relevant is 
that Sasha's HbA1Cs are remarkably good. However, as we all know they don't 
tell the total picture of swings between highs and lows and all the misery 
that that brings. I suppose the concern with the 'low' HbA1C readings is 
that Sasha may have been hypo quite a lot to achieve that - please, I am not 
saying that is true. I think it's the ssumption that would be made. This 
weekend in the presentation given by the Dr which was, I thought supposed to 
be 'a geeing up before you leave exercise' he assured us all that 'none of 
your children will develop these complications' (um, how empty is that 
promise?) He also stated that 'each time your child has a hypo, some of 
their brain cells are killed off and of course they don't regenerate'. This 
was in relation to children having cognitive problems as a result of hypos, 
particularly in the very young (up to age 5/6).

At least one of the children who recently has started pumping on the Wirral 
has been taken on purely on 'quality of life' (and received funding).

I MUST do something else now.

>From: "Jackie Jacombs" <email @ redacted>
>Reply-To: email @ redacted
>To: <email @ redacted>
>Subject: RE: [IPk] Insulin pumps and the lack of them!! and lack of   
>Date: Wed, 25 Sep 2002 10:15:25 +0100
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>Hi Heather
>My own consultant is totally not interested in pumps and knows very little
>about them, he's senior paediatric consultant and Cheltenham but not a
>diabetic specialist.  I actually think he's anti pump.  Sasha's  last  
>was 6.2 we have had 5.5 and 5.9 before now which he said was too low (the
>5.5 and 5.9).  He was pleased with the 6.2. which I wouldn't get without
>carb counting.  Although I don't check a lot of stuff now because we just
>remember what things are.  I don't even tell the clinic that I carb count 
>case they think I am obsessed!!!
>I don't think that he would refer us to another hospital.
>How far away is your hospital from you now.  If there is a serious problem
>with Sam due to ketoacidosis or a vomiting sick bug where would you go to??
>Does your local hospital do the HbA1cs and other checks??
>Jackie, England
>Mum of Sasha aged 8 dx 1999, twin sister Rebecca, both coeliac 2001
>Mum also to Danni and Nicola, wife to Terry
> > Jackie,
> > We had problems trying to get Sam onto his pump. Our consultant
> > at our local
> > hospital referred us to the Manchester Diabetes Centre as he was
> > aware that
> > there were patients using pumps there. What was not understood was that
> > there were only a few (I think 3 or 4) children using pumps and
> > for a host
> > of reasonable (to them) reasons they didn't want to take on a
> > child of Sam's
> > age when we lived 50 or so miles away from the hospital. So we
> > did have to
> > go through meeting the team in Manchester and being rejected
> > which was very
> > distressing.  Then through some suggestions from John Davis and
> > Jill Jones
> > from Medtronic I did cold call several large hospitals in the north of
> > England and spoke to  Paediatric DSNs to guage their reaction and
> > approach
> > to pump therapy. I did find 3 DSNs which discussed our situation
> > with their
> > consultants and confirmed that they'd be sympathetic to our request but
> > would obvioulsy need to see us first. We decided that Harrogate
> > would be the
> > preferred choice because of Sandra Dudley's involvement with PUMP
> > (running
> > courses on pump therapy for medical professionals), our
> > consultant was also
> > happier to refer us to them. So that's what we did. So we're
> > under wonderful
> > Harrogate for Sam's pump treatment. We've also received much
> > needed support
> > from Jill Jones. It certainly hasn't been an easy path and isn't for the
> > feint hearted. (By the way when we went ot Harrogate, there was a
> > lady who
> > had travelled from the south coast to be put on a pump!)
> > I'm not very good at short consise emails, am I?!
> > Heather
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