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RE: [IPk] DAFNE and fruity free foods...



Jackie

I have no idea what it must be like bringing up a child with diabetes. 
Having had it for 30+ years at this stage I am only now beginning to get my 
head around mine.

Well done that you are doing all that you are doing for Sasha. If DAFNE's 
helped you with this, then DAFNE's worked for Sasha.

Don't mind these rants from a crusty diabetic who dislikes the idea of 
producing weighing scales in public, but has been struggling with it as an 
attractive thought since starting pump. Invisible weighing scales would be 
just perfect. See-through pump - even better!

Someone mentioned recently in another thread about putting away her pump for 
a day. I had visions of her burying in the sock drawer (or did she say 
this?). I can kind of relate to this. I really don't want to have to think 
about my diabetes constantly. And carb counting triggers some of this 
resentment.

That said, I'm still well pleased with my new life on pump.

Keep on trucking!

Seos


>From: "Jackie Jacombs" <email @ redacted>
>Reply-To: email @ redacted
>To: <email @ redacted>
>Subject: RE: [IPk] DAFNE and fruity free foods...
>Date: Sat, 24 Jun 2006 15:23:19 +0100
>
>Hi Seos, Kat, et al
>
>
>I do not think that DAFNE, when it was introduced a few years ago was 
>intended
>  to "loosen people up" from the obsessive weighing everything. It was 
>introduced
>because most people who were diagnosed in the last 10 years or so were 
>given no
>  guidance on carb counting whatsoever let alone adjusting insulin doses. 
>People
>diagnosed before this time were taught carb portion counting or carb 
>counting.
>Indeed many were amazed that DAFNE was being  introduced as something brand 
>new
>and innovative, when they had been doing this all along for years.  For 
>some
>unknown reason,  carb portion estimation was stopped and its still not 
>taught,
>nor is carb counting in the majority of clinics.  When Sasha was diagnosed 
>7
>years ago carb counting and accurate portion estimation were not taught and
>consequently Sasha had roller coaster blood sugars all the time and 
>suffered
>from some severe hypos that resulted in seizures.  When asked about carb
>counting we were told, as are most parents still are, that carb counting is
>obsessive and "we dont do that anymore".  When we learnt to carb count 
>Sasha BG
>  levels improved no end. I cant believe now that this was not taught. We 
>had to
>keep this a secret from our diabetes team as they had made their 
>disapproval
>known and thought that this was totally obsessive!!   The only guidance we 
>were
>  given was to look at what was on the plate. We had no idea how little 
>carb is a
>small portion of mashed potato compared to a baked potato of a similar size 
>and
>there were lots of other foods that we were very surprised were much lower 
>or
>higher carb than we thought.  When we eventually moved to another hospital 
>to
>get Sasha on a pump we found that they were now starting carb counting 
>classes.
>DAFNE has never been available for children or their parents!
>
>I run an on- line email support list for families of children in the UK and 
>the
>majority of parents who have subscribed to the list are not supported in 
>carb
>counting, or carb estimation  by their child's clinic and the only help 
>most of
>  them have received is from other parents the UK Insulin pumpers list and
>finding
>articles on line or reading and buying the recommended books.  Indeed many 
>of
>the parents are "not allowed" to adjust or alter insulin doses without
>permission!!!  Though with the information that these parents get from 
>other
>parents who are carb counting and adjusting doses they have been able to
>challenge the advice given by the DSN's or consultant
>
>
>The attitude of many consultants and DSN's is that bothering to weigh and 
>carb
>  count is totally unnecessary but no one would suggest guessing the 
>insulin
>doses
>  and giving a different dose each time, or closing one's eyes and dialling 
>up
>any
>dose and injecting!!  In small children, not dosing for even a small amount 
>of
>  carb can result in the BG level being 20mmols instead of in range, 
>overdosing
>in
>a small child or baby is potentially very very serious.  There are parents 
>with
>babies of under a year old with type 1 diabetes being "looked after" by
>consultants and clinics without a clue about carb counting or diluting 
>insulin.
>It is indeed a terrible situation.
>
>
>There is no doubt that DAFNE has been a wonderful course for many people 
>who
>would have been left with little diabetes education.  Unfortunately its not
>available in all areas and not for parents or children and if they start to
>  "dumb it down" too much then we will be back at the same sad old 
>situation when
>people  were told not to bother with carb counting or portion estimation  
>just
>look at a plate and guess!!!
>
>
>Of all the available devices, pumps, meters, medicines and procedures we 
>have
>for treating diabetes, education remains our most important weapon against
>future complications and a good quality of life right now.
>
>
>Jackie Mum of Sasha aged 12.
>
>
>
> >
> > Yeah, interesting about lite, or maybe even lightening up. I get the 
>sense
> > that DAFNE is intended to loosen us up from fear/ritualised behaviour of
> > obsessively weighing everything. In my view diabetics are a rare breed 
>of
> > people who constantly struggle with the 'trying to get it right'. 
>Sometimes
> > overbearingly right, other times flawed and hypoed. This can be a good 
>and
> > bad thing, all things depending, but greater flexibility and the ability 
>to
> > improvise and enjoy life is a pretty neat DAFNE aim.
> >
> > On the down side? We come away with some inaccurate preconceptions (hey,
> > freedom! Fructose and strawberries and cherries - mine, all mine!). In 
>my
> > own case, being a DAFNE 'graduate' seems to have been used as one of the
> > many excuses as to why I wasnt being put on the pump at Kings. I ended 
>up
> > talking to John Davies at INPUT - whose advice was sterling - and went 
>to Dr
> > Kerr for 2nd opinion at Bournemouth - with blissful results.
> >
> > I'm glad I did DAFNE but today, as a new pumper, feel the need for a 
>tighter
> > overview.
> >
> > Still struggling - weighing scales in one hand, a pump in the other!
> >
> > Seos
> > contact: HELP@insulin-pumpers.org
>
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