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

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
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
 and giving a different dose each time, or closing one's eyes and dialling up
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
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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