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Re: [IPk] one injection per day

Hi Joanne

It just seems like the clinic can't be bothered to work out what to do.  Just
because the Ac1 is in the range they like, but at what expense! insulin should
fit the life style not the other way around.  It's plainly obvious to all but
the clinic that the insulin regimen is not right.  There are several ways of
achieving that level of Ac1 without a child being high in the morning and
dropping all afternoon and nighttime.

I hope you will be able to get them to change something as it not fair to
Miles to have to put up with hypos like this and high blood sugars in the

Could you split the dose you are on into two doses or would they go mad?

I would definitely try to see another clinic.  But I do know that some parents
at my clinic have similar trouble with Dr's not wanting to change things
because they are happy with the AC1.  I just dont understand it.  It make me
wonder if it's because they have to submit data saying that so many % of their
children achieve an Ac1 of a certain level and it looks good on their records.
Clinics don't like it if too many children have high Ac1s it looks better on
their records if they have a certain number of children in a certain range.
Perhaps they are afraid that his Ac1 might increase.  I just cannot think why
they wouldn't be willing to try a different regimen.

Thinking of you

----- Original Message -----
From: "JOANNE CHALLIS-BAILEY" <email @ redacted>
To: <email @ redacted>
Sent: 03 June 2002 14:38
Subject: Re: [IPk] one injection per day

> Hi Jackie
> Miles has been diagnosed for 2 years now and has been on one injection of
> 30/70 for all of that time.
> When i question the consultant about trying different mixes i get told that
> they dont want to change it as in the last 2 years his HB1a has alwys been 8
> which they are happy with for a child of his age.
> We have our appt in july and i have a list of questions and suggestions and
> now miles willbe starting school in sept i want to know what they are
> planning to do.
> We dont even have any insulin to give miles if they are off the scale we
> just have to stick with the one a day, the only time we can give fast acting
> is if he is ill and has ketones with the high readings. I read what you and
> other parents say about giving an extra jab if your child is high or wants
> to eat and think why cant we do that. Its not even if Miles moans about the
> jabs he takes them really well, and is now testing his own sugars.
> jo
> From: "Jackie Jacombs" <email @ redacted>
> Reply-To: email @ redacted
> To: "Insulin Pump List" <email @ redacted>
> Subject: Re: [IPk] one injection per day
> Date: Mon, 3 Jun 2002 10:07:40 +0100
> Hi Joanne
> I do feel for you and know several mothers at my clinic where this is
> happening to their child too.  I just dont understand why they cannot do
> something about it.  In most other countries they dont use mixed (pre mixed
> that is) for children or adults.  They special use a dose for that child
> drawing it up in  a syringe.  By using pen devices which are convenient and
> easy
> to use I feel that the diabetes teams seem to be taking the lazy way out and
> not adjusting doses to suit the child or the situation (in honeymoon still
> for
> example).  I have yet to meet anyone who is having problemsbeing shown how
> to
> use a syringe but there is no reason why Miles couldn't try  a different mix
> of
> insulin.  Mixtard 40/60 has more short acting to  cover the breakfast meal
> and
> less long acting so that Miles should not continue to drop in the afternoon.
> If Miles has to go to be with levels of 18 mmols this is not right at all in
> my opinion.  (only a lay person)  It means that he has high levels for too
> long unnecessarily.  There is also mixtard 50/50 which has even more short
> acting.  Only by trying different ones can you see which  may be right.
> We did have a good year on Mixtard 30 but then changed to 40 which was
> better
> at the time.  Of course a lot depends on the age of your child and how well
> they eat.  If they are young and picky eaters then more long acting is
> probably the reason for them using mix 10 as it will cover the grazing
> through
> the day.
> Did they give you a reason why they wont change things.  At one time our
> pead
> was reluctant to change things as Sasha HbA1c was 7.2  so he thought thats
> fine, which it is but what he couldnt see and didnt have to live with was
> the
> huge highs post meals and the huge drops at night and the fact that if you
> increase the insulin you end up with more of both sorts when you only want
> more short or long acting.
> One thing you can do to see if you can get better post meal levels is to
> make
> sure that you do always give the insulin 20 if not 30 minutes before the
> meal.
> If the sugars are higher than about 6.5 we used to have to give Sasha the
> insulin much earlier than that.  Occasionally some children are very
> sensitive to Mixtard or Actrapid and you may not have to give them it so far
> ahead but this is usually not the case.
> We really had the best, most predictable results when I separated the
> insulin
> and gave separate Insulatard and Novorapid.  We did use Actrapid separately
> too, before we got Novorapid.  Insulatard is the longer lasting element of
> mixtard.  So Mixtard is just Actrapid and Insulatard mixed together in
> different proportions like Mixtard 10, 30 ,40 ,50
> Good luck with your quest for a pump.  I forget how long Miles has had D
> for.
> If your very unhappy, document why you are not happy go to see your GP and
> show
> him that you dont think he is receiving the best attention.  It doesn't
> matter
> if the A1c is good it not nice for Miles to feel unwell at times because his
> blood sugar is too high and then too low.  Your GP may refer you to another
> clinic.    It may be that you need to go to another clinic if you decide to
> seriously go for pumping.
> Jackie
> The only thing
> ----- Original Message -----
> From: "JOANNE CHALLIS-BAILEY" <email @ redacted>
> To: <email @ redacted>
> Sent: 03 June 2002 09:10
> Subject: Re: [IPk] one injection per day
>  > Barbara,
>  >
>  > Miles is on the 30/70 mix and his reading are exactly the same as
> Danielle,
>  > once he has breakfast its in the 20's, then no mid morning snack, small
> amt
>  > of lunch but then in the afternoon he either has a hypo or sugars go low
>  > enough that i have to feed him. Im sure this is contributing to Miles
> being
>  > a big child, i  seem to be feeding the lows in the afternoon.
>  >
>  > I know that he only eats low fat high in carbohydrate food but i think it
> is
>  > the quantity of food.
>  >
>  > i cannot let Miles go to bed with suagrs any less that 18 otherwise he
> will
>  > hypo, this cant be right but they wont change anything, I am contacting
>  > Minimed today so they can send me the video.
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