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Re: [IPk] I've started the ball rolling!

Hi Tony

I don't think she is having more hypos in fact she is having far fewer since
we changed to Novorapid.  We give separate doses of fast acting and
intermediate acting and NPH seems ok for Sasha and doesn't cause any
particularly unpredictable drops.  In fact against the D teams advice I give
her NPH at 7.30 pm (instead of 9.30pm) so that it will have peaked at 11.30pm
so I know what is likely to be happening to her bg levels thereafter.  She has
no dawn rise so I dont need to give more NPH to counteract this, although of
course this may change in the next couple of years.  She always tests at
school at lunchtime so that I know if we are on track with the previous dose
of insulin.  She is very sensitive to changes in levels up or down but can't
always recognise the difference so we have to test.  So we probably test at
least 6  times a day. Which, amazingly she has never minded. She doesn't wake
at night when we check .  It may be more if she is doing swimming or gym for a
hour.  I carb count her meals.  We started doing this in the months before she
was DXed with coeliac because we could understand why her levels were so
erratic and that she had so many hypos that didn't respond to the usual stuff.
Of course we thought at first it was something we were doing wrong!

I dont count everything now I can usually make a pretty good guess.  If we
start going off track I will go back to checking again for a while.  We
started testing during the night when had 5 or 6 seizures in the first 18
months and then before Christmas the coeliac was making the food absorption a
total nightmare.  Low for hours after meals, then sky high when the food had
reached a less damaged part of the gut.  During this time we were testing
several times a night.   So now it's a habit and sometimes I have vivid dreams
of her having a seizure and I find it hard to go thought the night without
checking the once.  The reason for the seizures were due to using 30/70 mix
once we got off that we have not had another nocturnal seizure.  She goes low
from time to time but less now than she did when her Hba was 7.2.

I haven't deliberately tried to get the Hba lower at all.  All I do is try to
get most the morning levels to be about 5 or 6 mmols the lunchtime one about
the same, the  one before the evening meal is usually higher.  She needs to be
about 8mmols to go though the night and she only has enough NPH to just keep
her levels from rising not enough to drop very much overnight therefore if her
bg levels are over 10 mmols I give her = unit of NR and more if it is above 14
mmols.  We then always check if we have given her extra insulin just in case.
I prefer to use just enough NR to lower the levels than use a higher level of
NPH.  One thing we noticed from the overnight testing was that if her levels
had been good overnight then she would be much more insulin sensitive on the
other hand if she had been high at 11pm then still high at 2.30 and probably
most of the night them we would need to give a least a 1= unit more than
normal.  If her levels are low overnight and on waking then she will need
less.  Having worked this out only recently it means that we have more
predictable levels during the day.
So we try to have 5 or 6 mmol before meals and 10mmol or less 2 hours after.
We don't normally check 2 hours after but if we have checked for some reason
when things are going ok it is in the range.  We still have totally unexpected
highs of 20 mmols occasionally. On  Saturdays Sasha and her sister go off all
afternoon to a theatre group where they do singing, dancing and drama and are
gone for 3 hours.  I am always worried about hypos there as she has never gone
low there and if she does it may be a shock for the staff, she has never even
checked her levels whilst there but usually comes back with levels over
14mmols but this obviously doesn't effect the eventual Hba's.

If she goes low at school there is a chart saying how many glucose tabs to
give or drinks or biscuits so she doesn't get overtreated.  Which use to
happen all the time in the infant school.  Anyway for young kids it's never
far from meal or snack time.  I think the pead thinks we might deliberately
try to get her HbA lower but we dont, we only go by what we were told were
suitable levels, we have just got better at hitting the targets more of the
time.  I would be happy for it to be a bit higher.  Sasha has a high carb diet
really. She's not keen on meat or protein foods so perhaps that make her
levels easier to manage as we haven't got protein digesting later to cause
rises hours down the line.  Still haven't cracked with pizza's though!

As a young child your parents have control over what and when they eat but of
course when she is a teenager she is probably going to eat more things when
she feels tempted and I wont be able to stop her at times.  I keep the sweets
in a cupboard and I know that I shouldnt eat so many chocolates but I haven't
got anyone breathing down my neck to stop me.  My willpower is sadly lacking.
So if I had restrictions on what and when I ate then I would have a job
keeping to it.

I would like not to have to check in the night but I dont think I could now go
that long without checking once.  My husband is going away for 3 weeks soon so
I may have to stop checking some nights or I will be unable to get up each
day, he does some of the night checks.  He didnt do them until he had been
with Sasha during a seizure.  He didnt see the first two.  After that he had
no trouble checking.


----- Original Message -----
From: "Tony O'Sullivan" <email @ redacted>
To: <email @ redacted>
Sent: 28 May 2002 23:42
Subject: Re: [IPk] I've started the ball rolling!

> Jackie, you and Sasha have to take a bow for getting such great results
> while allowing normal treats. This is the key to leading a normal life with
> diabetes, and shame on your various team members for not recognising that
> you have cracked it and that you basically know more than them, which you
> certainly do.
> But does that success come at a cost? You have to be up every night, and
> Sasha has to put up with a lot of hypos. Does that impact on your lives, and
> is the extra effort worth it? I'm not questioning, because I know nothing
> about managing young kids with diabetes, but I am inquisitive.
> Tony
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