[IPk] Sasha's pump now postponed or cancelled!
Last week Sasha wore a CGMS for 3 days.
I feel so upset today. The diabetes nurse from Gloucester Hospital has
phoned us having said that the results of Sasha's CGMS were "interesting".
We did worry that they wouldn't be of help in being able to adjust anything
because we had three days where we had some extreme BG levels. But of
course that's one of the reasons we wanted a pump.
They are suggesting that our carb counting and insulin ratios are all wrong
and they need to think about a pump again because we need some months of
accurate carb counting under our belts before we can even think about
pumping. It sounded rather like they were having doubts about giving Sasha
a pump full stop!
On the first evening after the monitor was fitted Sasha was OK for the first
few hours, good BG levels, then I gave Novorapid with her evening meal. But
as I pulled the needle the injection site bled immediately. I thought to
myself, I hope all the Novorapid hadn't come out with the bleeding. As you
can't tell whether it has or not I had to assume it was ok and just check
later. However the BG level rose and by 11.30 pm her BG level 18 mmol!! So
we gave 2.5 units to correct the high. Apparently that was a BAD thing to
do as at the Gloucester Hospital they would never correct a high level at
night time. But we have always been told to give 2 units for BG levels over
15 mmols. The nurse said that they leave high levels to come down overnight
on their own. However because we have Sasha's insulatard set at the very
minimum possible amount due to nigh time hypos, her BG levels never come
down without extra insulin.
Also we use a different carb to insulin rate for breakfast, lunch and
evening meal. However when I talked to the dietician at Glos earlier last
month she didn't think that was correct and seemed to imply that the insulin
to carb rate is constant throughout the day. I don't know if that's what the
consultant thinks as well and maybe the diabetes nurses.
There were also three hypos below 3.8 that showed up on our meter but no
hypos shown on their download of the CGMS. We have these recorded on the
One night Sasha had dropped to 4.8 at 2.30 am and we were worried it might
drop futher so gave her just half a small cup of milk which only amounted to
5 carbs. In the morning at 7.30 she was 13 mmols. I did think maybe it was
a rebound high, but apparently there was no hypo and they are questioning
why we gave food in the night and think we gave too much, but we didn't and
in the past no way would 5 grams of carbs shoot her up to 13 mmols. So this
was very unusual. I had thought that the CGMS reading would be a help to
get us a pump but now it seems to have had the opposite effect. The last
afternoon on the pump wasn't very good either because the monitor kept
alarming saying there was a calibration error. So I assume that must have
meant that the monitor was giving different readings than the meters were.
We have to attend carb counting classes on Friday and then wait and see the
consultant in the afternoon because she is now doubtful about Sasha having a
pump because of the crazy GB levels.
When we removed the sensor it wasn't straight but curled over in quite a
bend. Does anyone know if this would have caused the reading from the CGMS
monitor to be wrong?? We still have it as Sasha wanted it as a souvenir.
Jackie, England UK
Mum of Sasha aged 10 dx 1999, twin sister Rebecca, both coeliac 2001
Mum also to Danni and Nicola, wife to Terry
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