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Re: [IPk] Sasha's pump now postponed or cancelled!



"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". 
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!"

I am sure they will accept her for the pump.  As you say the results you are 
getting are the exact reason for going on the pump and I am sure you are 
doing the ratios correctly and they will soon realise this too.  the 
Professionals have no idea what it is like to be diabetic.

"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."

They shouldn't knock you like this.  It is only with experience that all 
parties will learn the correct thing to do for Sash at various times of the 
day.  We have all gone through this and know that the pump basals may need 
to be changed alsost hourly and may need to be changed but until you see the 
patters this cannot be sorted out.

"However because  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."

 I used to think this but I had criticism just after Christmas and have 
since introduced this and things are getting better.  It seems to me that if 
you keep your ratio constant, the basal rate has to be too high at certain 
times of the day to compensate and then it is not possible to move the times 
of meals and other things without going hypo.  It is simply a mathematical 
problem when you study it.

"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 
meter though."

The conference and my web reading haveexplained this to me too.  The levels 
are different in different parts of the body.  Only the fingertips give the 
correct readings and the others can be 20 minutes out.

"ne 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."

All days are unusual and different from others.  Even the stress of wearing 
the monitor would I think affect the readings.  I think this is so in the 
same way that putting in a new set can cause a high for some hours as I 
think the body knows this is an 'attack' .

"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. "

Try to relax.  I am sure everything will work out with time.  It is awful 
for you to have to sort out your daughter.  It is bad enouth when we do it 
for ourselves.

" 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."

I hope all goes well.  Keep calm to show them you know it all and are 
willing to learn more as time goes on.

" 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."

I think this will have caused problems.  I also find that varying digestion 
problems affect the control and I see Sasha is a celiaac (sp).  I have just 
deleted the word!

I have gone through changing my basals and insulin/carb ratios for a month 
and am exhausted.  I think I am getting there.  I was controlled before when 
I had them with the basals going high at mealtimes and I will get there 
eventually.  I know you will get this sorted out.  I know I am not a child 
but just had to write to you as your story touched me.

June 
.
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