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RE: [IPk] Lantus v. pump

Hi Melissa

 A late response because I have busy, I have been writing a letter/document
giving reasons why I think
 that Sasha meets the NICE Criteria funding for a pump and why I think she is a
suitable candidate.

> Hi Jackie,
> By 'a safe place to put the pump', I meant a gym's business office or a
> locker, not necessarily your own pocket! You could be off shopping or having
> a coffee nearby if you could be confident that Sasha's long-acting insulin
> wasn't doing her wrong. I have been leaving my pump in gym lockers for 7
> years and never had a problem; as long as a locker is locked very few
> theives would risk being caught stealing. They'd have to break the locker
> forcibly, which would probably attract attention.

 There are no lockers where Sasha does gym its held in the gym at a local
school. Cheltenham is very
 poorly funded for thing like this and none of the Gym club actually have their
own premises. However
 they take the valuables into the gym with them. The problem is still getting a
pump. What to do with it
later if she takes it off it a minor problem at present.

> You haven't indicated that Sasha has trouble communicating (autism,
> developmental difficulties, etc.). Most children over age 8 that I've
> encountered are able to express an opinion about their well-being: 'I don't
> feel so good', for example. On a pump, I would think the first rule of thumb
> for gym would be to test if she feels funny, second to test every 30 mins.
> even if she feels all right. If Sasha is able to read a watch or a clock,
> you and Sasha could agree that she should test her bg every 30 minutes
> during the gym session (once 30 minutes before, once right as it starts,
> then every thirty minutes during, once when it's finished and once 30
> minutes later). You, Sasha, and Sasha's DSN would be able to create a
> protocol such as, 'If bg is over 10, reconnect the pump for a minute and
> bolus 1 u. [depending upon Sasha's insulin sensitivity, which will be gauged
> when she is no longer on different sorts of insulin] but wait until after 2
> more tests to decide to take another unit', to allow the Humalog to peak
> before more hits her system.

 I think that Sasha would be able to do this most of the time but after the last
severe hypo when she had
 convulsions she didn't have time to feel funny just when into the hypo. I was
with her moments before
 and didn't notice anything wrong. But I would still be happy to go along to
watch at gym and just be
 there if she needs anything. I am sure that when she is older she will be able
to cope on her own.

> I'm surprised to hear you say you don't think think Sasha's consultant has
> meant to be difficult. The amount of frustration with him that you have
> shared has led me to believe that he is single-handedly destroying not only
> Sasha's quality of life but yours as well. Your only priority in life must
> be Sasha's diabetes control, not anything to do with your other children,
> your own hobbies, or anything else. You can never be 'busy' or go out to
> dinner with your husband, from the amount of time it sounds you spend
> managing Sasha's blood sugars. Other people would be requesting respite care
> by now, but you can't be sure a respite carer would keep Sasha conscious for
> 3 hours.

 When I said that I don't think that the consultant means to be difficult, it is
because I assume that
 people such as doctors and nurses actually want to do their best for their
patients and joined the
 medical profession to do this. So I can only assume that he feels out of his
depth as regards to insulin
 pumps and is scared because he needs his skills updating. Or maybe short of
time or genuine believes they
 are dangerous. He's still trotting out things from the incidents with the first
pump trials.

 If you think Sasha's consultant is difficult what about this!! There is a
consultant in Bristol who has
 "inherited" a child from the US who is an insulin pump user. I have been told
that this doctor is doing
 his best to have the child taken off the pump as he does not support pumps.
This is one of the
 consultants that Sasha's consultant told me was very good and wanted to refer
us to. I turned this down
 before I had even heard about the child and the insulin pump. I have told him
that I would like a
 referral to a hospital that has children on pumps. Its finding the hospital
that will help us that's the


> If Sasha can't take care of herself, without an adult's help (except maybe a
> phone call or two), for 10 hours (say, going to school, going home with a
> friend and having dinner, after which she would go home for the night), the
> building blocks of self-confidence that she'll need to have her own room at
> university in 10 years or have her own flat someday aren't being laid.
> Within a couple of years--say, by age 12--if she can't ever predict when she
> will go unconscious she could become hypophobic, intentionally keeping her
> blood sugars at 10 just in order not to go low. Repeated severe hypos
> requiring Glucagon cause measurable *brain damage*. All that and Sasha's
> doctor seems unconcerned about her well-being. The Hippocratic oath says,
> 'First do no harm'. The events and situations you've described over the past
> year+ indicate to me that Sasha's consultant is putting her life at risk
> every day...or am I missing something here?
> Melissa
> Type 1 10+ years; MiniMed pumper 7+ years
> Co-ordinator, Oxford University Student Union Diabetes Network
> Oxford area contact, INPUT
> _________________________________________________________________
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