The 'New on Pump' thread!

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Hehehe! I can imagine that - often I only know I've injected when I can see the debris on the couch beside me! You've got me fancying a brie and grapse sandwich now! Or maybe brie and cranberry....slurp!🙂
 
Mmmm yummy yummy brie and grape, love it. Not had that for years.

🙂
 
Patricia said:
How long have you been diagnosed, Lorraine? As far as I can gather, gaining control is pretty awful early on for *everyone*, so don't feel bad.

If you've been diagnosed longer, it may be time for a change?

There are NICE guidelines (don't know what the letters stand for offhand, someone will!) about being eligible for a pump (not great control, or hypo unawareness, etc) but more and more these seem to be able to be worked around in any case. My son's control wasn't been desperately bad all in all on MDI -- but we were very motivated, as was he, to see improvements etc. We also struck lucky with consultants and our GP.

I'm sorry you're feeling down. Out of whack numbers aren't going to help physically or psychologically. Are you in touch with a decent diabetes team?
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Have been diagnosed 2 and half years and have had nothing but problems since day one. My care or lack of it is appalling and I just feel i am hitting my head against a wall. My GP's surgery has an inhouse diabetes clinic but I keep being asked to be referred to the hospital. Have had some great advice on here today and what a shame I didn't find this site 2 years ago. it was my boyfriend who found this site for me.
 
Northerner said:
Adrienne! Where have you been? Have missed you being around.🙂
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Hi

Went to Florida for a week to see my dad who lives there half the year, got back one week and then half term and off camping with the Single Parent Travel Club (www.sptc.org incase anyone is single and has kids 😉 ) then I've been ill, still don't feel right. I slept all last week and as a single parent with a daughter on a pump I still had to do the night testing and look after her but had a couple of friends take her to school and back for me so that helped.

Funnily enough I've missed you guys for some reason. 😉
 
Lorraine said:
Have been diagnosed 2 and half years and have had nothing but problems since day one. My care or lack of it is appalling and I just feel i am hitting my head against a wall. My GP's surgery has an inhouse diabetes clinic but I keep being asked to be referred to the hospital. Have had some great advice on here today and what a shame I didn't find this site 2 years ago. it was my boyfriend who found this site for me.
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Hi Lorraine

If I were you, I would ring around the hospitals that are accessible to you, don't just go for the one nearest, the care may be as bad. Try and find a hospital that offers pumps. You may not need or want one immediately but generally if a hospital offers pumps they are quite clued up in the world of diabetes and should offer a full service of tests and staff (in theory). It is always better to travel a little bit further just to get good people. You don't have to settle for the nearest one. If your GP refuses to refer you, make a complaint to the practice manager and if that fails write again but this time write to the PCT (Primary Care Trust) as well as the practice manager, saying you have lost all faith in your GP and quote some NICE guidelines at them so they realise you know what you are talking about.

You do not have to stay with your GP. Go get 'em. 🙂
 
Tis Cause We Are The Extended Family Now Adreinne :d:d
 
Ha ha ha so true.....
 
Patricia
Glad things still going well for you. It interesting what you said about E forgetting to bolus. When we first thought about my son having a pump, it was my main concern that he would forget to push the button! But with his control headed downhill during the past few months and him developing a needle phobia, we seriously considered one and now just cannot wait!

Lorraine
My son met the criteria for a pump because he developed a needle phobia which resulted in him becoming distressed each time he had to inject. Also he kept injecting into the same spots (too scared to move across a little) so developed lumps which did not help. Also his control not so good now that he out of his honeymoon period.

Adrienne
My son will be going on a pump on 7th July. What you have written in your recent post is invaluable to me. Thank you so much. I would love your support over the coming weeks if that ok?

Hi everyone! Hope you all doing ok. 🙂

Hi Sugarbum, bet you crossing the days off! We are!! 🙂

Hope you and Alex doing ok, Bev. 🙂
 
Hiya Mand

I'll be here. Been doing this 2 1/2 years and its amazing for different food does to you. You learn so much more on a pump. Plus I have my other friends in the background if I don't know stuff. Bev has it right, she uses both this group and the email group and gets benefits from both.

Take care
 
He he he - i am greedy like that!😛

Adrienne i am so glad your back on this forum - we have missed you! If Alex does go on a pump i know we will need you - and there are a few on here just about to pump - so hopefully you will stick around and become our pump expert -(along with Patricia and everyone else).😉

Hi Mand - hope your ok and counting down the days?:D

Lorraine, good idea to ask for you hba1c next time your at clinic, it will tell you how good your control has been and if its not what you want then you can start tweeking your insulin etc .. and we will all be around to help in any way we can!:DBev
 
Thanks Adrienne. 🙂

Yes Bev, ticking the days off the calender! 🙂

Could i just ask you both about the other site you talk about. How does it work? What can i expect if i join? What would it entail? 🙂🙂
 
Heavens, look what happens when I go to the gym -- such a flurry!

Adrienne, great to have you back. Yay! Thanks for all your help with the ins and outs of it all...I can see that we will need to become more sophisticated about so many different foods -- but ultimately it's so good! And this is because it means that the possibility of eating everything to little real detriment is possible -- such a relief, and much healthier in all ways. To my mind, anyway.

So much to respond to...Completely agree that both groups (email and this) are useful -- my only difficulty with the other is that I *just* can't figure out how to respond to them! It feels so clunky. And reading the digests does my head in....The information is *extremely* helpful, and it is full of good, close people (like you say, with t1 children only, etc, which is just such a boon)...But, although I'm on the list and get the digests, I can't figure out how to respond to a email thread -- bev says click on the side, and I think, what side?! Does each response go through to the overall ukmailing list address, is that it? And you just keep the thread title? Anyway, that's all I really meant by saying I prefer this one -- I can use it! But the two groups serve quite different purposes in different situations, which is as it should be.

Mand and Lorraine: I think you should investigate the email group, absolutely. Esp Lorraine at the moment, because there's real activism there for families in your position. It's extremely important that you get the help you need and deserve. The CWD group is full of parents who have pursued things and helped others to pursue them.

Phew! Bolus for brie and grape last night worked like a dream. Realised after he was asleep forgot to shift basal through night, so he did wake up a little lower than ideal -- 4.8, having been checked at 12am, on 7.4. Will shift it tonight and see what happens. Would rather than the night figure holds steadier...

I'm sure forgetting to bolus happens. BUT, the ability to correct at any time is there, so it's less of a disaster I think. Ah yes I've just remembered: for instance, yesterday afternoon E had 14g carb of biscuits, while playing xbox! This no doubt distracted him to the point where he forgot to bolus, and realised such at dinner two hours later. Given that this had happened, his pre-dinner reading wasn't dreadful -- 9 something. So of course the bolus wizard then corrects (incrementally and finely, that's the point) that and doses. And he ends up on 8 pre bedtime sandwich, 7.4 post sandwich...All good.

There is a sense that things don't go totally haywire like they did on MDI, that's the thing. Control always feels within reach, recoverable. So far anyway. Let's wait for illness, etc!

Adrienne, we have not yet begun to mess with basal percentages...but I can really see how this will prove useful. One thing at a time! So delighted with it all though...
 
Thanks Patricia. Will investigate. Good to read your latest post and to know all going well. Those numbers are just so fab! We rarely out of double figures these days. We think 10 is good! Roll on 7th July! 🙂
 
Patricia
You mentioned earlier about a book called Pumping Insulin. I looked on Amazon and they had several versions of it. Please could you describe your front cover (eg colour of it) so i can identify it at Amazon and order it. Thanks!!!!!:D:D
 
Hi Mand -- thanks! Pumping Insulin..the one we have is blue I think, by Walsh? But if I were you I'd get the most recent edition anyway, for UK market...

does that help? Not really! I'll try to remember to look at it when I get home...
 
Hi Mand and anyone else who is interested.

The other group is for children who have diabetes in any way shape or form. My daughter only has diabetes because her pancreas was removed at 4 weeks old so she was made a diabetic but diabetic all the same.

Take a look at the website we have written, new this year. www.childrenwithdiabetesuk.org It tells you all sort of things ie what to expect at school, how to apply for DLA etc etc. From the home page you can join the email group. You just need to fill in your email address and how you want the emails sent to you and send it. It is that easy. I take from Patricia's message that she has the daily digest, this is the hardest way to do it in my view and totally understand why she gets confused as to how and where to post things. I have individual emails coming through into my normal outlook express. I have set it up that I keep them in a separate folder from my other emails from other people (I can help you do this if you wanted me to). There are lots of emails though, lots and lots which is why some people choose daily digest. There are a few hundred members and there are your regular posters, me being one of them and Bev even more so than me now !! My thoughts are that if the email is not relevant to you just delete it, you don't need to read them all. I was away for the weekend and got back and had 300 odd emails just from the support group, I didn't bother to read any of them and deleted them all. Sometimes you have to, you can get bogged down by it. If you want to use the group just to ask your own questions and not follow anyone else that is fine too. You will generally get lots of answers. Someone will have been through your scenarios.

We now meet up once a year in the Cotswolds, whomever can make it, there were 38 families this year. It is not clicky, we do generally know each other well but it has built up over years. Bev got stuck in quite quickly but I think maybe it is because she knew me from here and was brave enough to join in and say hi to me. I'm happy for anyone to use me for that if it helps.

I love it and it is my lifeline. It was us that changed the Change4life wording. We have formed the UK Children with Diabetes Advocacy Group and are now known in the diabetes world and have quite a standing now. We have our own website and we work with JDRF a lot and DUK when they behave themselves and INPUT and hospitals and clinics around the UK. We are quite powerful but not powerful enough yet, none of us get paid for anything and we all have children with diabetes to look after first and foremost.

Anyway see what you think of the website and join up to see what is happening. Email me privately if you think I can help you.

It is different from here, so you can use both as a resource like Bev. This is a forum and that is an email group.

Hope that helps and explains it easily.
 
Thanks Patricia. I will wait to see what colour yours is then take another look at Amazon site. As you say, i should buy the latest edition really. 🙂

Adrienne
Thank you so very much for your long post telling me all about the other forum! I truly appreciate your help. I will take a look and let you know what i think. I really just do not know what i would do without this forum already and i am relatively new! Thank you again. 🙂🙂
 
Hello all

Interesting evening/night!

3 hour dual wave for pasta -- previously we thought *had* worked -- ended up at 6.4 ish with a half hour to go at bedtime. Then tested at 12midnight -- 3.9! Woke up for milk and some chocolate...3am: 13.4! Ouch! Decided not to correct to see what happened. This morning: 13.4.

One good thing: at least it's clear that the tiny adjustment made to the night basal has completely stabilised the readings. No drop from middle of night....

However. One of two things seems to have happened: miscalculation of pasta carb, OR something about the pasta spiked longer. Either one is perfectly possible: it was a complicated pasta, with sausage (high fat?) and some cheese on top, so hard to know how long it took to 'go through' and how much of his portion was actually pasta rather than gubbins!

Sigh. Not end of world. Correction this morning, and I'm sure all will be well later. Meanwhile we've also adjusted the late morning basal after two out of three days he was low between 10-11am -- but the other side of things is that the morning spike (between 9-11) is under control...so we need to be careful!

We've also slightly lowered the late afternoon basal, because once again two out of three days he's going a little too low just before dinner.

Things feeling a little complicated, but then I'm a bit hazy from lack of sleep, and worry in the night. As his father said at 3am, 'well 13mmols isn't great, but I was worried he might be at 1.3 after a midnight reading of 3.9'!

Quite. I dreamt about diabetes all night...

And of course it's all change tomorrow when we go to last weekend's basal pattern, which worked like a dream....Will it again?! Who knows....
 
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