The Pumpers Thread!

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Adrienne said:
Then what is the basal rate before the 0600. It is that one that may need to go down to stop the 7.30 am crash. You may need to decrease the one before that to sort 7.30 am out and increase the 6 am to sort the spike out.

Bloody diabetes, pain in butt eh !
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Ah but here lies another problem, overnight, we've been testing at 2am and 5am and 7.30am and she's stable. Completely. Hasn't deviated much, maybe 0.5mmol/l, that's it. So, it makes me loathe to touch anything before as it seems to be working - argh!

You're right, nothing is easy with diabetes, grr!!!

Thanks for the help 🙂
 
Confess I feel mightily relieved reading everyone else's minute tweakings to get on top of x or y...Not just me! So important, but often just *perplexing* as all get out. Good luck with it all Becca.

Bev, what fab numbers! You are doing so well! You must be so delighted. It *is* hard work, isn't it? But I'm hopeful for you that A will stabilise (unlike E, who hasn't really stood still now since the very early days, alas) for a while so you can enjoy it all. (Get that bike ride in -- Tuesday morning?!)

Mand: you've given me an idea re pjs. I've had the same draggy ones for years, and as we're getting up so much, they are getting a lot of use (instead of nighties, that is). Time for some new ones! And I remember months ago, the pedicure -- envious of this. I have dancer's feet, quite like the idea of it, but am too embarrassed!

Delighted about the shopping and the McD's: all this helps normality. Well done. How are your nights going now you are not getting up? Okay?

This end we have good news and slightly confusing news: great news is that yesterday was the other half of the shared care clinic day (eg the home clinic) -- and E's HbA1c has gone down to 6.8%! Hurray, hurray! This is the first one all on the pump, and the one with the holiday, the adjustment to vacation, lots of weird growth numbers and not a stupid number of hypos. We are thrilled for him, but more to the point he is completely chuffed, and was boogy-ing around the kitchen last night doing a 6.8% rap...This kind of result I know makes him feel he can carry on. The only reason he keeps going really is because from the beginning he has been completely set on good control. His most disturbed and upset times come from his worries over his future. So his relief at making headway is palpable.

Now to the argh news: he had another day of slightly high numbers, eg 9s, 10s, 11s, and then last night was 17! So seeing as that was the second day, we are now coming to the conclusion this is another spurt, not just a coupla weird numbers...Thing is he starts school on Monday, and we are thinking we are going to have to re-design everything anyway, go back to the school pattern and adjust...who knows what will happen? Annoying!

However, ANOTHER piece of good news is that our nighttime corrections seem to be working well. I'm still convinced he needs one at like 1unit: 4.5 mmols (rather than 1:4), but hey. Anyway, for this 17mmols at bedtime we for the first time that time of day fully corrected (it was so high that our experience says if we didn't it down fast it would stay there a while due to resistance). Exactly two hours later we had managed to stay up (12.40am!): 11mmols. He had a lot of room therefore to drop (and knew he would, a bit, because he doesn't seem to really peak until 2.5 hours after a bolus AND his higher basal had only just come in at 12am) if needs be, so we left him and actually got SOME SLEEP. At 7am he was a glorious 6.1, when the target is 7mmols. So again, that's all good.

Becca: what's your business venture? How about by Tuesday make some decisions about the first/next step?!

Adrienne: what are you going to do for yourself? You slog your guts out. Take a break.

For now!

xxoo p
 
Woooooooooohooooooooooooo!

Brilliant hba1c E!!!!!!!!!!!!!Well done to you and of course to your parents for the tiny bit of input they have been giving! lol.:D

You must be so happy all of you - this is a number i dream of. A was 9.6 back in May - then the day he started on the pump he was 9.1 - so we are hoping that this will improve dramatically on his pump!🙂 I have to say the May hba1c - we were struggling with morning highs and it took us 2 months nearly to get him down to a nice 7 on waking...he is so insulin sensitive that any tiny change makes a huge difference....mdi was just so hard and unpredictable....

Anyway, isnt it lovely when they wake on a good number?This morning A woke on 6mmols and he had been fairly steady all night (apart from a 4.9 at midnight which we gave him a biscuit and milk for) - it does give you a lovely start to the day.🙂

I am worried about the morning basals. A is 7 or 8 two hours after breakfast - brilliant - but he is having a cereal bar and then he is still only 7 or 8 at lunch time - so my question is : should i lower his basal for the period between 10 to 12 so he doenst *need* the cereal bar? We havent actually left him without the cereal bar (only 2 days atschool) - so not sure if he would actually hypo - but i think he worries that he may and as its a new school etc - i think he is being ultra careful. I think we havent got used to the idea that on a pump you cna stay fairly stable at the same level for hours...

Patricia, yes i will try to go on a bike ride next week - i need to! You *must* go for a pedicure - i am sure your feet are fine and if not i am sure they have seen worse!It will make you happy and you deserve some of that!

Mand great news about the mac! Hope you enjoyed wearing your pj's!

Lou - where are you? Hope your ok and tackling your high levels? Bev x

Hope everyone else is ok. Bev
 
bev said:
I am worried about the morning basals. A is 7 or 8 two hours after breakfast - brilliant - but he is having a cereal bar and then he is still only 7 or 8 at lunch time - so my question is : should i lower his basal for the period between 10 to 12 so he doenst *need* the cereal bar? We havent actually left him without the cereal bar (only 2 days atschool) - so not sure if he would actually hypo - but i think he worries that he may and as its a new school etc - i think he is being ultra careful. I think we havent got used to the idea that on a pump you cna stay fairly stable at the same level for hours...
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Hi Bev

You are right and that A shouldn't need to have a cereal bar mid morning. If you want to sort out a 12 noon drop you look at 2 hours before so again you are right and maybe need to put in a lower basal at 9.30am or 10 am until 12 noon. You can but try these things. If it doesn't work, try something else.

Jessica is on a 0.85 at 5 am for her mid morning spike but at 9.30 am she drops down to 0.10 as she would also be hypo by 11.30/12 noon.
 
Patricia said:
Adrienne: what are you going to do for yourself? You slog your guts out. Take a break.

For now!

xxoo p
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Great HbA1c Patricia.

As for me what do I do for me? Umm gotta think here. I treat myself to the chiropodist every 3 weeks, she is now my friend ! I started get hair dyed two colours again but ever 10 weeks as it is not cheap ! Apart from that my aim in life appears to be fighting for our type 1 kiddies. I am part of the UK Children with Diabetes Advocacy Group. I have a meeting with the Head of the Paediatrics at the PCT in two weeks. They need a rocket. I think we have decided the care where I live is one of the worst in the UK (seriously it is) Luckily we go to London so it doesn't affect Jessica. I have spoken in two schools re diabetes and think I may have to go to another in the not to distant future. I run a charity www.hi-fund.org which is Jessica's real condition. I work from home (would rather not work but needs must).

I desparately need to lose weight big time but that is the only part of my life that is not controlled and I think that seems to be my release, it is a problem though.

But apart from all that I'm very happy. I'm single and I love it. I have no-one else, except Jessica, that I need to think about, we do what we want to whenever we want to.

Oh and its on the cards for me to be a qualified pump trainer. I would be doing it for the London hospital which means that more people in my area could be under the London hospital but I could do the training locally which would be better and mean better lives for more kids. This is in the pipeline and with the hospital's legal team to iron out the nitty gritty bits. I can't wait.

I don't have time for anything else 🙂
 
Hi everyone. Great to read all your updates!

Patricia - Fab news re E's hba1c! Well done to all of you! Makes all the effort worthwhile! Keep tweaking those numbers! I have booked my pedicure for next Friday! Can't wait! I can assure you that i do not have pretty feet so don't be shy - go book yourself one! You will feel like you are walking on air for days afterwards!

My new pj's are real cosy - especially at 3am this morning!!! We not night testing generally till next week but if i happen to wake (as i have done last couple of nights then i check him anyway). I not a good sleeper generally anyway.

We had a good set change this morning (phew - what a relief) and numbers been good since.

Bev- glad it all going well in general. A really interesting post.

Adrienne - good news re pump trainer! Hope you manage to fit in a treat at sometime.

Well, we all certainly seem to be in better spirits which is good news!

Hugs to you all. Mand x 🙂
 
Great to hear all your good news my friends! What a great HbA1c Patricia - I soooo understand how he feels and how good news can make you so much more confident and far less fearful of the future - long may it continue, and may all you brilliant parents be rewarded with fantastic numbers for all your hard work! And I'm up to 91% on my JDRF target with several weeks left to go - that's practically enough for a cure, surely? Well, maybe not quite, but your generosity means we will be a little bit closer.🙂
 
Thanks Northener! So you nearly there! hope you make 100% soon. A Cure? Oh that would be heaven! But in the meantime thanks for what you are doing! How's the injury? I hope you well on the mend! 🙂
 
Thanks for lovely words all -- so glad to hear from everyone. Except Lou: are you okay?

Everyone's plans for 'good things' sound fab. And good that today at least there are some good numbers floating around! This end we did 125% temp basal because he rose AGAIN but then at lunch mildly hypo so took it off...Been better this afternoon. Clearly will need to tackle it, but today was clean out the shed day, and it was horrendous -- spiders as big as your hand. Dire. The children were very good, but it was yucky...so that's enough hard work for one day...

Adrienne, all sounds so good for you. Glad to hear about chiropodist and hair! All deserved. Re losing weight: you mention this quite a lot. I'm wondering if you've reached the point where feeling bad about it is outweighing the feeling that you don't have time to do anything about it right now? You really could do without beating yourself up about it... What would be your first gentle (and not time-consuming!) step?

Really excellent news about pump trainer. Really, really good. So appreciate that you are there, and people like you. Truly.

I am feeling 'loved up' at the moment about this forum and support in general. I'm not a clubby person -- AT ALL -- but as time has gone on I realise how thoroughly I value your advice and support. It makes literally ALL the difference. So thank you.

xxoo p
 
Patricia

I always talk too much about my weight. I get told off by one lady. I always feel I have to say something before anyone else does but why would they and anyway you guys can't see me !!! Bizzare. I reached the point of feeling bad about it a long time ago but something is stopping me. I seen numerous counsellors about it. Next stop gastric band but I won't. That won't cure my head and who would look after Jessica and supposing it went wrong so its down to me.

We both need to do more exercise so after the weekend we are supposed to be getting walking (which I hate but hoping to learn to enjoy). Thanks for your concern.
 
Hi girls!

I am here, dont worry! (I saw a reference earlier incase that sounds big headed!). I am also slowly crawling my way out of my pit of doom which I have been in for the last week so I will join you for the reprieve of good spirits! (not a 100%, but getting there...).

Bev, going back a few pages now but I was blown away by your numbers there.....staggering. Like you say, needs a tweek and here and there but I think thats always the case. Great news though Bev, well done to you both. Quite possibly you never received the same support as some of us so I think with these numbers you have got off to a great start. Glad you took yourself off to A&E as well and I hope your symptoms get better.

Patricia! You are a writer! I thought as much- but I am kicking myself for not suggesting it as I would have loved to done the I GUESSED IT now! I definately would like to read whatever it is you are producing on all this! Great HbA1c too, takes a huge effort so I hope you will take some credit too.

My numbers are getting back on track abit in the last 24-48 hours...I am basilling enough for all of us at the moment. I think with my new job I am having to rethink the whole basal situation completely....I was a hamster running in a wheel in my last job and I supose having given it some thought I shouldnt be at all suprised that in prison no-one can RUN- even me! (I shall need to keep a real eye on the effect this will have not only on my sugars, but also on my weight). I have a tendancy to put it on abit. I am predicting my right bicep for a start, my keys are really heavy 😉

So I found out this week I have time allocated in the new role (all of the healthcare service sector where I have started is being revamped) to develop different chronic disease nurse led clinics, so I am bagging diabetes! I was willing to fight tooth and nail for it! I think I could make it really good but there is so much to think about. Also I am going to need to get an awful lot of people on my side as well as the boys themselves so we'll see. But I feel great about this...now all I need is to work out how to go to the toilet at work without weeing on my chain and keys 😉 too much info??:D (just checking you are still reading 😉)

Can I ask the medtronic lot (I think that is most of us hey?!) have you had any problem getting skins? (the plastic pattern covers for the pumps). Medtronic dont let the consummer purchase them, even on your personal account (which I have set up), they insist on sending them to your DSN and he/she gives them out. Well my DSN hasnt been issued with them for the VEO which is really irritating. I even wrote to Medtronic (a hobby of mine) asking them to send some to my DSN! But alas, no reply.... It wouldnt bother me to pay for them- but you cant!

Anyway, enough rambles.....!

Love to all xxxxxx
 
It will be great if you get the diabetes gig Lou! I remember reading somewhere a while ago a letter from a prisoner (maybe in Balance?) saying how it's very difficult for Type 2s to keep good control in prison as they aren't afforded the test strips etc. that are provided for Type 1s. Just thought I'd mention it!🙂
 
Yes I remember this N! Either in last issue of Balance or the one before. My plan is to use this letter somehow resourcefully as I found it rather interesting myself. Perhaps in a discussion group, generate a forum for the guys to give me info on their experiences of managing the disease in prison, before I can guide a productive clinic based on their needs. I have a lot of ideas, but I cant be too pushy or the boys will think they are being dictated to and wont respond.

I predict there will be some responses to that letter in the next issue so I am keeping an eye out! Thanks for letting me know anyway though-its always good to have extra eyes out for stuff! Hope your training is going well, havent checked out your blog this week but will do again v soon 🙂
 
Hello all!

Adrienne -- I'm always here for a place to lodge thoughts if you want. I imagine you have plenty of people in your large network, but just in case! Walking sounds a good start. Do you have an ipod? Confess that I can only STAND the very boring gym work etc if I listen to music or a podcast. This could be a retreat for you, some space? Gastric band sounds mega-drastic as you say, and if you know there's other stuff going on, I think you're wise to wait. Have you ever found a counsellor you click with? With everything you are dealing with day to day, you have to find someone who *really* understands: otherwise it's like you constantly know more than they do...

Bev: meant to say that with numbers anything LIKE you are getting at the moment, A's HbA1c is bound to keep getting better. I really think so. They are great numbers, with room for some higher ones too without a heart attack worry... I hope you're finding the pump flexible though; it's obviously helping so much with his sensitivity and highs etc...

Sugarbum: GREAT to hear from you! Sorry I didn't give you the chance to guess my profession...! I haven't yet figured out what this book is going to be, but I'm writing it. Think it important to just plough on for now. Suspect that interaction with others, such a the forum and the other email group, will somehow play a part. Coming to this kind of realisation of community has been rather major for me, and I think is major in being able to cope with diagnosis, maybe? anyway...

Very good news about your hopes for the new job. As I PM'd, I worked in prisons for about five years, and it remains the most satisfying and sometimes the most difficult stuff I've ever done. Don't let the turkeys get you down -- and I'm not talking about the inmates, I'm talking about the prison structure!

Re your numbers: sounds like you are getting more control -- but I'm sorry it's been a rough time. Hypo in Dorothy Perkins. Lordy.

Here yesterday was a better day generally for numbers though it seems a bit hazy, what with the spiders and all...Woke on good numbers this morning, but has since gone up a little, as before...Sigh. Setting up the school pattern tonight, so we'll see what tomorrow brings!
 
Hi all,
Just thought i would give you an update.

A now has 5 basals! How amazing is that?

12 midnight to 8am = 0.475 (for dawn phenomenon)
8am - 9.30 = 0.375
9.30 - 12.30 = 0.300
12.30-9.30pm = 0.375
9.30 - 12 midnight = 0.400

How does this compare to everyone elses?
We have been playing with temp basals too - mostly worked - but need to be a bit braver!😱

Just looked back on his levels over the past few days - he hasnt been above 12.2mmols ( i know this is still very high - but in comparison to what he was like on injections its low!) in 39 tests! This is amazing for A. On mdi he would regularly be up in the high teens after eating food!(keeping fingers crossed it stays this way).🙂

We are only doing half the stuff on the pump that is possible - we are still waiting for training on the bolus wizard etc - so i am feeling very upbeat about it all today! I will be very honest here and say that in the first couple of days - i thought we had made a terrible mistake - his levels were 20 and over sometimes and it felt like he had just been diagnosed and we didnt know a thing! But looking back it was because his basals were very out - and his ratios were too- so we didnt stand a chance really!

I must say - we havent had much help from our team - 2 phonecalls maybe - i made them! I dont think i could have coped without this forum and the other list i am on - so THANKYOU - and a huge THANKYOU to Adrienne - she stupidly gave me her phone number and i have used it! She always manages to keep me calm and think about things logically.

How is everyone else today?

Patricia, you will be pleased with me - i did something for *me* today!
I went to a car boot sale and bought a 1950's enamelled bread bin - its beautiful - but needed a bit of painting to cover a few rust marks. I have painted it and i am going to use it for A's set change things! I used to be very creative and today i enjoyed myself so much - i even forgot about diabetes for a couple of hours whilst painting! I didnt want his things to be in a 'medical box' type thingy - not because i want to hide it - just because i think it will make him feel better if things are blended in so to speak. It will look lovely in my kitchen.🙂

Bev x
 
Aw Bev that sound fantastic! You're doing so well and i think it's only natural to think have you done the right thing. I think we've all probably been there.

Rose's basals are:

0000 0.20
0600 0.45
0900 0.25
2000 0.50

There is a long gap from 0900 to 2000 that used to have other basals in but they've gone, probably come back when she starts school.

I did think about tinkering with the basals to increase to stop a 10am spike and adding one in between 0600 and 0900 as i had put in earlier posts but im glad i didn't! For the past two days she's been in the 3s around 10am - eek!

Well done on what you've done so far!
 
Morning all --

Bev I'm so pleased to hear about your painting experience...It doesn't take much, does it, to remind us of who we are...I have come around to feeling that we also owe it to our children to try to do something that keeps us in touch with ourselves...Although it's hard to do and justify sometimes I think. Hopefully the bread bin will be just the start for you.

I've done something slightly wacky that I hope was a good move: I've joined a choir! Ack. I used to sing in my teens -- loads -- and I've got good friends who for years have been saying on and off I should join their choir -- a small village one they run -- so this year I've thought hey, I'll do it. I can't even read music anymore, so am rather shaking in my boots... But it's a definite 'me' moment!

We're also thinking about getting chickens, but that's another story...

Our basals are:

2400: 0.80
0300: 0.75
0700: 0.75 (kept this even though same cos anticipate change for school)
1000: 0.40
1200: 0.70
1500: 0.45
1900: 0.70

Or something like that. This is the school pattern from memory...but seeing as this is the first day back, it's anybody's guess how it works out. We anticipate amalgamating some of them. Generally it's not far from what the holiday has been, but times are different... Ratios are 1:7 from 6.30am to 10:00 am; 1:11 until 12:00pm; 1:10 until 6pm; 1:9 until 10pm; then 1:11 until 6.30am.

I think. Something like that!

Numbers slightly weird again yesterday, but this seems par for course. A couple of hypos, not sure actual source... We tried rice for lunch for the first time in ages, 3 hour dual wave 30/70, and unfortunately the same sort of pattern of lows happened with this as happened last week when he was at friend's and had very little rice (and carb counted by sight)... We haven't really 'done' rice yet, but clearly this is a problem. On a three hour dual wave with rice, he seems to go low at 5hrs 15 mins or so, which is way after he would go low with a three hour pasta dual wave (4.5 hours there).

Any thoughts? What do others do with rice?

Nighttime basal still messing us about a bit, will probably have to lower again, argh. He's consistently dropping, and while that's dealable because we know it, it's not ideal. So he had 20g free carb on 5.2mmols before bed last night, and woke up on 8mmols. Clearly there's been some movement up and down!

Okay, for now. Fingers crossed he doesn't hypo all day on first day back!
 
Hi

Rice is another tricky b****r. We used to use 30/70 for three hours too as we found Jessica would go hypo immediately after eating it. But we then changed it to 30/70 over 2 hours which was better.

However we have gone back to the drawing board for everything now and started again. We are doing 50/50 2 hours for pasta and I will also do 50/50 for 2 hours for rice when we have it next. What rice and carbs do you use? We use Basmati (second best to brown and I hate brown rice) and we use 30 cho per 100 grams.
 
Thanks Adrienne -- that's exactly the carb we use: basmati, 30g CHO/100g. Can't stand brown rice either!

Am I right in thinking that if E is hypo-ing after the dw, at about the peak (theoretically) of the 'end' of the dw insulin, then there's too much going in over too long? Maybe we should try 50/50 too...

Such a shame that all these healthy foods are so hard to dose, grr...
 
Patricia said:
Thanks Adrienne -- that's exactly the carb we use: basmati, 30g CHO/100g. Can't stand brown rice either!

Am I right in thinking that if E is hypo-ing after the dw, at about the peak (theoretically) of the 'end' of the dw insulin, then there's too much going in over too long? Maybe we should try 50/50 too...

Such a shame that all these healthy foods are so hard to dose, grr...
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It looks like that. There are few things you could try. Firstly make it 30/70 over 2 hours and see what happens at the 5 hour mark. If that doesn't work then maybe try 40/60 for 3 hours and then 2 hours, if they fail then yes go back to 50/50 for 2 hours and start again.

If he is hypoing at 5 hours then it is what happened 2 hours earlier which is the problem, in theory so if the dual wave is finishing at hour 3 by making it hour 2 instead you could either eliminate the hypo or hypo could happen at hour 4 ! By trying the 40/60 over 2 or 3 hours not as much is going in over the period so that may well work.

Each child is very different and it is a question of trial and error unfortunately.
 
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