The Pumpers Thread!

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Morning everyone!

Becca, no A didnt fall or anything - he has also had another canula that has a spot of blood showing - so he is either prone to this - or he needs to try another canula. Will ring medtronic and ask for a variety!

Steph, of course you can post on this thread - sometimes it takes someone who isnt directly involved to see the bigger picture and tell us where we are going wrong! Thankyou for your kind words too.

Patricia, your right - we will encounter new experiences for the next few months - and i should just let it wash over me - its a learnng curve as they say!

Mand, I totaly empathise with you about your son getting upset. Poor little thing. We had the same thing happen on friday evening- decided to do a set change as blod in canula and he was 15mmols - but the dinner was cooking and i was on my own - it took me 4 goes at it - and for 3 of them the pump was saying NO DELIVERY - i even rang Adrienne as i was panicking - she calmed me down and told me to start all over again. It turns out i wasnt screwing the end of the tubing onto the resevoir properly - because i was panicking etc.. Poor A was crying his eyes out thinking the pump had broken and i was all of a dither! I felt so RUBBISH afterwards i couldnt stop hugging him - i felt so sorry for him and i just hope it hasnt frightened him about set changes.
I hope your son has recovered from the worry Mand?

Not sure about blisters - might be better to just leave them unless you have something sterile you can pop them with.😱

The nighttime testing has been very telling. A rises from about 10pm and keeps going until he wakes. Last night he was 12 at 12pm and then 17 at 3am and 15 at 7am - so we just corrected. I want to increase his nightime basal but dont know how much by. Whilst i do have the number for the consultant - i am reluctant to ring as i feel awkward doing so. I think i will increase the basal by a tiny amount tonight and see what affect it has. How many basals do you have Mand - and all pumpers?

Hope your all ok.🙂Bev
 
blisters

Another non-pumper's comments - sounds like that's acceptable?
Agree about not bursting blisters unless essential, but sometimes better to pop than allow to rip open eg on feet, although I know that's not what Mand meant. However, one advantage of diabetes is that I always have "clean not sterile" lancets or sterile fine pen needles to deal with any blisters on my feet or for anyone else. I guess that the blisters Mand is talking about are result of adhesive removal? With feet blisters, once I apply tape, I leave it on until it either drops off or I can soak off in a bath - which is usually required for muscle aches, too. Anyway, continual application of adhesive, as well as permanent connnection to a machine are among the reasons why I don't want a pump. But, for those who don't get adequate control with injections, they're great.
 
Hello all

So glad to hear from everyone, as usual!

In a rush though, so will return in detail to this tomorrow or later today... Mand, sorry about the blisters -- never had them. Could be the plasters as Copepod says. Have you tried that spray beforehand? We no longer use it because it doesn't seem to make much diff, but it might be worth it...

Bev, adjusting basal: we adjust by 0.05u/hr at a time, and this usually has a noticeable effect. Alex is on even lower basal increments, so I guess I would go for a very low incremental change first, then do the tests. So for instance if he's on .325u I guess I would go to .330 or something...He's very sensitive to insulin, yes? E is too, but is obviously a larger person overall so has more...See what Adrienne thinks?

I'm sorry about the horrible time with the set change. We've had this once, and it was horrific. I don't mind telling you that all of us ended up in tears, being strong til it was in, then just broke down when E went off to do something else. So much is at stake in this situation. It's dreadful.

Mand, it *is* the responsibility. We can let all manner of things go for ourselves, but not when it comes to our children. It's this brick wall of duty/obligation/love; there is no choice, and oddly, we don't want a choice. Except possibly for us to be able to take it all, and them carry nothing.

For now!

xxoo
 
Hi everyone,

I think we need a group hug??? I am abit emotional myself this morning and just checked my BM and it was 17mmols. I am still unhappy with my meter (mental note I am going to phone them after I have written this).

I have just read and got myself up to date and there has certainly been some things going on in the last few days. A lot of emotions.

You guys teach me so much about caring and courage its unbeliveable. You have no idea how much you enrich this experience. Diabetes can be hard but I have met so many lovely people along the way and you are all so strong you give me a lot of courage to get on with it. Sometimes I do think, "What would Patricia do"?, "What would Mand do?" and so on. Your posts are so good to read, I really am grateful for the support they give me. Enough of my emotional, high-sugared babble!

Going back to Tracey W a couple pages back, I completely understant your anxieties. I do have to say though I think there is little in words that can ease this until you actually get the pump and see for yourself as I think it is very individual. Sleeping took me 3 nights to master, and all-in-all that isnt bad. I bought a pile of cheap vest tops from New look at ?2.99 and clip it to my shoulder strap. Its not revlolutionary but works for me. Of course, sometimes i will roll on it and it wakes me up, but thats not a problem. You will find somewhere for it all times, when you get going on it there isnt much you cant conquor. I think these anxieties are so normal and healthy. This will be one of the biggest things going on in your life. As patricia highlighted, and I have heard many times too, it can take some people back like a NEW diagnosis. Its not had that effect on me but I think Ive had so many knocks lately I wasnt expecting it too. I have to say, (and Im sorry I do bang on about this one), but I think I was eased through the process so well by my excellent DSN that the "abandonment" feeling I had after my initial diagnosis (have some insulin etc and get on with it! Bye!) wasnt there with the pump. I was FULLY supported and this to me is the essence of working my way through a difficult process. Waiting so long didnt do me any harm either, despite my lack of patience getting me down. Time is great to consider the adjustment. Have you been on amazon and ordered the "Pumping demystified"? A small very easy read, but a MUST! I think it is a good prompt to get your support networks in place and get "in the zone"! not long now Trace, remember we are here. You are always welcome to PM me if you want to.

Aymes, I am very pleased you are thinking pump! I echo the advice of the before me, call John! Stay calm and concise and get your point accross. I dropped my hba1c after dafne and then ironaically the second I didnt meet the criteria was the second they acknowledged that and let me in anyway. Dafne research shows that the majority (I cant recall any stats) will drop their hba1c after the course. After one year that is when people generally plateau or climb back up in their hba1c result. So, If the pump is likely to benefit you then push for it, a1c shouldnt be a yes/no definative. I would advise you (although I know you are sensible anyway aymes!) to go in with an up to date glucose monitoring diary to show your hypos/swings. It also gives an insight that you have a certain amount of diligence to write them down and work at things- a pump critera that you are willing and able to make the effort and attend the education needed for pumping. Do keep us updated, I wish you luck!

Bev it sounds like you are going hell for leather and doing a sterling job! Well done. I am so pleased you are pumping and I hope it sontinues to go well. 2 days seems a short time to keep the set in but if that is what works best then I agree and go with it. The blistering I dont know about. I find the marks from removing the sets stay for a very long time. I change my set every three days and they dont heal for a long time. I often count the spots I am left with! At the moment there is 12, so thats a good months worth. Never had blisters but have been advised to watch out for abnormal things like that. My DSN tells me she has someone who is allergic to plastic and the adhesive dressing who has a unique cannula instead so even if A has sensitivity I would think there is something that could be done about it. (As I am writing this I am actually wondering it is was mand who wrote about blisters? Sorry if it was.....).

Patricia, I am competing in the sewing stakes.....I am going to do some this afternoon. On that note, I went to a wedding yesterday and worse a very fancy dress. I bought myself a garter off of ebay (?1.99) attatched it to a suspender belt (dont ask!) and it worked all evening. I even manged to tear up the dancefloor in a very unlady-like fashion and although it had a mind of its own at times, it stayed with me throughout. Huzzah. A little mark of sucess!

Right, time to clean this monterous mess up that I call my flat. Thats the shame of living alone, I have no-one to blame unless there has actually been a robbery???

catch you later xxx
 
Hi All .....

I'm sending you all big ((((((HUGS)))))) ... and to say I think you are all brilliant and amazing pumpers and pumper mum ..... :D:D

I have been popping on and reading how things are going with you all ... and must thank you for all the information and knowledge you are sharing with each other ... but also to us peeps who dont pump or only have a limited understanding of them.

Heidi
xx:D
 
Hi guys, reading everything with great interest - thank you for sharing your trials and tribulations, thoughts and successes with us!🙂
 
Lou you do make me laugh! Lordy. Heidi and Northerner, always good to see youse...

Aymes, to further support what Lou says -- I am certain that our commitment, and E's evident commitment to better numbers, that swung our shared care and pump approval. the hospital said they'd never seen a child so sure in what he wanted, and why. So they were behind us all the way. Your records will be very good evidence of this.

E keeps his sets in 3.5 days with no problems. This is mainly because we *knew* that every three days would go completely beyond our control. We have very busy, very erratic, outside of business hours lives, as do our children, and we knew we'd lose track of it all if we didn't make the changes the same times of the week. Every other day changing seems a bit rough Bev? I suspect it can get a bit better than that for him with another type of set...

Lou: tea tree oil cream? it works very well for us, and if anything, E's marks are healing faster and faster -- don't know why. Better control? Seems far-fetched, but maybe...

Okay, bye!
 
We have managed to leave his set for 3 days and it was ok. No blood in canula. I am wondering whether it was just beginners nerves etc? Will give it a few more days to see how other changes go.
How long does it take medtronic to send supplies? Just realised we only have 3 or 4 sets left and its bank holiday - so will have to ring them on tuesday morning.😱

Just had an odd 18mmols out of the blue - checked set fine - ketones 0.3 - lots of water. He last ate 4 hours before this - so not sure whats going on. Oh, as i am typing this i have just remembered that Adrienne told me that quite often children go high after a set change - which we did this lunchtime! Can you hear the cogs going round in my blonde brain?

Also we have increased his basals from 9pm to 8am to 0.400 - it was 0.375 - so hopefully this will have some impact - and we will keep at it until he is under 7mmols in the morning.🙂

I dont know why i feel like this - but - i feel an enormous amount of pressure to gain great levels - because we are pumping! Even more so than when on MDI - its as if i will feel even more of a failure if his levels are still erratic! Does anyone else feel this pressure?

Although i have to say that he isnt 'swinging' from high to low like he did on MDI. He has only had 3 hypos in 5 days - which to me seems ok as its all new to us. I will say that even though the night levels are too high - they remain absolutely constant - well they rise very gradually due to DP - but i mean from about 10pm they stay the same until the dreaded DP at 4am!

Hope all ok.:DBev
 
Hi Bev,

What happened to me was the hospital set up an account for me and then I was told by my DSN to call their number (Ive added them in on my friends and family!) and get my order in. This was the day after starting pump. I got the supplies the following lunchtime by courier, a good service. Three month supply. Told by medtronic woman to place my next order one month before running out. I would get straight on the phone Bev, get your order in!

Hope you ok. Remember they are 24 hours number etc.

I had that blood in the set thing one time. It really nerved me! But I never had it again. I did have a sharp pain that time and looking back I think I should have gone ahead and just changed the set anyway. My numbers went high. Well, you live and learn hey?!

Can I just mention Bev, I feel the same about pressure to get great levels. I dont have "great levels" now, I am 2 months pumping tomorrow. But they ARE better than what they were. I, as a person managing my diabetes better than before. Let us think of this as a marathon, not a sprint! We will get there eventually Bev (just dont get there before me!!!🙂)

Keep up the good work
L xx
 
Morning everyone!

Bev - My son recovered well, thank you, after the bad set change. But we have to change again today as we do it every two days and i know he will feel a little bit of anxiety. Hopefully all will go smoothly first time so it restores his confidence. Sorry to hear about your similar experience on Fri. Gosh, it does tug at those heart strings!
We have 5 basal's set at the moment. How many do you have?
Please do not feel pressure to do well on the pump. Maybe part of the pressure is caused by some of us saying we are doing well. But can i re-assure you that while my son's levels are hugely better they are not perfect. We rarely have a perfect day. But we have good days and much improved days. I do not think diabetes lends itself to 'perfect' levels. All you can do is your best. And Bev, you are definately doing your best so please take comfort and strength from that.
I ordered 6 months supply for the pump stuff and have freed up a kitchen cupboard for the stuff. I am keeping an eye on it and will (try!) to re-order in time! But it certainly bulky stuff if you short on space! I not tempted to order 12 months supply! xx

Copepod - Yes, I think you are right that the blisters were caused by adhesive removal. We left them alone and the next morning they had 'popped' or 'dispersed' by themselves. xx

Patricia - not tried the spray for before insertion. What is it called? I sent for the free sample of spray to use for removal and we do use that. I think we will see if it happens again and if it does then get some advice from his dsn. xx

Lou - as always, your post had me smiling! Hope your flat now spick and span! Thanks for the recommedation of Pumping Demystefied. Glad you have sorted out the pump and your sleeping. Also glad you danced lots at the wedding! xx

Tracey - As Lou said, anxiety about the pump is quite normal. I do hope you have success with it. I look forward to hearing all about how you get on. xx

Over and out! Love to you all. xxx
 
Hi all,
Mand - we just have 2 basals at the moment.

BUT - i have just sent him out on his bike with a TEMP BASAL of 70%. This is pure guesswork and i have no idea whether it will work or not - but you have to try somewhere dont you!😱🙂Bev
 
Good move Bev! Go for the temp basals! We have five basal rates for per 24 hours at the moment, but two different patterns -- one school, one holiday and weekend. They don't vary that much, just to take account of different eating times and waking times really...

Like Lou, the hospital gave us a number to ring along with all the product codes, and when we rang through we had already been registered etc so just ordered. We ordered four months (four boxes of each), and it took two days I think. Great service.

Name of spray Mand: Cavilon (barrier spray).

Still struggling with pasta! Argh! More later...

xxoo
 
Hi Bev

Just got back from a break and it sounds like you're doing really well 🙂 Brilliant that you're beginning to try the temps, i'd be lost without them 🙂

R has 5 basals in 24 hour period but i think i'm going to have to review them...Or wait till she's back at school. Her control has been awful over the summer holidays :( We had 2 weeks of swine flu coming and going....2 weeks holiday away....2 weeks of cold (how ill can one child be in two months!!!?!?!) and we're now here, back to school next week. Not sure if it's the things she's been doing or something else....

Was wondering about active insulin...How long is everyone's set for? R is 4 but i'm windering if it should be 3....
 
windering?!?!?! Teach me to type and not read before sending 🙂 Obviously meant wondering...
 
Hi Becca,
Thanks so much for your support - it really means a lot! I was wondering about the active insulin myself. I think A's is set at 4 - but i dont know how to check that? I asked ours dsn - but she didnt know.

When you do a temp basal - do you do it by %?

I took a guess and did 70% - and he was between 3.9 and 9 for the 2 hour bike ride - not great - but a lot better than when on MDI.

I have tried to give him pizza without a spike tonight. I gave him 60% up front and then 20% after an hour and then will give him the remainder in the last hour. So far he hasnt been above 8.9mmols - FOR A PIZZA!!!!!!!!!!!!!!!
We havent been taught how to dual wave or anything yet - so just experimenting myself!😱 Does this sound right to you Becca?

I hope poor little R starts to feel better soon - maybe being back at school will help sort out her levels!🙂Bev
 
I might email R's team and see what they think about the active insulin or get Pumping Insulin out and have a read 🙂 Do you mean check on the pump where the active insulin is or how to check if the active insulin is right? LOL! Sorry got confuddled 🙂

We do temp basals by % although i always check on the ESC key when i've set it to see if it's ok, sometimes i do a % and actually note the % is not varying from normal basal or is too much (depending on what basal it is) Does that make sense?!

Well done on the pizza and the bike ride 🙂 It's fab not having the spike and being in control of the levels to some extent, it's so trial and error though and just keep writitng all this down so you know what you did last time 🙂

I hope being back at school sorts R out although we'll have the obligatory stress; excitement and anxiousness of a new termfrom her (bless) which means 200% temp basals coming up....I see mid Sept before levels back to 'normal' argh!!!!
 
Patricia said:
At the moment we are testing at 7am and 9am regularly, trying to work out why he sometimes rises between these times, and sometimes falls.
Click to expand...

Hi

At the FFL (Friends for Life Conference) we have just been too, one of the things I learnt was that everyone (us non diabetics) have the dawn phenomenen as well but especially kids and teens - both diabetic and non. This means that levels will generally rise, just slightly, in the early hours and so this will sometime make the levels higher in the morning. I always thought this was just people with diabetes but nope its people without as well but it is more pronounced with diabetes. Hope that helps a bit. 🙂
 
Hi Becca,

I meant both! I dont know where to look on pump for active insulin - and i dont know how you work it out!😱

Also, what do you mean by 200%basal for school?🙂Bev
 
bev said:
The nighttime testing has been very telling. A rises from about 10pm and keeps going until he wakes. Last night he was 12 at 12pm and then 17 at 3am and 15 at 7am - so we just corrected. I want to increase his nightime basal but dont know how much by. Whilst i do have the number for the consultant - i am reluctant to ring as i feel awkward doing so. I think i will increase the basal by a tiny amount tonight and see what affect it has. How many basals do you have Mand - and all pumpers?

Hope your all ok.🙂Bev
Click to expand...

Hiya Bev

These are all of Jessica's basals for a school day (she has slightly different times in the morning for weekends and holidays due to getting up later).

Time insulin
0000 0.30
0200 0.25
0400 0.35
0500 0.85
0930 0.10
1300 0.55
1700 0.55
1930 0.45
2100 0.20


Just to run through those and the reasons behind them.

At about 3 am she dips a bit so we set a 0.25 at 2 am but then she shoots up so needs the 0.35. Jessica gets really really really high mid morning spikes, always has so the 0500 rate of 0.85 is the highest of the day to combat a spike at 10 am. It will no doubt need to go up by next week to 0.90. We reached 1 unit at one point but that had to come back down after a few weeks.

However with the 0.85 going in she hypoed by 11.15 or noon so 0930 at 0.10 seems to stop the hypo.

If you wonder why we have the 1700 in there as it is the same 0.55 as the 1300 it is because we have only just increased the 1300 from 0.45 and no doubt the 1700 will need increasing at some point so I've kept it there.

Jessica is not getting enough basal insulin at the moment across the board so please don't start comparing. The idea was just to show you how many basals she has and why. Some people have only 4 basals and that works for them.

Bev - only ever go up in small increments. I think you have the Veo so you can go up in even smaller ones ie 0.025 is that right? We only have 0.05 and I use that but sometimes even 0.025 would make a difference.
 
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