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Pumping, how soon?
- Thread starter twisty
- Start Date
Hi
We're waiting for a pump so I can't directly answer the pump questions! My friend's little girl went on a pump when she was 5(diagnosed aged 18 months, she's 7 now) and her levels have improved dramatically. She's a very picky eater so the flexibility of the pump was a big help.
Are you keeping a food diary and comparing it to the high readings? Some foods cause much higher readings than others and its worth finding out what affects your daughter. Because we're on a different insulin from you we carb count but I have a feeling you've been told not to?
Highs are dangerous when you have days and weeks of continuous highs so try not to worry too much. Keep an eye on her ketone levels.
I remember how awful it all was in the beginining but it does settle down, I promise!
Go back to your diabetes team every time you're worried and get support and advice from them too.
Annette
We're waiting for a pump so I can't directly answer the pump questions! My friend's little girl went on a pump when she was 5(diagnosed aged 18 months, she's 7 now) and her levels have improved dramatically. She's a very picky eater so the flexibility of the pump was a big help.
Are you keeping a food diary and comparing it to the high readings? Some foods cause much higher readings than others and its worth finding out what affects your daughter. Because we're on a different insulin from you we carb count but I have a feeling you've been told not to?
Highs are dangerous when you have days and weeks of continuous highs so try not to worry too much. Keep an eye on her ketone levels.
I remember how awful it all was in the beginining but it does settle down, I promise!
Go back to your diabetes team every time you're worried and get support and advice from them too.
Annette
Hazza
Well-Known Member
- Messages
- 169
- Location
- Huddersfield
We started pumping 6 months after diagnosis but then out area Diabetes team are very pro pumps and do try to get as many kids on them as soon as they have mastered the basics. Lilys levels were quite eratic at times but we managed to keep them under controll mostly. Since she has been on the pump (Dec 2nd) we have seen a huge leveling off and she stays mostly between 4 and 8 so we are very pleased. It is hard work to begin with but very rewarding. We even had a BG of 32 once, just after starting the pump but a change of cannula soon sorted that out and we have been fairly consistent since then.
Have a word with your Diabetes team and ask them about going on a pump, there may be a waiting list but it is worth it.
Harry
Have a word with your Diabetes team and ask them about going on a pump, there may be a waiting list but it is worth it.
Harry
Hi
My daughter was 3 & a half when diagnosed. We battled through that first year with ‘ok’ levels, then a year in and we lost all control of her levels. Highs, lows and whatever we did we could not keep them steady. We moved onto MDI and this gave us better control but still it wasn’t great. We had many sleepless nights and I was a wreck. We decided we wanted her on the pump and so then commenced a battle with the NHS to get her one. She went on her pump last August at the age of 5 and wow what a change! Her life and our lives are so much nearer to ‘normal’ now. Her levels are mostly excellent. Her HBA1c has come right down and the flexibility and normality that the pump has given us all is great. We do still have the occasional unexpected high or low but with the pump we have found that correcting this and getting her back on track is so much easier and quicker. The pump isn’t a miracle though - YOU can turn it into a bit of a miracle as long as you put a lot of work and effort into learning how the pump works and how your child’s levels change in different situations. I hope you see what I’m saying? I wouldn’t want you to think that it’s an easy answer. It’s really hard work in the early stages but SO SO worth it.
Good luck with everything
X
My daughter was 3 & a half when diagnosed. We battled through that first year with ‘ok’ levels, then a year in and we lost all control of her levels. Highs, lows and whatever we did we could not keep them steady. We moved onto MDI and this gave us better control but still it wasn’t great. We had many sleepless nights and I was a wreck. We decided we wanted her on the pump and so then commenced a battle with the NHS to get her one. She went on her pump last August at the age of 5 and wow what a change! Her life and our lives are so much nearer to ‘normal’ now. Her levels are mostly excellent. Her HBA1c has come right down and the flexibility and normality that the pump has given us all is great. We do still have the occasional unexpected high or low but with the pump we have found that correcting this and getting her back on track is so much easier and quicker. The pump isn’t a miracle though - YOU can turn it into a bit of a miracle as long as you put a lot of work and effort into learning how the pump works and how your child’s levels change in different situations. I hope you see what I’m saying? I wouldn’t want you to think that it’s an easy answer. It’s really hard work in the early stages but SO SO worth it.
Good luck with everything
X
To answer your questions:
We started pumping on 12th January this year, my daughter is 9.
BS were fairly stable during the day but difficult to get good control overnight (lows at 2am and highs by the next morning). Daytime by comparison was good but still not ideal.
My daughter was diagnosed age 4 so that makes it just a little over 5 years since diagnosis.
Obviously she was well out of honeymoon before she started on the pump.
We tried different regimes and insulins before being recommended for a pump. Twice daily injections with Novomix 30, A combination of Novomix 30 and Novorapid, Mixtard 10 with Novorapid, Mixtard 10 with Novorapid and Novomix 30, and lastly basal bolus with Levemir and Novorapid. It was only when I saw a different consultant and clinic for a second opinion that the pump was suggested and recommended. I did a lot of homework about diabetes in general and the pump before I requested the second opinion through my GP.
I believe you have a better chance of getting a pump if you can prove you have a good understanding of diabetes, pumps and definitely carb counting. Even if you don't need to do carb counting now with your daughter's insulin regime I strongly recommend that you do it anyway. If you can demonstrate you know how to carb count that's one step closer to understanding the pump. If you get the pump you'll need to know it anyway. Because your daughter is still in the honeymood phase it doesn't mean she can't use a pump. It may well be that your clinic wants to get past this phase first to see if her BG will settle and you can get some sort of injecting regime to work. I feel knowledge is a good tool in your quest for getting a pump, know as much as you can about diabetes, insulin, pumps etc.
I absolutely agree with Vikki, the pump isn't an easy option, don't think getting the pump will be easy and make everything right. You will still get highs and lows and you'll still have a lot of work ahead of you to get it working to it's best. If your daughter is in the honeymoon period it's still going to be difficult. But I do believe you have a better chance with a pump IF you are prepared to put in the hard work and learn as much as you can about how it works so that you get the best out of it. Good luck, it's not always easy to get a pump but I believe it will be well worth it if you can get one. I would never want my daughter to be without a pump now that I know how well it works for her.
If you haven't already found the website called INPUT have a look (input.me.uk), you may find some of the info in there useful.
We started pumping on 12th January this year, my daughter is 9.
BS were fairly stable during the day but difficult to get good control overnight (lows at 2am and highs by the next morning). Daytime by comparison was good but still not ideal.
My daughter was diagnosed age 4 so that makes it just a little over 5 years since diagnosis.
Obviously she was well out of honeymoon before she started on the pump.
We tried different regimes and insulins before being recommended for a pump. Twice daily injections with Novomix 30, A combination of Novomix 30 and Novorapid, Mixtard 10 with Novorapid, Mixtard 10 with Novorapid and Novomix 30, and lastly basal bolus with Levemir and Novorapid. It was only when I saw a different consultant and clinic for a second opinion that the pump was suggested and recommended. I did a lot of homework about diabetes in general and the pump before I requested the second opinion through my GP.
I believe you have a better chance of getting a pump if you can prove you have a good understanding of diabetes, pumps and definitely carb counting. Even if you don't need to do carb counting now with your daughter's insulin regime I strongly recommend that you do it anyway. If you can demonstrate you know how to carb count that's one step closer to understanding the pump. If you get the pump you'll need to know it anyway. Because your daughter is still in the honeymood phase it doesn't mean she can't use a pump. It may well be that your clinic wants to get past this phase first to see if her BG will settle and you can get some sort of injecting regime to work. I feel knowledge is a good tool in your quest for getting a pump, know as much as you can about diabetes, insulin, pumps etc.
I absolutely agree with Vikki, the pump isn't an easy option, don't think getting the pump will be easy and make everything right. You will still get highs and lows and you'll still have a lot of work ahead of you to get it working to it's best. If your daughter is in the honeymoon period it's still going to be difficult. But I do believe you have a better chance with a pump IF you are prepared to put in the hard work and learn as much as you can about how it works so that you get the best out of it. Good luck, it's not always easy to get a pump but I believe it will be well worth it if you can get one. I would never want my daughter to be without a pump now that I know how well it works for her.
If you haven't already found the website called INPUT have a look (input.me.uk), you may find some of the info in there useful.
hi
dylan is 8 and was diagnosed age 4 we battled for 4 years with different insulins with nothing working, his hba1c was always over 10 with big swings going from low to high and back again.
we have been on the pump a few weeks after a year of fighting to get it and already its making a difference, as stated in previous posts it isnt an easy option but if u are prepared to work hard it is totally worth it, we love it already and if they tried to take it away i would hold on crying my eyes out lol, dylan loves the freedom he feels which sounds silly being attached to something 24 7 but no injections gives him freedom
if u want a pump fight for it and dont take no for an answer if u dont already carb count learn it was one stipulation my hospital insisted on before being considered so i was enrolled on a choice course (child version of dafne) and from there it was simple.
good luck
anna marie
dylan is 8 and was diagnosed age 4 we battled for 4 years with different insulins with nothing working, his hba1c was always over 10 with big swings going from low to high and back again.
we have been on the pump a few weeks after a year of fighting to get it and already its making a difference, as stated in previous posts it isnt an easy option but if u are prepared to work hard it is totally worth it, we love it already and if they tried to take it away i would hold on crying my eyes out lol, dylan loves the freedom he feels which sounds silly being attached to something 24 7 but no injections gives him freedom
if u want a pump fight for it and dont take no for an answer if u dont already carb count learn it was one stipulation my hospital insisted on before being considered so i was enrolled on a choice course (child version of dafne) and from there it was simple.
good luck
anna marie
