4 YEAR OLD GOT PUMP AND I HATE IT

juliebarrett

Member
Messages
6
hi i was looking for some info from other pump users as to how long it took for them to get right settings and insulin amounts sorted. my 4 year old daughter started pump on 1st May and the settings that were programmed made her constantly low now theyve changed it again and shes high and all over the place plus ketones r setting in quickly about 45 minutes after 1st high reading and a low reading. i cant see a way forward with this im so stressed as i havent slept from she went onto it as shes went high and low in her sleep. ive had to use novopen to get ketones down as her bg in 25 minutes went from a 7.2 till 30.6 set changed and still no diferent im at my wits end please comment with anything that u have maybe experienced the same
 

mrman

Well-Known Member
Messages
2,419
Type of diabetes
Type 1
Treatment type
Pump
Sorry to hear your having a bad time. I recently had the pump and took a few weeks to get sorted. Hard thing was getting the basal right. Only way to do it is fasting tests by eating at a set time and giving bolus with that meal, test 4 hours later, not eat for another 4 hours taking measurements every hour to see what the basal is doing. From the results you can make changes to basal. If a snack or correction is needed prior to the test don't do the test and try again the next day. This is the hard bit as if they are way off you will have to guess an adjustment to carry out the test next time. My advice would be to split the day into 4 and only do one four hour period at a time. Do not do on consecutive days.

Very hard to do all that I know, but, wk worth it once the basals are done. Then you can concentrate on getting bolus ratios correct.

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catw

Member
Messages
6
Hi we were in the same boat as you. My daughter now 3 got pump 6 months ago and it took ages to get setting ok. There are no perfect settings. Need to do fasting basal test and at night to get foundation right. Then just trial and error with carbohydrate ratios and correction factor. Read book think like a pancreas. Good luck. It does get easier.


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juliebarrett

Member
Messages
6
Thanks u for your comments I'm waiting on diabetic team and consultant having a meeting today. They have tried basals that r in between like 0.10 which floored her with hypos and reducing it to 0.75 which puts her high and ketones kick in within minutes I'm at my wits end my daughter hates wearing it and I have two other kids that r feeling the pressure of the pump as well from 1st May till yesterday I have done 220 finger pricks and from she's got it I've lost my daughter she's eating very little and not wanting to join in with the family I'll wait and c what the outcome of their meeting is. I'll give it two more wks or so and if no joy I'll hand it bk and go bk to injections.
 

scaramello

Newbie
Messages
1
Hi, I think a pump will make you go one way or another, what sort is it? My 13 yo son is on an omnipod. He went on it during february half term as the hospital said he would need at least 2 weeks off school to get used to it and getting the basal rates correct for him, and also due to the fasting. During those first few weeks he was all over the place, we were warned that highs and lows would happen more suddenly.
Although his PDM monitors and records all the data, I set up my own excel spread sheet, with colour coding and started plotting his figures every night. It was easier to see where a basal rate may need changing and I would make notes for most days. This has helped me and him so much. 3 months on and it is going fairly smoothly, there is far more work for me to do which I certainly don't begrudge, for him life is a lot easier.
We are going abroad next week which I am worried about as it is going to be hot so I will be setting up a 'holiday basal' programme with a bit less insulin, again, the holiday will be trial and error.
Stick with it for a bit longer, better to give it a proper go now, it may be the best thing you ever did! Good luck
 

donnellysdogs

Master
Messages
13,233
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People that can't listen to other people's opinions.
People that can't say sorry.
What pump have you got?

Certain pumps ( accuchek) can be downloaded at the hospital if the consultants have the software.. And it can then suggest a starting level for basals.

Have you got readings and carb counts and ratios for a day?

Would you be prepared to copy them to this? Generally speaking... Without bassl testing then if you are high or low 2-3 hours after food then the bolus needs to be altered.....but your daughter really doesnt need to be high or low or bolus for 5 hours before the 5 hour testing or overnight... So thats going to be really hard for you both. So initially, give us a days tests and eat times etc and we may be anle to jelp you get to a starting point for basal testing...

Dont give up just yet... Its very hard for youngsters and parents...
 

iHs

Well-Known Member
Messages
4,595
I didnt do any serious daytime basal rate testing for a fair few months. Instead I just altered my basal rates and my carb bolus ratios according to the advice DD's consultant gave her when she started pumping and then just staggered my eatimg times a bit to see how things were going and using my correction factor to get me back to some sort of normalish bg levels if they were too high and eat a bit of carb if I was going a bit low.

Using a pump is very hard work at times as its ability to control bg levels really does depend on getting the settings correct and that can only be done with any success by frequent bg testing and writing everything down. I use a pump bg monitoring diary and am able to write down my carb ratios, correction factor, hourly basal rates, carb eaten, bg tests. Mind boggling at times but writing data down on paper works fairly well and should guide you what to adjust
 

juliebarrett

Member
Messages
6
Hi everyone thank u for all ur helpful comments i uploaded my daughters data and sent it to her diabetic team so they have changed basals corrections and times so hopefully this will help i have been doing all the recording they have asked of us ive a meeting on wednesday so i dont no what thats about probably to give me a lecture about how much hard work it is and what the outcome of it will b stuff i already no. Yes it is very hard work at mo and i dont mind puttin it in i wouldnt set my alarm every 2 or 3 rs to check her if i wasnt willing to put the work in its her safety that i really worry about the ketones set in on saturday after 1 high reading and i had just tested her 40 mins before it scares me that this can happen so quick shes already been in coma thats how she was diagnosed ketoacidosis and i dony want to go back there again. Ill keep u all updated abput my meeting and how the changes have been. Many thanks to u all for your support its great to no that im not on my own