worried about first night

[ams162]

feeling abit worried about our first night been testing regularly since 3 when dylan was connected and hes now gone to bed but i usually know he has to be above 10 to make it through the night now i have no idea and feeling abit daunted.

hes had a taekwondo session tonight too but i had to set a temp basal before as he was low heres his readings

3pm- 7.0
4pm- 5.8 had 35g carbs and 1.1 bolus
6pm- 8.4
7pm- 3.7 had 15g and set temp basal of 80% for 2 hrs
8pm- 8.2
9pm- 7.2

hoping ive done the right thing so far im still having to consider that there maybe some levimir in his system so dont know if this is a true picture yet

anna marie

 

[Hazza]

Hi Anna Marie, it sounds like you are doing fine. I wouldn't worry too much about the low earlier as he came out of it pretty quickly. I would test at around 11.00 as he has come down a point between 8 oclock and 9 oclock. You wil need to be reactive to his levels untill you get the basals right. Don't take tonights readings too seriously as there will be some insulin still working from the injections this morning. You just need to check regularly and correct according to the readings (or not if they are within range). We have found that Lily can go to bed with a reading of between 5 and 7 and be fine all night and get up the next day with readings of around 6. It takes a little while to get right but is so rewarding when you do. Don't try and change too much at once or you will loose track. The first few nights are really hard on you both, and you wont get much sleep but stay in there and you will benefit in the long run. I used to set a small alarm clock every 2 to 3 hours and sleep downstairs for about a week but once we were confident that she was pretty stable at night I just tested once at different times, unless she was high or low before bed then I might check a couple of times. You will soon get a feel for it. Don't panic and take it one step at a time, you're doing great so far.

Harry

 

[ams162]

hi harry and thanx for the support i feel like im starting out again :lol:

i tested him at 10 last night and he had dropped to 3.2 so i set atemp basal of 80% again to last the night and i know the DSN said to correct a low u dont need to give long acting but years of inbuilt keeping him above 10 for bed kicked in and i gave 15g fast actingto get him u and a couple of custard creams shouldnt of i know but was worried sick, tested at 11 and he was 6.8 woke at 2.30 and he was 14.9 my fault i know, hes woken this morning and hes 15.2 temp basal has now finished and his back to 0.3 ph and ive done a correction..

really nervous about him being at school today now and away from me altho i will see him at lunchtime gosh its all so scary im used to being confindent of my actions and how they affect his sugar levels really not liking the feeling but i know when we suss it it will be great, hoping today might be better with the insulin from injections worn out but we will see later

anna marie

 

[jopar]

You are right it will take a couple of days for his levimer to filter fully out the system... So at the moment you doing the right thing with rolling with his levels for the first couple of days, before looking at pining down basal settings etc...

Don't let it shake your confidence, as yes the theory is new and you've got to think about it a bit more, but you've got a good understanding of diabetes so you'll find picking it all up a lot easier and quicker than you did when Dylan was first dignosed...

I suggest a book which is know as a pumpers bible, 'Think LIke A Pancreas' by Jouhn Walsh it has very good information in it, easy to referance etc and underpining the pumping theory a must have in my opinion..

When you are testing to sort out basal rates, work on one period nights are general the best to get out of the way first, but bare in mind when you'll testing what he's been doing in the day as exercise for some sports can have a time lag effect.. For children whether they've it been raining and they had to stay in at break times or sunny and they've gone out to play can make a difference later one.. So it may mean that you've set the over night basal, work out the factors that deem a temp basal is require over night...

I would also have a word with clinic, see if the got a loan CGM which you can borrow at some point, this can make fine tuning a lot easier as you can see trends a lot better...

 

[ams162]

thanks jopar,

ive spoke to the DSN this morning and she has said im doing well and dont beat myself up over the biscuits, he shot up to 22.0 after breakfast but i tested ketones he had none so she said its just hes abit more insulin resistant in the morning but doesnt want to change anything too quick,, i retested before he left for school and had come down to 21.0 so was moving in the right direction i will see what he is at lunch.

im sure like carb counting it will become easier with time its just so new at the moment i need the reassurance sorry if im posting alot and u all get sick of hearing from me ill try to keep it down abit lol

anna marie

 

[Hazza]

Hi Anna Marie, don't be worried about the numbers just yet, you need to know how he is reacting to his basal rate so that you have a guide and can then determine wether to increase or decrease it.
Lily started on a very small basal and we quickly found that we needed to increase it. We needed to change the rates and have settled on a regimen that suits her now. Her rates change at different times of the day. All the books say to split your total daily dose 50/50 but Lily is probably on 30% basal and the rest as bolus as she likes to snack (don't all kids ). You have to use what works for Dylan.
Here are hers but Dylans will most probably be different.
Midnight to 6am 0.20, 6am to midday 0.16, midday to 5pm 0.20 and 5pm to midnight 0.26.
Be prepared to change things but as Jopar says take one period at a time. Most people will do the night time ones first as they are fasting (sleep). Once this is done you can relax a bit at night and get some sleep yourself. You can then do the morning, afternoon and evening basal tests when it is convenient, we found that it was best to do these at weekends as she was not at school and we couls control things easier. It will take time but you are doing great.
Keep it up.

Harry

 

[jopar]

I got John Walshes book wrong it's the Pumping Insulin is the one you want... sorry

But you doing fine as the DSN says don't beat yourself up, you get the hang of it all, and never worry about asking questions, asking etc is a good thing

 

[ams162]

thanx guys i appreciate the kind words of encouragement, i have just got back from school and he was 4.8 so wondering if the basal is too high hes come down an awful lot in a few hours did the bolus for his meal just hoping he doesnt hypo this afternoon now fingers crossed altho he is on a basal now of 0.25

anna marie

 

[Hazza]

Does his teacher know how to treat a hypo? and does Dylan recognise when he is feeling hypo? If you answer yes to these questions then I wouldn't worry as the teacher will deal with it and hopefully let you know so that you can log it down.
I wouldn't think about it too much as you have enough at the minute and the teaccher should be able to cope, if not you are at the end of a phone.
You will eventually get there just don't be in a hurry as it takes a bit of time and fine tuning.

Lily went to bed last night at half past eight and she was 4.8. A lot of people think that is too low but eventually you will get a feel for how they are, if she was ill or running a temperature she would need keeping an eye on but we know how she is and she tells us if she doesn't feel right.
When she got up at seven this morning her BG was 5.2. She may well have dropped a bit lower or gone up a bit overnight but we have tested at these times and she was always in range so we no longer worry ouselves sick.
You are doing all you can for now and need to get the info together to make proper adjustments, you are doing great.

Harry

 

[ams162]

hi harry
yes the teachers know how to treat a hypo i just dont like this just give 15g of fast acting to treat so used to quick acting followed by long acting carb it doesnt feel right but its all going to take some getting used to thats all i did the other for 4 years its habit.

he came out of school 2.8 but looked and felt fine so something is going to need a tweek somewhere i think sure its prob the basal will talk to nurse tonight and see what she says may need taking back to 0.2ph maybe. hes just been swimming too so will be interesting to see what difference that has .

its just the change we get used to something and its hard to break that habit i guess

loving not injecting tho :lol: :lol:

anna marie

 

[donnellysdogs]

Hi

Just a little thought...

Don't worry yourself frantic, like Harry says (very good advice Harry!) take it a step at a time.

You will find that night-times will settle very quickly in reality. It sounds as if you really have some excellent knowledge around the pump already with altering basals. If levels go as high as they spiked, then you could raise the temporary basal rate to drop levels a little quicker, but only be sure to do this if Dylan can be closely monitored, and if levels are above 15, then as soon as they lower bel0w 9, turn off the higher temporary basal rate to avoid crashing out. Like Lily, I too can go to bed on 6.0 and still be at 6.0 in the morning and at 3am when I have tested. It is only an odd occasion when this will not be right, but in my case I will wake up higher, rather than suffering low's like I used to. You will soon have mastered the night times, and you will both be able to sleep!!!!

The only other thing to watch out for is, if Dylan's levels raise or drop within 2-3 hours of eating food, then this may be down to the bolus/carb ratio being too high or too low, especially with any exercise....

Also makesure that you write as much detail in log books regarding exercise and food and reactions as possible, refering back does sometime come in handy.

You are doing fantastically, be so proud of yourselves. It is a totally different regime to get used to, and to be managing it so quickly you both really deserve to give yourselves a huge amount of credit and really, really proud. It is so wondeful to see Harry so comfortable with Lily and her pump too so very quickly. It is absolutely fantastic to read your postings from the pair of you, because you are so switched on to mastering it all. I just think it is so fantastic to read...despite the occasional plea of help-it is so great to read of the control that you both have achieved......Bl**dy brilliant!!!! Well done

 

[ams162]

thanku so much u just made me smile, i do feel drained today but its to be expected with little sleep and the worry of a new regime. i am trying my best and thats all i can do

i always write everything down in his books otherwise how can the specialist help u with no info, i have done 9 tests today already with all carbs written in boxes, food diary written along with meal boluses and correction boluses.

i do appreciate all the help everyone is giving its like being diagnosed all over again, we are pretty switched on with things and the DSN is always really impressed with what we have done but its always nice to ave advice from people who understand and have faced the same problems

anna marie

 

[Hazza]

Thanks Sharon, I just feel that it is my turn to give something back after all the help that I received from you and others. I know Anna Marie will be OK because she has a good grounding and it is just a case of learning to adjust the pump for good basals and maybe, like us, to change the bolus ratios.
We found that Lily needed less insulin at meal times and has gone from 1:10 to 1:13 but we changed it in small increments untill we got it right. I know everyone has different needs and different activity levels so you have to find your own background and bolus.
It's nice to know that we have someone there though when we need an answer.

Harry

 

[ams162]

hi all have reduced his basals for tonight and tomorrow he seems to be dropping rather quick all the time,

after swimming he was 10.8, before tea 12.4 had 55g carbs and 2.3 bolus now 5.9 will test again soon to make sure he isnt still dropping have set temp basal again of 80% for an hour as nurse said may need to after swimming, hes in a high swimming group and does constant swimming for the half an hour he is in the pool so can drop rapidly after he also had a packet of m and ms before swimming because of being low coming out ofschool but they dont seem to have registered 4hrs on unless the 12.4 is the only reaction thought he may of been higher than that tho

anna marie

 

[donnellysdogs]

A 1.6 oz bag of M&M's has about 27g of CHO. Generally I find that 8 M&M's will do me great before walking my dogs if I just want to ensure I stay even levelled. I don't know how many M&M's are in smaller bags, as I tend to buy a family bag and count them out when I need them.

Many of us have overdosed on too much sugary items, long acting goodies after hypo's, but you should be able to find a qty of M&M's or other nice sweets to have that won't raise levels so high. I also think that many of us have been so worried about hypo's and exercise etc that we will accept going that little bit higher around exercise time or for getting us out of a hypo.....however it will be just a matter of time before you don't overcompensate for hypo's or exercise. I was at a point of dismay around walking my dogs each day and going low, it has taken me a while to sort out, but I am stable now without the highs and lows and boy, I get a great sense of achievement after every walk when I have stayed level.

That was quite a drop after tea from 12.4 to 5.9 - was that with an extra' bolus amount? Just a little worried Dylan will dip low again, as if the reading comes down to fast Dylan will still have some more of the insulin working in him to take him lower than the 5.9.

It is early days Anna Marie. It is so much of a different regime, previously I would haven't tested after a hypo to be quite honest until the next blood test was due, but initially on the pump I did test until my level came back up to 5, I did watch how long it took, and I did do another test 2 hours later. If three is ever a serious hypo, don't forget you can turn off the pump.....

Don't panic with high's and low's. You will see patterns very quickly because of al the monitoring...........boy, we are all so different, but I have so much admiration of the parent pumpers out there!!!!

 

[ams162]

hi again

he had a bolus of 2.3 ( 1.8 carb bolus and 0.5 correction ), just before bed he has said he felt low tested and hes 2.6 so given 15g of carbs i have also lowered basals for tomorrow to 0.2 and reduced carb ratios as fell he is going low too much would rather go the other way and build it i know u all said dont change too much but he seems to be dropping so much and fast too.

no fear of missing anything 12 tests and counting put my repeat in today for more test strips going through them like nobodys business :lol:

anna marie

 

[Hazza]

Hi Anna Marie, when we started we were only on .15 basal and Lily was high quite a lot as you can imagine, it became clear quite early that she needed more basal so we increased it to .20 and this worked pretty well. We have since tweeked the mornings back to .16 and the evenings up to .26 This has been working for us for the past couple of weeks and Lily is pretty stable unless we calculate the carbs wrongly but at least she (and we) has a good nights sleep.
There will be some back and forth with the basals untill you get it just right and suited to you, just remember that you are only on day 2 and you will need to let the basals settle for a couple of days before making too many changes. I would say that you have done the right thing in reducing his basals to .2 but test regularly and don't try to make everything right in one go. If he runs a little high you can always correct but it's sometimes difficult to get them to eat when they are low, especially at night.
Keep us up to date.

Harry

 

[ams162]

thanx harry i will keep u informed lol

i dont want to change too much too fast but dont want him to be hypo quite so much either so i figured lower it a touch and then let it settle abit see where we are then im pleased with some of the results its just those lows.

i didnt expect things to be perfect instantly and im prepared to put plenty of work in to make it so over the next few months and beyond so that dylan can lead a more normal life. still loving the pump tho and lets see what day 3 will hold

anna marie

 

[Hazza]

Good for you. I like your spirit and I am sure you will be there soon. I seems that you have started high on the basal rate where we started low. I suppose each nurse will have different methods. If we had started on a 50/50 split Lily would have been hypo most of the day so I'm pleased that we did it starting on a low basal and then turned it up a bit at a time.
You are really getting to grips with it and will soon have it down to a T.

Harry

 

[ams162]

i think having advice here has really helped me, i think anyone who hasnt been through all that we go through can possibly understand how it feels to have the daily worry we face, we all do the best we can and hope its good enough im sure there are people that struggle more than we do and in a way im glad we are dealing with it now rather than when they hit the teenage years

just a quick update bloods last night and this morning

8pm- 2.6 gave 15g
10pm- 4.2 gave 15g
11pm- 9.3
2.30am- 16.2
7am- 12.7 60g for breakfast 4.6 bolus and 0.7 correction

slightly better than yesterday held of on the biscuit but couldnt leave him at 4.2 either so he had 15g of fast acting. waking bg 3.0mmol better so ill take that for day 3

anna marie