Whats going on?

[Hazza]

My daughter started on a pump last Monday and I know that it is still early days but her numbers are much worse than when she was on injections, and they weren't so good.
We have had really good night time levels on a couple of occassions but generelly they are poor.
Yesterday we had to change her canula as it was hurting her so we thought that this could be causing the high numbers. After changing it her levels were 7.8 within 4 hours, GREAT, that was at 5 pm then when we tested her at 8 pm she was up to 18.5. I gave her a correction dose of 1.5 units which should have brought her down to about 6ish, checked her again at 10pm and she was still 16.3, again at 12pm and she was 15.0 checked at 2 am and she was 13.8 so she was comming down but very slowly.
At breakfast time she was 9.9 and at 9.30am she was 13.4.
Her basal is 4.2 total for the day and night but her carb ratios are 11:1 or 12:1. Before the pump she was using 5 units of levermir at night and then around 15 to 20 units per day of novo rapid to cover her carb boluses.
I am so frustrated and up to now the pump has been a step backwards for us.
Will it get better soon as we feel like giving up and going back to the injections.
Lily is 7 and of slight build weighing only 26 kg so certainly not overweight.
:?

Sorry for the rant

Harry

 

[iHs]

Hello Harry

It's my guess that youve got a box of duff infusion sets. The new Flexlink Plus 6mm sets are causing problems I suspect due to the way they have been manufactured.

Ring Accu chek and tell them to send you out some replacements not using the same batch number.

The more people complain, the more Accu chek will need to do something to rectify the situation :x

 

[jopar]

Lack of basal testing!

The pumps basal isn't adjusted to suit her background needs, the only real way of sorting this out is basal testing where you fast and test every hour not a 24 hours fast though, split down into sectors over-night, morning and afternoon's.. when fast testing you may have to abort if BG becomes too low or high then you do need to treat appropiately..

I also suggest that you invest in a book called Pumping Insulin by John Walsh, it's the pumpers bible can be obtained from Amozon very easy to use, the authour is diabetic, also a diabetic consultant (American) so it's written from both angles his medical knowledge and actually being a diabetic..

It can feel like taking a step backwards as you learn a new method and changing how you see/work with her diabetes, it can take time to pin down the basal's profiles and really need to give up to 6 months to get the best benefits but you will see them, just takes a bit of work

 

[Hazza]

Hi and thanks for the replies.
iHs, I will try to use a different infusion set from another batch and see if this helps at all.

Jopar, we have been doing the basal testing with our DSN, hence the 2 hourly testing as we were told to do. We are trying to get her night time ones right first and she is going without supper so her last meal and bolus is at 5.00. However when she is this high we are unable to do the basal tests. It is so frustrating. We are getting no sleep and Lily is like a pin cushion.
We have the Pumping Insulin book and according to everything that I have read she should be on 50% or near enough of her TDD which means around 10 units split into 24 hors and then tweaked for finer control, she is, however, only having about 25% to cover her basal. I will have a talk with the nurse and try to find out if this needs to be increased. I can understand the need for caution during the night as we don't want her to be hypo but it still seems a very small amount of background according to all other sources.
Thanks again for the suggestions, it is very much appreciated.

Harry

 

[sugar2]

Harry,

When I strated on my pump the DSN put me on a very conseravtive basal rate...so I didn't hypo. That made perect sense...but the rate was far too lwo and I increasedit over the next week. It could well be , that if your daughters ontrol was not good, they did not have the bext data to work from (not a critisism...just teh way it is!) so it is going to take a while to get her rates correct.

I think you are doing the right thing. It is easy for me to say I increased my artes" but I am not a child, and I can easily control my own day, so that I am ready for a hypo, and deal with it...with a child, thsi isn't teh case, and you can't afford to over estimate teh insulin requiremnsts.

Thh pump will improve her control...just takes a while to get it working well for her.

 

[donnellysdogs]

I too changed all my basal levels within 1 week of them being set up by DSN/rep. Not one was right. Don't be afraid to take control of the machine and chnage the basals. Remember if you are high at 9am in morning , you would need to raise the basals from 5am-8am to lower the BG's at 9am. I was told not to change the basal rates more than 0.2, but to counteract my highs first thing in the morning I had to raise some of my levels by 0.5.

Accuchek give excellent diaries for their pumpers to use, and it is easy to see patterns. It is easy to see if patterns occur because of our bodies, or the pump/consumables.

Because my foos and routines are so regular, I could see that my basals/bolus's were incorrect, and because I write down every cartridge change/every set change/positions in body etc With the help from others I was able to establish that it was actually a box of sets that were causing my recent problems. I was on flexilink and flexilink plus's but have now changed to Rapid D's 6mm since establish that the set changes were causing me problems every 3 days for the whole of the 3 days till the next cartridge and complete tube/set change.

The basal testing sheets that I was given, and were in our instruction books were hopeless, as they didn't allow for me to write down whether I had changed a set the day before, or what exercise I had done or not done. I still write down what times I walk the dogs each day, whether it was long walks or short walks, and if the GP changes my medicines for my fibromyalgia.

My consultant and DSN were glad to see that I had taken control myself (even giving myself the advance menu on the remote/pump). I firmly believe that it is the children/family that manage control, not the HCP's-they don't actually live with the pump 24/7/365 and can only give guidance from what they have learnt from the pump manufacturers, other patients, and training courses.

Look for patterns, don't be afraid to take control, you will master it before you know it.

 

[Hazza]

Hi Donnellysdogs, the DSN has said that we can start to change the basal rates ourselves now that we know the workings of the pump. For the last couple of nights we have been testing and changing the basal rates and have managed to get the readings down to reasonable levels. ie from 14 at 2am now down to 9 and waking up with a reading of 6 at 7 am. Quite pleased with this but we still need to get the 12-2 oclock ones down a bit more. What wories me is that if we reduce these numbers we don't want her to be hypo when she wakes up as she seems to come down through the night.
Does that make sense? She is still only on a quarter of he TDD for her basal and as we get the basal right her bolus is reducing. She was on 11:1 ratio for the most part and has now gone to 13:1, not complaining about that.
We are getting there slowly but it is quite exhausting having to test through the night, we will keep doing it though untill we are satisfied that we have it right.

I really appreciate all the help.
Many thanks

Harry

 

[donnellysdogs]

Well done on getting such an improvement....so if your 2am reading is still about 9, then you would still need to raise the basals a little from 11pm-1am. If levels rise between 12 midnight and 2am you would need to raise the basals from 7pm onward I have assumed though that you are not doing a food and bolus at 11pm at night that would have an effect about 2am!!!!! You have to look at the fact that BG's are dropping 3 units between 2 am and 7am, so you may have to lower your basals from 2am though to 6am, otherwise if you get a lower reading at 2am, you may well find the BG's will drop far too low by 7am.

You sound as if you have probably realised this already....

I think you have done amazingly well.

Once you can get reasonable levels during the night, give yourselves a break from the testing. You don't have to get perfect levels, just reasonable ones without hypo's. Testing nightly initially can be a drainer on everybody during the following days, and may give anxiety before going to bed....

I did the opposite, I wanted my daytime levels right first, as during the day I am by myself, and at night my husband is there. My DSN didn't mind me asking to do the opposite of what is 'normal' practice for new pumpers.

Make sure you keep good records of your food, bolus's and correction's and even daily activitys, as it makes it so much easier to find out the patterns to what is happening.

Christmas will be an adventure. I have only been on pump since mid August, and this is my first Christmas with it, and I had been wondering on how to have a few treats, so have had a couple days practising this week!!! (First ime I have had snacks between my bolus's) and am quite confident now. Few weeks ago I went out to friends for a takeaway fish n chips-and I even took my carb conerting book and weighing scales with me. Last week when we had fish nchips again, I knew exactly how much food and bolus to have without weighing or converting because I had already done it and written it down.

You will definitely find that basals and bolus levels will vary from your initial set up. It will fluctuate depending on weather, illness, exercise, but you will definitely manage it.

Don't worry about what your TDD's and bolus/basal ratio's are initally, more important that you find out what works. If then you find that you are on a different ratio to 50/50 or 60/40 then it can be amended quite easily. The TDD is what works for each individual, and what works for one person will be totally wrong for others, the TDD is totally irrelevent and nothing to worry about.

 

[Hazza]

Thanks donnellysdogs, we have had a bit of a hiccup today as Lily was sent home from school poorly. Her levels have been quite high (10 to 13) but this is more than likely due to her not feeling well.
We have not tested during the night (except 3 oclock when I did a sneeky one ) she was 9.2 then so maybe leveling off a bit.
We also have an appointment for the flu jab on Tuesday but we may cancel that as we don't want her to be poorly over Christmas. It will certainly be an adventure.

Thanks again for all the advice

Harry

 

[donnellysdogs]

Harry

You must also think of yourselves, as well of course as your daughter. Doing a blood test at 3am will also disturb you sleep/wake patterns. With a BG of 9 at 3am in the morning it really isn't too devastatingly high. If you were to rraise the bolus's each hour by 0.2 you will find a difference.

I work it out like this:

If my level was 9 (and it was!!) I thought that was 3 units higher than I wanted. My bolus correction factor is 1 unit lowers my levels by 3, so I needed to give myself an extra unit of inulin over 3 hours prior to my high's. So I actually increased my basals by 0.3 for the 3 hours before my high's.

If your daughter was above 12, I would really test each night till it came down, but you also m=need to think of your daughter, but yourself as well. You are well clear of really bad high's and well clear of really bad hypo's so just try upping the basals from 11pm to 3 am and lowering them thereafter.

The night time levels to me, are incidental compared to the day time-at night time you are there to help, but during the day time your daughter may be at school/activities etc. Providing your daughter is stabilised at under 10 during the night you can gradually adjust the levels without doing radical testing each and every night.

I have PM'd you. It really sounds as if you and your daughter are managing really well, despite her feeling poorly yesterday. You will manage it, just don't rush everything, and give yourself and your daughter some 'free time' without getting stressed at levels going up and down. I certainly didn't do so much testing when I was on MDI. It is initially a huge impact on everybody, but I think you are almost at the stage of not having to do blood tests during the night, so that is fantastic so quickly. It is only a little bit of tweaking and you can all sleep knowing that your daughter is completely level..

Well done to you both....
Sharon