Change to Basal/Bolus

[shirley]

I am posted on the General Messageboard in the past but would really appreciate some guidance from other parents.

I am the Mother of a 20 year old young man who has been type 1 for 18 months. He has learning disabilities so I have full management of his insulin and blood testing as he has no awareness of his levels.

He was given mixed insulin following diagnosis (with no explanation whatsoever about administration etc) but we had no difficulties to begin with as he was honeymooning and it was very easy to keep his levels very steady.

That has changed and it has become increasingly difficult to do this. He has an excellent HbA1C of 5.9% so on the face of it, it looks like we are doing well but I have had to invest in a Freestyle Libre so that I can more closely monitor his levels, particularly in the night and it is just such hard work with no pattern generally of lows and highs.

We have a Consultant's appointment next week specifically to discuss changing insulin regime. At the last appointment, the view was that we were doing well so why change. I now feel that our HbA1C may remain quite low but the regime is so unflexible and tweaking the doseage is virtually impossible when there is a mix, let alone ever doing corrections. We don't get very high numbers but sometimes he stays higher all day for no particular reason and similarly overnight. On other nights he goes down into the 2's and 3's and I get little sleep.

I realise that a change will involve at least as much work but would really appreciate feedback from anyone who has faced this decision also. I know of course that we can try and always change back if necessary.

Many thanks in advance.

 

[Redkite]

Hi Shirley,

My son started off on mixes aged 4, and we moved onto MDI (multiple daily injections) about a year later. He later moved onto a pump, which solved some of the problems with MDI. I would say that MDI is harder work, but does have some advantages.

With mixes, you have to inject and eat at fixed times, and meals/snacks need to contain consistent amounts of carbs (and a similar type too - e.g,you'd get a different BG result 2 hours after eating from 30g carb in the form of mashed potato compared to pasta). Mixed insulins are simple but need a very regimented lifestyle, and like you've found out, there is no flexibility to correct a high level or to cope with illness. The BG profile in my son had huge swings, up into the 20's between meals and back down to 3-4 mmols. It was hopeless for him.

MDI will need one or two injections a day of a basal insulin (usually one of the newer long-acting analogues - Lantus or levemir). The theory is that these keep BG levels flat across the 24 hours, and you can just eat whenever it suits you, injecting fast-acting insulin (humalog or novorapid) to match the carbs eaten. It means more injections, and for best control, more frequent BG tests too (though you may not need this if your libre is accurate).

I guess it depends on what suits your son best. Would he find it distressing or difficult to have more injections? It sounds like he is achieving a fab Hba1c, but if this forces him to eat when he doesn't want to, or have swinging BG levels, then MDI is likely to be much better.

 

[shirley]

Thanks Redkite for your reply. He does not mind the injections and I don't mind the hard work, at the moment I feel that I just cannot predict where he is going to be (BG wise) at any one time can never relax. I appreciate that diabetes doesn't behave as you would expect but there is just no scope for adjustment.

We have also been offered respite and I could not contemplate anyone else looking after him with the current highs and lows. I have to be so vigilant overnight and as you know, if I try giving him less insulin, he goes high and if he wants to eat more, if I give him more insulin it might stop the after meal peak but then he goes low many hours later.

When we are away from home we have to try to eat at fixed times and sometimes this is so difficult and we dare not give him carbs at lunchtime as he has no faster acting insulin left and goes high so lunches out with friends are no fun at all.

I think I am talking myself into changing. It is comforting to know that others have struggled so much on mixed as it makes me feel something of a failure.

I understand the theory of basal/bolus, did you find that your son's BG's were a little more predictable and controlled once you changed?

 

[Northerner]

Just a suggestion, perhaps he could stay on the mixed, but have a fast-acting available for unplanned snacks and corrections? This wouldn't contain the slow-acting element of the mixed, so it could be more accurately dosed to match the food/snack/high? Or might this just complicate things even more?

 

[Redkite]

To be honest, MDI for us brought a different set of problems. He was only 5 and the Lantus pen comes in whole units, so adjusting the dose to suit him was impossible really. Also, although it has a flat profile in theory, it wasn't the case for my son. The insulin would peak a few hours after injection, causing massive drops in his BG, and then run out after about 20 hours, leading to high levels in the late afternoon, especially if he did any after-school club like football or swimming. I had to put him to bed with a BG in the high teens to prevent a hypo by morning! But that was our experience - many people get on just fine with Lantus.

I find the pump is far better - have you considered or been offered a pump?

 

[shirley]

Hi Northerner, thanks for your imput. I had thought that would be a solution and asked for that at our last appointment. Our Consultant said he would not give us this, he seemed to think that as our son is so small even a small amount of fast acting on top of the mixed part of the fast acting would send him too low.

The profile of our current insulin Humulin M3 seems to suggest that it peaks at 4-5 hours. This would be fine but is not reflected in the graphs we see on our Libre. Jamie has his evening injection at 6.30pm and on some evenings he goes up to about 10 after his meal and drops down slowly, dropping to a low of about 2 or 3 at 2am and I have to give him jelly babies. On other days, when we haven't done anything different, he stays up at 10 until the morning.

I have been getting up increasingly early in the morning to give him his morning dose to stop the rapid early morning rise and some days (after the same breakfast) he goes up and stays up until lunchtime and drops low in the late afternoon. On other days he stays quite level. There is absolutely no pattern whatsoever. He has approximately the same amount of carbs each day at each meal. I appreciate that there are other factors, the weather and possible stress which is difficult for us to detect because of his other needs.

Sorry if this is all much too detailed but I felt that I had some sort of control and now feel that I have no idea what I am doing.

 

[trophywench]

Shirley

Us old uns have all had to change from mixed insulins to basal bolus - they hadn't invented them yet when we were first diagnosed! No you can't predict things on mixed but since you could only urine test originally since they hadn't invented glucometers either at the time - being too high or low didn't concern us LOL Well it did, but you might not know you were low until you almost got to the falling over stage. This led to an awful lot of us deliberately - almost unconsciously - making sure we were NEVER low and thus we never achieved fantastic A1c levels.

Carb counting and dose matching (I could already do the first) was a revelation to me, and my diabetes was much better controlled.

You aren't a failure by any means. You will have to learn to carb count - but your team should get in touch with the team at Sandwell Hospital if they need help teaching carb counting to adults with learning difficulties. Their dietician produced really good teaching material for a lad who is a patient there. I met the young man - he looks his age - mid 20s - and he's a very nice chap. If you taped the round the table conversation a group of us had which included him - you'd wonder why that 10 year old was with the adults? They have of course used it for others since him and also when English is not the patient's first language. Anyway - all this has really 'sunk in' with him. You or I could throw him a question about 'what would you do if ......?' and he'd answer us correctly and quite confidently.

So it IS perfectly possible. For both of you!

 

[shirley]

Many thanks again for your reply. I think I will give it a try and have a look at the online carb counting courses. Unfortunately we are at Colchester Hospital which is not the most progressive in the country but Jamie has a Consultant for other issues in London so we could transfer there for his diabetes care if they are not helpful.