too many changes at once?

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hkk1970

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Harry had his hospital appointment this week and I believe his consultant has made too many changes on his pump. Harry has had higher readings from 9pm. So the consultant has changed carb ratios for dinner,tea and supper and upped his basal from 12pm through to early hours of morning. He totally ignored me when I told him that Harry had gone from 14 to 3.8 in a matter of a few hours on one particular day, and said that 3.8 was not a hypo to worry about!!! So, what am I supposed to do, tell Harry that when he says he is wobbly I say, don't be daft that's not a hypo, and I'm not giving you anything.

Since these drastic changes, he has gone down to 4,in the night so I have had to wake him up for a small biscuit cos I know he will hypo. He is also 4.3 before supper tonight, so yet again ,I face another sleepless night worrying.

Do you think, this many changes should have been done at once?

To be honest, it looks like I am going to adjust it all myself to try and get it right.

Sorry for the rant, but it's just a worry all the time.
Helen
 
Rant away Helen ! Hope tonight goes ok & you can relax a little. Good luck 🙂
 
Hi Helen,

I agree - too many changes!😱Your team should work with you not against you - you should all agree on the changes needed otherwise it just wont work in real life! If this were me I would put the basal back and keep the ratio change for at least 3 or 4 days to see what difference that makes before even thinking about changing the basals. When a child is so young I feel its dangerous to run them around 4 for bed as they are so active. Forcing him to eat in the night isnt ideal either and your team need to realise the impact this can have on sleep for everyone! Go with your instinct and make the changes when you feel you need to - your team are there to advise - not dictate. I hope you and Harry have a better night tonight🙂Bev

Oh and anything under 4 is considered a hypo so ignore your team and give Harry something. They should be pleased he has such great hypo symptoms! I think some teams need a reality check sometimes. Living with Type 1 is difficult - especially with a young child and if they had to get up in the night I am sure they wouldnt try to get such unrealistic levels!
 
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bev said:
Oh and anything under 4 is considered a hypo so ignore your team and give Harry something. They should be pleased he has such great hypo symptoms! I think some teams need a reality check sometimes. Living with Type 1 is difficult - especially with a young child and if they had to get up in the night I am sure they wouldnt try to get such unrealistic levels!
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There seems to be much confusion even (especially?) among HCPs. The best advice I have been given about readings in the high 3s is to avoid them in order to protect warning signs and to treat them to *avoid* hypoglycemia - ie you are not hypo yet, but running too close for comfort. Especially with meter variation!

Some different countries don't count anything until below 3.6, and some say cognitive impairment doesn't kick in until 3.0, but I'd agree that you should treat those 3.8s as if they were hypos, even though strictly speaking they may not be.

I also agree that a good rule of thumb is to only change one thing at a time, unless matters are really drastic. Shame too that you do not feel your opinions and input were properly listened too :(

Sound like you should take the advice as advice, but use your own hands-on skills and experience to make it work in the real world
 
You're quite right Helen, if you change everything at once then you can't see the wood for the trees. Don't feel you have to wait for the consultant's permission to make changes - you can clearly see that there is too much insulin acting now in that evening timeframe, so I would tweak the meal ratios so that he is starting the night a bit higher than the 4's! Then you can monitor whether the basal from 12pm keeps him stable or makes him drop.

As for the hypo advice, astonishing frankly! We have always been told "four is the floor" - and if you have a young child telling you he feels wobbly (horrid adrenaline rush reaction) AND this is confirmed with a BG in the 3's, I would DEFINITELY treat this as a hypo. In fact, if my son has the wobbly feeling and is in the low 4's I would usually advise 1 or 2 dextrose (his full dose for a hypo being 4) - because the adrenaline reaction for him usually means he is dropping very fast.
 
Redkite said:
As for the hypo advice, astonishing frankly! We have always been told "four is the floor" - and if you have a young child telling you he feels wobbly (horrid adrenaline rush reaction) AND this is confirmed with a BG in the 3's, I would DEFINITELY treat this as a hypo. In fact, if my son has the wobbly feeling and is in the low 4's I would usually advise 1 or 2 dextrose (his full dose for a hypo being 4) - because the adrenaline reaction for him usually means he is dropping very fast.
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Absolutely! You don't just consider the reading, you also consider things like time since eating and insulin on board. I've always treated a below 4.0, and I certainly wouldn't risk it when a child is involved.
 
Our DSN changed the target range in our meter so that it doesn't count it as a hypo unless we get less than 3.7. I think there was more than one reason for this, but partly so that if we get an annoying 3.9 at mealtime with no hypo symptoms we can just ignore it, pump will reduce the bolus size slightly to bring BG back up again. However if we get a reading in the 3.7-3.9 range and daughter says she is feeling wobbly then we treat it the same as any other hypo. Bearing in mind things like meter inaccuracies I think this is a reasonable way to approach it. But if anyone else is looking after her then we stick to the "four is the floor" rule as that is simpler for other people to remember. Immediately before exercise or bed I would also treat anything under 4 as hypo.

I also agree with everyone else that if you make too many changes at once you don't know which one has had the biggest effect, always try to change only one thing at a time. It can be very time consuming changing only one thing and then waiting to see what happens, but it's the only way to do it sensibly, if you are impatient you can end up causing worse problems.
 
Here in n. Spain hypo is 3.3 (60 mg/dl) but it's easier to remember "4 is the floor" especially mid-hypo!

If you've always considered 4 as a hypo, I'd continue thinking that way. Mum knows best is true in this case!🙂
 
Helen, do you have the book pumping insulin by john walsh? If not your best bet is to invest in that and use the book as your guide.
There is no way your son's consultant should be making changes at that rate.
No 1 rule for pumping is sort your basal out first. Basals are not an instant fix as we all know so take your time doing them.
Personally I would not allow anyone to make changes on my pump. They can suggest but not touch. 🙂
 
I used to let our DSN and Consultant make all the changes on my daughter's pump, because I didn't have a clue and was very nervous about it all. We are lucky, they are all very nice and seem pretty clued up. But sorting out problems that way takes ages when you don't see them every week; when it got to the point that I wanted to set up a second basal pattern for school holidays I asked the DSN about it, she was in a bit of a rush that day and just said " oh you can do that yourself can't you". 😱 That terrified me, but I'm so glad she said it; I thought about it for a few days, worked out what I wanted to do and then got on with it. Very nerve-racking at first but I'm now comfortable with making whatever changes I like, which means I can be a lot more on the ball and react to problems much quicker. Now if anyone on the medical team suggests any changes that I don't like I tell them and they usually let me do it my way, after all I'm the one that's got to deal with it every day. Just wish I'd thought of doing it myself a bit sooner!
 
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Thanks for all your replies. Seems I am doing the right thing for Harry. Yet again, we were up in the night giving biscuits, so tonight I have changed basal and go from there, though I do always feel guilty, changing without permission!!!
I have the pumping insulin book but not read it all yet, but made to feel better, when I read that a child under 6 years, you should aim for readings of 6 to 11 through the night. Helen
 
I think it's important you feel empowered to make changes and tweaks to the setup Helen.

You are the one who has the most observational data, and can see what is happening day-to-day.

Unless your consultant is happy for you to phone every single day (well actually multiple times a day) for an update and to consider how things are going, then H runs the risk of having to live through a set of (wrong) changes for weeks before another tweak is tried.

That's not to say you should dismiss the input of your team entirely, of course. Just that you need to be working with them as equal partners. They have lots of experience of diifferent people's diabetes and may spot things you have missed/be able to see the wood for the trees... but YOU have the most exact and precise knowledge of H's individual diabetes and how things work for him.
 
everydayupsanddowns said:
I think it's important you feel empowered to make changes and tweaks to the setup Helen.

You are the one who has the most observational data, and can see what is happening day-to-day.

Unless your consultant is happy for you to phone every single day (well actually multiple times a day) for an update and to consider how things are going, then H runs the risk of having to live through a set of (wrong) changes for weeks before another tweak is tried.

That's not to say you should dismiss the input of your team entirely, of course. Just that you need to be working with them as equal partners. They have lots of experience of diifferent people's diabetes and may spot things you have missed/be able to see the wood for the trees... but YOU have the most exact and precise knowledge of H's individual diabetes and how things work for him.
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Hi Eduad,

Very well said - I couldnt have put it better myself🙂It is always difficult when you are the carer of a person/child with diabetes to explain to people that you are well-versed with their individual diabetes and it can be difficult for some teams to 'allow' some parents to use their own initiative which I found frustrating with our old team.

Luckily our present team are fantastic and always tell parents that they are the experts in their child's diabetes as we know them better than anyone as we live with it 24 hours a day. Any changes that are required are discussed with Alex and myself and the team and we all decide together what needs to be done. Alex has on occasion been reluctant to make bigger changes as he worried about lows - and the team were happy for him to take things at his own pace and encouraged him to do it when he felt ready which gave him the responsibility and also made him feel that he was in charge but also had the support and advice if needed - thats a good team in my book!🙂Bev
 
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