Am I been precious or within my rights to feel unheard

Emmadixon

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19
Type of diabetes
Parent
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I do not have diabetes
My toddler is 3 and had T1 he was diagnosed back in Feb. My issue is this... Recently we have been noticing that on a night his bloods peak at times up to 20, there in range upon going to bed (let's say for arguments sake 7) and then begin to rise once all novorapid is out his system. This pattern happens at least 5 out of 7 night some times it drops After the peak so morning reading maybe 15,12 or even in range other mornings it stays high so rose to 20 stayed at 19 in the morning other random night he might only rase my 4mmol and drop back to normal by the morning, I think the basal lantus isn't doing its job and it's getting to me that the diabetes team feel it's injection sites and not this. My poor boy wets the bed because of his high sugars (he doesn't on nights where there in range) he wakes up crying and groggy and you can tell he must feel ****, i just feel like my concerns are falling on deaf ears and told they don't think it's insulin related. I'm unsure what to do for my boy I hate knowing it's affecting him so much.
 

donnellysdogs

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Oh I do feel for you and your son.....

With such a short space of time since diagnosis and also that other insulin injections do bring levels down then personally I agree with you...basal needs adjusting.

Have you been given 1/2 unit pens to use? Are you injecting the basal once in 24 hours?
 

Emmadixon

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Type of diabetes
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I do not have diabetes
Yep we have 1/2 unit pens he's currently on 4.5 units of lantus which is given once in a morning with his breakfast it literally lasts 8am till 8pm and then his little body is on its own, they say that because there isn't a pattern and he can vary every night it's not enough to confirm its his Basel where I think there's more than enough evidence to suggest it's that but I'm not a professional, his blood sugars are moderately ok during the day but again he's high in morning as where chasing the pre breki high x
 

donnellysdogs

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Ok... What are levels like during day?? Say from 8am to 8pm?

We can't officially advise you on here... We can tell you what we would do for ourselves...

I don't use lantus.. Perhaps @tim2000s can help for the acting time of it before it wears off....

It would be handy if you could possibly let us know what day time readings are including the times....

I can certainly see why you are so frustrated with your health care team!!
 

tim2000s

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As with all of these things, it comes down to dose per kg of body weight. Unfortunately I haven't seen a good guide for lantus absorption speed, but in a three year old, I would have expected a 4.5u shot to last longer than 12 hours. As a 100kg guy, 10u lasted roughly 12 hours.

As an adult, I would do a basal test in the evening and through the night and repeat it for multiple nights to gather the evidence that the insulin wasn't working properly and have empirical evidence that it was a regular patter which I could present to the healthcare team and say "I think you're wrong".
 
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ButtterflyLady

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I'm not T1 but I think you are right to be concerned and to keep trying to get your son's care team to sort this out.
 

donnellysdogs

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Agree with Tim... There's a bit of testing that you may well need to look at..

What time is last feed? Does level start to go up within 2-3 hours of that last feed?

Can you identify that it definitely say 3am that levels rise or say 1am etc?

Do you do 2 hrly testing over night at all?
 

Emmadixon

Member
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19
Type of diabetes
Parent
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I do not have diabetes
Hi guys he has his last meal at 5pm and then bed at 7 so no supper given, he doesn't always peak at 3am sometimes as you've suggested it's 1am the other night we watched it go from 5 to 7 to 10 to 17 in a matter of hours, we test before meals and 2 hours after as to see what the novorapid is doing, it was the team that suggested a 2/3 am testing as that's meant to be the tell tale sign of things not working. There argument is that because it's not like this every night there not sure what it could be, they also have a student dealing with me now which is frustrating. They've briefly mentioned the pump as one nurse said she things this would help regulate him through the night but as a team they all seem conflicted as a parent I'm doing nightly checks dealing with a wet bed an upset groggy toddler and a baby lol
 

ButtterflyLady

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Hi guys he has his last meal at 5pm and then bed at 7 so no supper given, he doesn't always peak at 3am sometimes as you've suggested it's 1am the other night we watched it go from 5 to 7 to 10 to 17 in a matter of hours, we test before meals and 2 hours after as to see what the novorapid is doing, it was the team that suggested a 2/3 am testing as that's meant to be the tell tale sign of things not working. There argument is that because it's not like this every night there not sure what it could be, they also have a student dealing with me now which is frustrating. They've briefly mentioned the pump as one nurse said she things this would help regulate him through the night but as a team they all seem conflicted as a parent I'm doing nightly checks dealing with a wet bed an upset groggy toddler and a baby lol
If the UK is the same as NZ in this regard, patients or their caregivers always have the option of not agreeing to be seen by a student. Student HCPs must be adequately supervised by licensed HCPs. I wouldn't want to be seen by a student if I was having complex issues like your boy seems to be having. My attitude is, they can practice on someone else. (And, before anyone says, "what if everyone took that view", I have had my fair share of student HCPs but if things are really complex then you need someone with more experience.) A good student HCP will involve their supervisor closely when needed.

If the team is conflicted, wouldn't the consultant have the final say?
 

tim2000s

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You need to have five to sevennights where you have tested 2 hourly between 7pm and 7am. If there is a pattern, it will clearly show if you do this. And then you can make appropriate noises with your care team. It is unlikely that the student has the experience required to deal with it, so you can make representations for a pump to a more senior doctor. You are going to have to push this one.
 
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RuthW

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If they are saying that there is no pattern, that they can't draw conclusions, I suggest that your records for the nights you test should include details of his evening meal (as much as possible, carbs, protein and fats), plus a few notes about his levels of activity during the day. It may be that the nights without rises are preceded by more physical play - his muscles then take up more glucose while he sleeps - or part of the rise is caused by the combination of fat and carbs in the evening. If either or both of those turn out to be the "confounding factors" in the pattern, they can be dealt with in future as they arise (with small tweaks to doses on the day in question). It can be difficult to see a pattern at first. But masses of note-taking and records does help.
 

Emmadixon

Member
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19
Type of diabetes
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I do not have diabetes
Everyone thank you for your help after a meeting he's going to have a constant glucose monitor fitted for a few days and then looking at the evidence they will look at an insulin pump, so hopefuly that will help regulate the night times x
 
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slip

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What Ruthw says is probably spot on, and (I'll probably shoot myself in the foot with this one) how many diabetics do we know that have constantly the same levels and patterns everynight? - NONE! they can't dismiss the morning highs because it doesn't happen everyday.

Whilst he has the CGM try and keep a diary on what he eats and when, what BS test results you do and his activity levels as well as his insulin. Get as detailed picture as you can, then the CGM will confirm what we suspect.

All the best
 
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donnellysdogs

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Good to hear your news ref CGM...
 

jo78

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12
Type of diabetes
Type 1
Treatment type
Pump
Hi guys he has his last meal at 5pm and then bed at 7 so no supper given, he doesn't always peak at 3am sometimes as you've suggested it's 1am the other night we watched it go from 5 to 7 to 10 to 17 in a matter of hours, we test before meals and 2 hours after as to see what the novorapid is doing, it was the team that suggested a 2/3 am testing as that's meant to be the tell tale sign of things not working. There argument is that because it's not like this every night there not sure what it could be, they also have a student dealing with me now which is frustrating. They've briefly mentioned the pump as one nurse said she things this would help regulate him through the night but as a team they all seem conflicted as a parent I'm doing nightly checks dealing with a wet bed an upset groggy toddler and a baby lol
Please continue inquiring about the pump, it can be difficult at first moving from injections to the pump. My 3year old at the time never had good control on injections, constantly having to change the bedding with fluctuations of highs and lows.
A specialist told me it would still be the same on the pump?
He was wrong!!
The pump changed her life for the better, and mine.
 
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