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New here - saying hello :-)

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He was high bev ~ i think it was my fault :(
He tested at 10 at about 10.30pm and rather than leave him i let him eat a digestive biscuit through my stupid irrational fear of him having a fatal hypo in the night and so he went too high :(
I really want to get this right and keep him safe
 
mumtokieren said:
He was high bev ~ i think it was my fault :(
He tested at 10 at about 10.30pm and rather than leave him i let him eat a digestive biscuit through my stupid irrational fear of him having a fatal hypo in the night and so he went too high :(
I really want to get this right and keep him safe
Click to expand...

Hi Mumtokieren,

Dont ever feel that something is your 'fault' - you did the best thing at the time. Dont look at the levels as a failure - look at them as cold hard data that is 'telling' you something, and in this case it was just saying that Kieren didnt need the biscuit - but you didnt give it to him to make him high - you gave it for another reason and it is so hard to get it right. You cannot ever feel that you are to 'blame' - you are not - you are a great mum and you are doing the best for Kieren.🙂It was also great that you tested - because you now know that if Kieren is 10 at 10.30 - then he doesnt *need* the biscuit - so it wasnt a wasted test at all - you are building up a picture of what is right for Kieren and that is great. Keep a log of all this and you will feel more confident leaving levels without 'feeding' them.🙂Bev
 
Oh thank you ever so much Bev, your reply has made me feel a little bit less guilty 🙂
Yes, you are right, I suppose trying different approaches is the only way I can get a real picture of what to do and not what to do in different situations.
Thank you again, I appreciate it 🙂 and I will continue to test nightly around 3am for the forseeable future!
What happens though when they get to, say, their teenage years and they (maybe) start getting annoyed at you wanting to test them through the night? Also, do adults do this also, or do they sense hypos more as they get older so that they do not have to live a life of broken sleep? Strange questions I know, but it's also got me wondering about why the rare phenomenon "dead in bed" syndrome as been attributed to nocturnal hypos - surely if this was the case, couldnt the same just happen during the day, if a hypo has a negative effect on heart rythmn? :confused:
Am I thinking too much?
 
mumtokieren said:
Oh thank you ever so much Bev, your reply has made me feel a little bit less guilty
Yes, you are right, I suppose trying different approaches is the only way I can get a real picture of what to do and not what to do in different situations.
Thank you again, I appreciate it and I will continue to test nightly around 3am for the forseeable future!
What happens though when they get to, say, their teenage years and they (maybe) start getting annoyed at you wanting to test them through the night? Also, do adults do this also, or do they sense hypos more as they get older so that they do not have to live a life of broken sleep? Strange questions I know, but it's also got me wondering about why the rare phenomenon "dead in bed" syndrome as been attributed to nocturnal hypos - surely if this was the case, couldnt the same just happen during the day, if a hypo has a negative effect on heart rythmn? :confused:
Am I thinking too much?
Click to expand...

Hi Mumtokieren,

Alex is 12 so we havent experienced the teenage things yet.😱I think its a case of trying to balance things and coming to an agreement that keeps a child safe but also allows for privacy. Adults tend to have more stable lifestyles and I think have more of a routine and they dont have growth hormones to deal with - so I think how the diabetes is managed changes over time.

DIB is rare - and nobody really knows why it happens. I do know of a 12 year old girl who died two years ago from this, and this is why I feel that teams should be telling people to test their children - even if its just a couple of nights a week - at least they will start to see patterns and whether levels ae dropping. I know how horrible it feels to worry about this - but try not to let it rule your life and cause you extra stress.

Do you think Kieren would be interested in going on a pump.🙂Bev
 
I called the hospital to get some advice on this and spoke to our diabetes team - their take is that night time testing should be done when they are ill or have had an unusual day (either up and down BSs or more exercise than usual etc). They also said that for our area (Hampshire) they have not had any DIB cases. These cases are more prone to adults apparently and alcohol related. It does happen, but it is incredibly rare. I guess it is establishing a balance between safety but also bearing in mind that you don't really want (well, I am speaking for myself!) diabetes to impede anymore than necessary on my childs life.
 
Thank you again for your replies 🙂
Erm, I am not sure yet Bev, I have spoken to Kieren about a pump, but the CGM thing put him off having something "stuck" to him all of the time, and he wants to feel as normal as possible, which I guess I can understand, but in fairness I am quite interesting in learning more about pumps and their benefits, and it will help keep him more stable and safe then I am defintely all for it! 🙂
 
Why not think about a diffrent pump if hes not keen on having a CGM attached , we have an animas 2020 and she would not be without it ever! she says it has revolutionised life , intrestingly her wish list for the amimas is smaller bolus and temp rate adjustments ,bluetooth so her blood monitor and pump can talk and CGM.

in our case it has made her more like the others not less
 
I guess as we've never discussed pumps with our diabetes specialist I've very limited knowledge on them so it will be interesting to first out more about them when our time comes x
 
Semarroy said:
I called the hospital to get some advice on this and spoke to our diabetes team - their take is that night time testing should be done when they are ill or have had an unusual day (either up and down BSs or more exercise than usual etc). They also said that for our area (Hampshire) they have not had any DIB cases. These cases are more prone to adults apparently and alcohol related. It does happen, but it is incredibly rare. I guess it is establishing a balance between safety but also bearing in mind that you don't really want (well, I am speaking for myself!) diabetes to impede anymore than necessary on my childs life.
Click to expand...

Hi Semarroy,
The idea that you spend the whole day testing levels and then dont do any tests at night just doesnt work I'm afraid. DIB is very rare - but the fact that it hasnt happened where you live doesnt really prove anything. I am not trying to scare you or others - but if you think that all children wake up when they are hypo - you are sadly mistaken. It has been proved through the use of a CGM that the majority of children do not wake if hypo. You are still fairly new to all this and I dont want you to worry more than necessary - but if you dont test at night then how can you know what levels are doing and whether there were any hypo's or drops in the night. Forward thinking teams advise testing through the night - normally midnight and 3am.🙂Bev
 
bev said:
Hi Semarroy,
The idea that you spend the whole day testing levels and then dont do any tests at night just doesnt work I'm afraid. DIB is very rare - but the fact that it hasnt happened where you live doesnt really prove anything. I am not trying to scare you or others - but if you think that all children wake up when they are hypo - you are sadly mistaken. It has been proved through the use of a CGM that the majority of children do not wake if hypo. You are still fairly new to all this and I dont want you to worry more than necessary - but if you dont test at night then how can you know what levels are doing and whether there were any hypo's or drops in the night. Forward thinking teams advise testing through the night - normally midnight and 3am.🙂Bev
Click to expand...

Oh my! Twice Bev!?? midnight AND 3am? If i tested twice a night, every night, i think i would crumble! I have to work and i do make sure i now test at 10.30pm when i go to bed then 3am but midnight as well, i think i might end up making mistakes through sheer tiredness! 😱
 
mumtokieren said:
Oh my! Twice Bev!?? midnight AND 3am? If i tested twice a night, every night, i think i would crumble! I have to work and i do make sure i now test at 10.30pm when i go to bed then 3am but midnight as well, i think i might end up making mistakes through sheer tiredness! 😱
Click to expand...

Hi Mumtokieren,
Dont worry - you dont have to take it literally - what I mean is that once the child is sleeping it is advisable to check before you go to bed - and then again at 3am or before if you feel that a hypo is likely.🙂Bev
 
bev said:
Hi Mumtokieren,
Dont worry - you dont have to take it literally - what I mean is that once the child is sleeping it is advisable to check before you go to bed - and then again at 3am or before if you feel that a hypo is likely.🙂Bev
Click to expand...

Aahh ok thank you Bev, I told you I was a worrier atm! 😛
 
Just want to say hello and please don't think you are worrying too much, we all feel the same and it is alway great to share your worries here with other mums, I mean parents ;-) Good luck
 
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