# New here - saying hello :-)



## mumtokieren (Jan 19, 2011)

Hi, I have just stumbled across this forum and thought it would be nice to join as I am a little down and struggling to cope with things a bit at the moment and I guess it's nice to be able to share these worries with people in a similar situation.
My son was 10 yrs old a few days ago, and was diagnosed with T1 diabetes shortly after his 8th birthday.  At first I seemed to accept this amazingly well, but lately, for some reason, my worries about this horrible disease seem to be increasing, especially after catching sight of an article on "dead in bed" syndrome!   I am now so fearful I am going to lose my precious boy in his sleep that it is having an impact on my life in a big way (although of course these fears are NEVER shared with my son!).
Anyway, I am hoping help and support from other parents might help me accept that this is a rare occurance and enjoy each day that bit more x


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## Steff (Jan 19, 2011)

Hi there and a warm welcome to the forum mumofkieren sorry you have to be here xx they is a great set of parents on here who will give you all the support and help you need...


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## Fandange (Jan 19, 2011)

Hi There and welcome to the forum!

Although I've only been a member a few weeks, I have found some excellent information and support here. 

My younger son was 9 when dxd (Oct '09) and while it was a shock at first, I was grateful it was T1 and not something unmanageable. In Nov last year, my elder son was dxd T1 at age 14. I found this more difficult to come to terms with. He was (is) strong and healthy and it just didn't seem fair!

So, I found this forum and read other people's advice and stories and it has lessened the sting. It's good to know that you are not alone. Diabetes can be a lonely road.....please feel free to share here.

Best wishes, Angela


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## Northerner (Jan 19, 2011)

Hi, welcome to the forum  Lots of lovely parents here that I am sure will offer you great support, plus a lot of our members have grown up with diabetes so can often help out by giving their perspective too.

Another place you might find useful is the Children with Diabetes website:

http://www.childrenwithdiabetesuk.org/

If you haven't already got a copy, I'd recommend Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas - a really excellent resource for Type 1 diabetes.

Please feel free to ask anything you are unsure of, or to have a good rant or a moan with people who understand the fears and frustrations you feel.


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## chelle2 (Jan 19, 2011)

*Hallo*



mumtokieren said:


> Hi, I have just stumbled across this forum and thought it would be nice to join as I am a little down and struggling to cope with things a bit at the moment and I guess it's nice to be able to share these worries with people in a similar situation.
> My son was 10 yrs old a few days ago, and was diagnosed with T1 diabetes shortly after his 8th birthday.  At first I seemed to accept this amazingly well, but lately, for some reason, my worries about this horrible disease seem to be increasing, especially after catching sight of an article on "dead in bed" syndrome!   I am now so fearful I am going to lose my precious boy in his sleep that it is having an impact on my life in a big way (although of course these fears are NEVER shared with my son!).
> Anyway, I am hoping help and support from other parents might help me accept that this is a rare occurance and enjoy each day that bit more x


U r in the right place everyone here supports everyone I am so relieved to find support. I have T1 for 30yrs daughter dx22/12/10 so in 1st stages of dealing with it myself. Thinking of you.


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## shiv (Jan 19, 2011)

Northerner said:


> Another place you might find useful is the Children with Diabetes website:
> 
> http://www.childrenwithdiabetesuk.org/



As a parent, the CWD emailing list is one of the best resources you will ever come across - parents emailing each other every day asking questions, sharing experiences etc. Plus they have mini holidays and conferences especially for families with d!


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## macast (Jan 19, 2011)

hi Mumtokieren..... welcome to the forum.  I'm new here too and have found everyone to be really friendly and helpful..... hope you do too


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## mumtokieren (Jan 19, 2011)

Thank you so much for the warm welcomes x


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## bev (Jan 19, 2011)

Hi Mumtokieren,

Welcome ot the site although sorry you have to be here.

My son was diagnosed two years ago and he is twelve so I know how you feel. Unfortunately, there is a risk - but please understand that this risk is tiny and rare. Educate yourself and find out all you can - it is the only way of keeping your fears at bay. Join the list that Northerner mentioned - there are over four hundred parents on there and I will say hello - they are all lovely and all understand how you feel.Bev


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## mumtokieren (Jan 19, 2011)

Thank you bev ~ do all you guys test through the night too? I only do occasionally atm but think i am now going to every night after reading about such a gut wrenchingly scary, albeit rare event. My son seems to be a little hypo unaware atm too which is even more worrying


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## Fandange (Jan 19, 2011)

Hi mumtokeiran,

I always look in on my boys before I go to bed and if they are sleeping soundly, I don't usually disturb them. However, if it has been a day of ups and downs, or particularly stressful or active, I will take a blood test on Bede (the younger). So far, Byron has woken himself up both times he has gone low in the night. 

Angela


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## bev (Jan 19, 2011)

mumtokieren said:


> Thank you bev ~ do all you guys test through the night too? I only do occasionally atm but think i am now going to every night after reading about such a gut wrenchingly scary, albeit rare event. My son seems to be a little hypo unaware atm too which is even more worrying



Hi Mumtokieren,

I test at 11.30pm and usually again at 3am (when the body naturally drops) and sometimes if having a 'bad' night I test more than that. We have an insulin pump and also use sensors - so if Alex is wearing a sensor, then I rely on that to alarm and wake me up. If you are thinking about what time to test - I would suggest the 3am test as this is when the drop naturally occurs.Bev


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## Semarroy (Jan 19, 2011)

Oh I feel for you. I felt the same worry and had the same 'white panic' about my son. But ... statistics show that per 100,000, 20-60 people with type 1 diabetes under the age of 40 will suffer dead in bed syndrome. So the worst case scenario is a 0.06% chance. It is more risky being a passenger in a car, please try to put this very very rare and unlikely occurence out of your mind. Big hugs xxxx


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## bev (Jan 19, 2011)

Fandange said:


> Hi mumtokeiran,
> 
> I always look in on my boys before I go to bed and if they are sleeping soundly, I don't usually disturb them. However, if it has been a day of ups and downs, or particularly stressful or active, I will take a blood test on Bede (the younger). So far, Byron has woken himself up both times he has gone low in the night.
> 
> Angela



Hi Angela,
Unfortunately, one cannot rely on a child waking if hypo - sometimes they dont. I am not trying to worry you unnecessarily, but if you dont test before you go to bed or through the night - then you dont really know what is happening to levels whilst they are asleep. Exercise can have an effect for up to 48 hours afterwards and can affect levels whilst sleeping. Has your team offered you the use of a CGM, as this would be a good way of finding out what is happening to basals through the night.Bev


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## mumtokieren (Jan 19, 2011)

No, never been offered a CGM ~ i think however he did have one on a good few months back for about 3 days as my son was waking intermittently with.migraine headaches and was vomiting all day and they wanted to see if it was down to him having hypos in the night ~ i was told he didn't have hypos on those nights at least. He still gets these headaches and sickness which they now attribute to cyclic vomiting syndrome ~ just something else for my poor baby to have to endure 
Anyway back to bedtimes ~ i test him about 10ish before bed ~ we don't generally eat tea till about 7ish so i am conscious his humalog is still probably at work so i rarely correct unless it's over say 13 ~ i then usually let him sleep till 7am but Im now going to start testing at 3am too x at least then i know in my heart I'll be doing everything i can to try to keep him safe x so in total he'll be having 6 tests a day.


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## Fandange (Jan 19, 2011)

So much to learn!! What is a CGM, Bev?


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## bev (Jan 19, 2011)

Fandange said:


> So much to learn!! What is a CGM, Bev?



Hi Fandange,

We never stop learning.
A CGM - a continuous glucose monitor. This is a device that is inserted onto the bottom or similar and it measure the blood glucose every three or five minutes depending on which one it is. Alex has a pump with a built-in CGM and we put a sensor and transmitter on his bottom. It tells us his blood glucose every three minutes through his pump and so we can react to either a hypo or a hyper before they get too bad. You can also get a CGM from your clinic - but they might have to download the data after wearing it for a week - so its not a 'real' time CGM - but can be good to see if there are any lows during the night or highs. The NICE guidelines say that every diabetic child should be offered the use of one to monitor over a period of time.

You should both join the CWD list and you will get far more detailed information than I have given, as there are experts on there who have been doing this for years (all parents of a child with type 1). There are also a few with two children who have been diagnosed.Bev


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## bev (Jan 19, 2011)

mumtokieren said:


> No, never been offered a CGM ~ i think however he did have one on a good few months back for about 3 days as my son was waking intermittently with.migraine headaches and was vomiting all day and they wanted to see if it was down to him having hypos in the night ~ i was told he didn't have hypos on those nights at least. He still gets these headaches and sickness which they now attribute to cyclic vomiting syndrome ~ just something else for my poor baby to have to endure
> Anyway back to bedtimes ~ i test him about 10ish before bed ~ we don't generally eat tea till about 7ish so i am conscious his humalog is still probably at work so i rarely correct unless it's over say 13 ~ i then usually let him sleep till 7am but Im now going to start testing at 3am too x at least then i know in my heart I'll be doing everything i can to try to keep him safe x so in total he'll be having 6 tests a day.



Hi Mumtokieren,
I think thats a good idea and it will give you peace of mind. If levels are too high at the two hour mark after eating - then the ratio is out. I would correct anything over a 10 at the two hour mark. If they are too high after the four hour mark after eating - then the basal is probably out and might need addressing.Bev

p.s. I forgot to say that if the levels are high after eating - you might need to inject earlier than you are doing - maybe ten minutes before eating to give the insulin time to start working.


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## mumtokieren (Jan 20, 2011)

Ive always been advised to give his insulin immediately after his meals in case he leaves something I've given him insulin for x
tested him at 3 this morning and it took me nearly an hour all in all to get back  to sleep


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## bev (Jan 20, 2011)

mumtokieren said:


> Ive always been advised to give his insulin immediately after his meals in case he leaves something I've given him insulin for x
> tested him at 3 this morning and it took me nearly an hour all in all to get back  to sleep



Hi Mumtokieren,

The problem with doing this is that food releases glucose into the bloodstream within 2 minutes of starting to eat - so if the meal takes 20 minutes to eat - then levels are being elevated for all that time and then the injection takes another 40 minutes to peak - so the food is hitting at a different time than the insulin is peaking and you will get spikes. If you do this for every meal that is 3 spikes per day which all adds up and increases the load on the hba1c. The aim is to match the peak of the food to the peak of the insulin.

The reason for injecting 10 minutes before eating is that it takes that long for insulin to start working - so you are giving it a head start before the food hits.

If you are worried that Kieren wont eat all his food - you can give him a glass of orange or similar to make up for the food he hasnt eaten. Or you can give half the dose before eating and then if he looks like he is going to eat it all then you can give the rest halfway through.

Testing through the night is tiring - but you get used to it and will fall asleep quicker each time. What level was Kieren when you tested him.Bev


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## mumtokieren (Jan 20, 2011)

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


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## bev (Jan 20, 2011)

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



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


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## mumtokieren (Jan 20, 2011)

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? 
Am I thinking too much?


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## bev (Jan 20, 2011)

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?
> Am I thinking too much?



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


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## Semarroy (Jan 20, 2011)

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.


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## mumtokieren (Jan 20, 2011)

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!


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## Mel (Jan 20, 2011)

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


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## mumtokieren (Jan 20, 2011)

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


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## bev (Jan 20, 2011)

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.



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


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## mumtokieren (Jan 20, 2011)

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



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!


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## bev (Jan 20, 2011)

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!



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


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## mumtokieren (Jan 20, 2011)

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



Aahh ok thank you Bev, I told you I was a worrier atm!


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## Ruth Goode (Jan 24, 2011)

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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