Hypo unaware

Ellies-mum

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Hi, my daughter is 14 and has been diagnosed as type 1 for 2.5 years now. Through trying to keep tight control of her blood sugars, she has endured many hypos and is now hypo unaware. Her lowest reading was 1.4 during the night. We found her drenched in sweat with eyes open and unable to move or speak....had to give her the jag in the orange box......so scary. So she doesn't waken herself at night if low and doesn't notice when low during the day either....was down to 1.7 yesterday with no warning signs.
My question is, how do we get the hypo awareness back? She has tried running high for a couple of weeks with only marginal success. Is there anyone else who is hypo unaware and if so how do you deal with it. I am considering getting the DEXCOM G5 but I will have to self fund it. Any help appreciated. Jane
 
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GrantGam

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I think hypo-awareness can be restored over time. It would take more than running high however, more like running "normal", consistently, for a good number of weeks/months with absolute minimal hypos. And when these hypos do happen, they need to be treated fast so that the body doesn't get used to the feeling of having low BG.

It's a lot easier said than done though. It's the tightrope that us diabetics try to balance on every single day.

It might be a good idea to start by understanding why your daughter is having too many hypos. Be it increased exercise, stress, uncorrected basal/bolus doses, a change in I:C ratio, etc, etc.

A handy tool (and a cheaper alternative to the Dexcom G5) would be a Libre. Although you wouldn't have the CGM data you'd need for hypo detection/alarms. You'd get a good picture of when the hypos are most frequent and if there is a trend to them. Such as always after dinner, during the night at a certain time, etc.

Good luck.
Grant
 

himtoo

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why can't everyone get on........
Hi @Ellies-mum
it must be terrible to see your daughter having these hypos -- ( i have had a few of them myself )
in order to attempt to regain hypo awareness a program of running higher ( average BG around 8.5 - 9.0 ) needs to be maintained for 6 - 8 weeks
I expereienced this first hand a few years ago -- and running higher like this did restore some awareness

I would also be talking to your daughter's care team for any assistance available ( temporary CGM ) , possibly going on a pump ?

Input Diabetes are a fab charity to contact for assistance in obtaining help with getting some help !!
 

Ellies-mum

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Thank you soooo much for the replies......really appreciate you taking the time to do so. We met with Ellie's diabetic care team yesterday and they advised Ellie to run high for a couple of weeks and have asked that we keep a food diary as she should be cutting out high sugar carbs and trying to eat more slow releasing carbs. I agree it makes sense to try and fix the underlying cause of the swings in her BG reading but it's just hard keeping her safe in the mean time....I did ask if they could fund just the sensors for the DEXCOM and I'd pay for the rest .....but no luck. Unfortunately she had an even lower number today....1.3...we will just need to test every hour and I've ordered libra to help but would just prefer DEXCOM with alarm. Will see where we are in 2 weeks but appreciate you think it could take longer. Thanks again. X
 

donnellysdogs

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You need to identify the cause... If 2-3 hours after a bolus then its the bolus ratio... If its any other time then normally its the basal.

High carbs do play a part in all of this.....the lower the carbs, the less insulin and the less room for error.

Also... The quicker the levels are dropping the less likely daughter is to feel them... However, although she does not think "I'm
Hypo"...... She may have other thoughts with hypo's that are relevant. Ie.. I never think I'm hypo.... However... For me. I never have any hunger, and never think about eating or testing unless I am hypo.. So that is actually my recognition. If I suddenly feel in my brain "I need to eat"... That is my hypo signal.....

It may be that your daughter has or does something each time that could trigger her long term to get help or for others to think "hypo".
I now have a box of sugar cubes in my bag and written on top and on a card inside is "I'm hypo"... Tell somebody. As I never used to tell anybody either.

A non diabetic counsellor advised this.. And it has helped me a lot after 30 years!!
 

donnellysdogs

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Thank you soooo much for the replies......really appreciate you taking the time to do so. We met with Ellie's diabetic care team yesterday and they advised Ellie to run high for a couple of weeks and have asked that we keep a food diary as she should be cutting out high sugar carbs and trying to eat more slow releasing carbs. I agree it makes sense to try and fix the underlying cause of the swings in her BG reading but it's just hard keeping her safe in the mean time....I did ask if they could fund just the sensors for the DEXCOM and I'd pay for the rest .....but no luck. Unfortunately she had an even lower number today....1.3...we will just need to test every hour and I've ordered libra to help but would just prefer DEXCOM with alarm. Will see where we are in 2 weeks but appreciate you think it could take longer. Thanks again. X

Depending on circumstances, postcode etc and if in England.. Your CCG... You may get funding if your Consultant will back you / daughter...
 

Ellies-mum

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Thanks, I like the sugar cube idea and I'll ask her to have a think about other hypo signs. We have tweaked the basal and bolus ratios quite a lot so I don't think they are the problem.....today's 1.3 was because she had to visit a chiropractor and we didn't appreciate how much the visit would affect her. In general I think she is just not engaged enough with diabetes....not testing enough and forgetting boluses and then needing to do big corrections.....just a bit frustrating really. She is just kinda fed up with the whole thing and I wish I could help her see that we can win this battle and get things under control . Thanks again for your help. Btw we live in Scotland.
 
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donnellysdogs

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@Ellies-mum

Your daughter sounds a lot like a friends daughter (@martina). They just want to be "normal" with friends.... And doing the same as others.

I so wish there was extra support available for children and their parents. It's tough nowadays. More so than 30+ years ago... We didn't have today's choices of foods etc.... Or activities. I had youth club and watching football match with a brother....

I think you parents have to lighten the load of children with T1 nowadays to enable them to feel normal with their friends...indoors would be brilliant if every child had a CGM and could be read by a parent and a remote bolus or jumping in with a nice treat for a hypo! But we have to run with the help we have...

Can I ask you and any other parents... Would it actually help your children to meet an "older T1" who has lived well and is happy? Would there be any benefit to hospitals to have volunteers like this for children struggling. Obviously volunteers would have their own stories and would be scrutinised to ensure we could give positives to struggling children.

I just wonder whether this is something that could be helpful? Or a buddy system perhaps with older T1's that can give encouragement? We all know the NHS is cash strapped.. But some people like me do things in the background trying to help others. Ie about 5 years ago I had a pancreatic cancer gentleman from this forum come and stay with us in Wales. It was a break for him and his family. He knew he would be safe with us as he could inject and eat and knew I was experienced with insulin, hypo's etc but could give him time to relax but to sort out his affairs... No cost to this gentleman and it was a honour to help....

Would there be anything that could help your daughter more than the NHS offers? That perhaps charity's or individual oldies could help with as volunteers?

I'm glad that you are posting and that perhaps help can be two way... I would love to know a way to help children/parents more and you are giving me prompts in my thinking.

I hope you can perhaps use the sugar cube idea.. I know that three sugar ciphers are normally enough for me if I'm above 3.0. Of course it doesn't have to be sugar cubes. Could be jelly babies in a container. The container just needs... "I'm hypo" written on it and if like me I never told anybody, ever.... Include "tell somebody"..... It is the best help I've ever been given to make others aware.

Thinking of you...
 

Erin

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Dear Ellies, hypos are very dangerous. When first dx'd my medical team switched from one type of diabetic drug to another because I had frequent hypos, but not with serious symptoms as I did as the years went by. So, if your daughter's doctor choosed the lower hypo or slower, and she eats an adequate amount before going to bed that might help.
 

Ellies-mum

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Thank you so much for your words of wisdom donnellysdogs. Indeed I think giving teenagers a positive role model who can provide positive guidance and advice would be fantastic. I know our hospital has meeting details for a parents group whose kids are type 1. I expect if you were able to go to a similar meeting then you'd be very welcome indeed. I just wish you lived nearer. Jane
 

donnellysdogs

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My last hospital have nothing for anybody! Even struggle getting T2's (only 20% of those invited) to attend courses. In a highly populated City I cannot see why its so dire here. I am glad to hear that you have something through your CCG that could help children....