Extremely fearful of hypos :-((

[esselle]

Hi all

I have only just joined this forum and just thought it might help me if I could put my fears into words, so to speak, as presently I am driving myself mad by over-thinking and feeling so alone with my fears

My little boy (who is 10 yrs old tomorrow), was diagnosed with Type 1 two years ago. Initially I took his diagnosis very well and learnt all I could about his condition, the highs, the lows, the implications, both short and long term, for my little chap. We struggled a little with unstable readings for quite some time after initial diagnosis, but the last few months have seen a great improvement. We test his bloody sugars approx 5 times every day and he has short acting insulin to cover his food intake (Humalog) and also Lantus as his basal dose (evenings). However, because I am working so hard to keep his readings between 4-8mmols, I have started to become more conscious of hypos. My son usually gets what he describes as "weak legs" when he is low, but this is not always the case...

Anyway, I do admittedly read a lot on his condition, and (maybe stupidly) caught sight a week or so ago on a thread about "dead in bed" syndrome associated with Type 1 diabetes and ever since this has become all-consuming I understand that this is probably rare, but I am terrified! I think it is also now starting to have a slightly negative impact on the levels I send my son to bed with, as I am so frightened that he will hypo in the night and not wake up that I dare not send him to bed lower than about 9!!

Am I being silly? I can't really go on this way can I?

 

[cugila]

No......you are not being silly. Just a worried Mom....someone who cares.

Personally I think what you are doing is fine. Best to keep bedtime levels a bit higher so that the night isn't punctuated by hypo's. Many parents test during the night as well, might be something you could do. Allay your fears.

All I will say is that you can frighten yourself silly surfing the net........for no good reason. You are aware of it and that is really all you need to know. The ones who should be frightened are those who frequently hypo and have no awareness, who never test before bed etc.

Do what you do, discuss your fears with your HCP's and try not to worry too much......you will make yourself ill.

 

[esselle]

Thank you I just want to keep him safe. His diabetes nurse has always drummed it into us that we must be more careful to avoid HIGH readings and that hypos are rarely dangerous, but you know what it's like when you're a mum, just programmed to worry i guess!

I do occasionally test him about 2 or 3am in the morning, but try to leave it to a weekend when he doesnt have to be up for school, as he ALWAYS wakes, however quiet and gentle I try to be! lol

I just wish I could take this horrible disease away from him

 

[cugila]

I understand even though I do not have a son who is Diabetic. When your Nurse talks about high numbers the odd reading above target levels is fine, just try to avoid them. Do you know what your agreed target levels are ?

If the numbers are high and ketones are high or moderate that is serious and needs urgent attention.

While hypos are as you say rarely dangerous they should be avoided, hence the term 4 is the floor. Too low, too often and you can lose hypo awareness and while a mild hypo is very quickly treatable if not dealt with it can quickly become an issue which for a T1 can lead to needing medical intervention. Prevent this by making sure your target levels avoid anything below 4 and don't worry too much if they go up to the levels you quote.

Target levels can vary in Adults and children but in general for a 10yr old T1 they should be as follows :
Fasting (waking).........between 4 - 8 mmol/l.
2 hrs after meals........ keep under 10 mmol/l

 

[esselle]

Yes, they are the ranges we strive for - doesn't always work, but the last time his diabetes checked his readings in his diary she was happy. They are not always within range, but I do try my very very best to make sure they are as close as possible, but like I say, I tend to let them get as high as even 12 before he goes to bed through fear

 

[cugila]

That all sounds good. Everybody gets the odd 'blip' every now and then......so long as the overall control is good try not to worry too much. Easier said than done I know.

You and your Son are doing well and you will both be fine.

Hopefully some of the Mom's will see this a bit later and re-assure you as well.

 

[esselle]

Thank you cugila I really appreciate your words of encouragement

 

[Jen&Khaleb]

Hi,

I think we are all a bit fearful that our kids will have a severe hypo. I mixed up Khaleb's long and short acting insulin once (might have been twice) but luckily noticed my error. I can think of other times that I have heard Khaleb in bed and felt that things weren't right and checked him to find him hypo. I think I've learnt to trust my instincts. I do a fair bit of checking at 2am or so also. I quite often catch Khaleb in the low 4's just by looking at him.

There are many more stories of those who have been hypo and recovered by themselves enough to seek help. Stories of people who have raided the cupboard or fridge in the night and wake up with the meter beside them and not remember what they did. Stories of help arriving when needed.

As time goes by I'm sure the equipment with pumps and CGM's will take a lot of this stress away. My plan is to get a dog and try to hypo train it but that will have to wait until later this year. If I can get one that is already trained that would be even better but I don't think Khaleb has enough hypos to qualify. He hasn't been under 3.4 in the last month so I'm pretty happy with that. I'd rather he was a little high than low. I generally can keep Khaleb between 4 and 10.5 but he strays occassionally.

How does your son feel about his diabetes and hypos? Is he quick to treat a hypo if he feels his legs are weak or has any other symptoms? Does he wake in the night if he is hypo?

 

[donnellysdogs]

I agree with previous posts about everything.

I thnk you are doing a fantastic job of looking after your son and for understanding how the diabetes works.

Personally, when I was diagnosed 35 years ago, I was just told that i WOULD get complications...wrong, so far none. I was never informed of 'dead in bed' syndrome.' To be quite honest, I have only hear of that syndorme happening in the past 6 months...... I personally would want to see a level between 6 and 8 before going to bed, and would hope to wake up to a level of the same.

To be quite honest, I don't think it is easy to achieve. My levels always rose about 10 within an hour of waking. It has only been my pump that has stabilised this to being what I call normal of going to bed at a levels of about 6 and remaining at those levels all night and more importantly the hour after I get up is now static.

It is very hard to get the night time levels right. I honestly do not envy you or your son, as it is so very hard. I always used to have the attitude that at least at night I am guaranteed to have help from my husband if I go hypo.

I think you are managing the diabetes so very well, I personally have never seen in any paper or any diabetic site of someone dying drom death in bed syndrome. I would really put this to the back of your mind. The treatment of us diabetics ios getting so much better, I am sure that your son will have an absolute fantastic long life, especially with such a caring and concerned mum....best wishes to you both....
Sharon

 

[esselle]

Thank you Jen and Sharon so much for your kind words. It is so nice to speak with other mums who must feel the fears i do from time to time. I love my son so much that my fears make me feel physically sick sometimes. My son DOES understand the importance of acting on feeling of hypo quickly and always does so - there are however occasions when he doesn't feel his 'weak legs' but luckily he does test around 5-6 times daily so we do tend to catch lows before they become a real problem, but its the night times that scare me most, as since he has been diagnosed he has not once woken complaining of a hypo, yet I am sure he must have them from time to time? Anyway, I have decided to switch his Lantus from late evening to mornings - maybe this will help too? :?

 

[donnellysdogs]

I was on lantus, befor pump. I went from late evening to early evening, to mornings and then split my dose mornings and evenings. This did get rid of my night hypo's and my night levels were good therafter, however...and this is probably just me, not everyone....I then had daytime hypo's......

Your son is very young, and you are very obviously a very caring mum but have you discussed the possibility of a pump? It has enabled me to get my life back in many ways. It has totally eliminated my fear of hypo's. Yes, initially they are hard work (I've only been pumping 5 months) and they say it takes 6-8 months to get well used to, but my levels came good within weeks, thanks to the help of a fellow pumper here that phoned me everyday, and still continues to phone me and chat.....

I hope that you may get the levels that you are wanting with changing the lantus dose timings, but please be aware that it may just shift the times of problems.

I think that you and other parents on this website are so good at managing your childrens diabetes. Diabetes whetherin childhood or as adults will always have blips along the way, but the best thing to do is what you are doing, and boy, this forum helps.....

 

[esselle]

Thank you and yes, I am actually now very keen on the idea of a pump for my son, as I have read that they eliminate a good percentage of hypos? However, my son is not so keen, so i think he needs to be brought round to the idea before they will consider him for one? He doesnt like the idea of having something 'stuck' to him the whole time, as inbetween injections currently he feels 'normal' - if you understand what i mean?

 

[donnellysdogs]

Totally understand what your son means about something stuck to him all the time.

I admit that this is probably the worst thing about it. For example I have fibromyalgia and go for weekly massages, and I now have to add additional time on before and after appt to take set out and put new set in, having had one set rip out of me during the massage. I also try to time some baths around taking the pump and sets out, so I can have an hour of freedom.

However saying that, I wear it on my arm, and from the moment I load the cartridge up to the moments that I take off for my massages or baths I really do not know that it is there.

I now use rapid d sets and they really are the smallest sets and never interfere with me doing anything or wearing anything (except the massage and baths. The benefits to my bloods and stabilising my hypo's have been huge, but with children I totally agree that they have a lot more to contend with, than us 'oldies' with them.

I think that Lily has adjusted well according to Harry's postings, but would find it interesting to hear what she really thinks about wearing it all the time. It would be an interesting posting to make.....one from children as to what they really think about wearing the pump all the time.....

It may be that your son will be able to manage without a pump and hopefully his levels will stabilise. It has got to be the hardest thing for parents trying to do their best for parents with diabetes, children are hard enough without having diabetes.....