Hypo's & getting sleep

[Jen&Khaleb]

This is for the parents out there...

Anyone with young children getting plenty of sleep at night? Sometimes it is my own panic that gets me up to check but mostly it is because he does drop very suddenly sometimes. I've had 2 full nights of sleep in the last month and really want to find a way to get a few more. Lately I have had to give Khaleb a bottle at around 2am but if I lower his Levemir he ends up 15+ in the morning. Even the 100ml of milk can sometimes push him from 4 to double figures.

Khaleb is on Levemir (split dose with half unit pen) and Novorapid. Khaleb has been diabetic for 2 years and not honeymooning. We have had short periods of time where things have been going well but he keeps growing, getting more active and eating different foods.

Khaleb is also having the odd hypo of just under 4 a few times a month. Is this pretty common for kids or do other kids manage good figures without the odd low. They mainly come from activity but not necessarily during the exercise but anytime in the next 24 hours. Quite unpredictable.

I wonder if my problems are just related to Khaleb's age/size. I know quite a few other parents but their kids are either older or the younger kids have bsl's above 20 a lot of the time.

I wonder how many years the broken sleep is going to go on for. I'm sure it's sending my hair grey and putting wrinkles on my face to go with the black rings around my eyes. I might just be having a bad patch and he'll settle again but if anyone knew some secrets to getting more sleep I'd love to hear them. If you have food suggestions please keep in mind that Khaleb is still on a soft food diet so it would need to be something normally eaten off a spoon.

Thanks, Jen.

 

[suzi]

Hi Jen,
i can but sympathise and hope that as Khaleb grows your sleepless nights become a distant memory. For about 18months after Andrew was diagnosed we set up a baby monitor in his bedroom, and my sixth sense always kicked in and sleepless nights were few and far between, though it was never a deep sleep, but at least i wasn't in and out of bed twice a night, guess we were just lucky. Then we found Andews cat Fudge gave us peace of mind as she'd wake us if Andrew was a little low (unfortunatley she died last year) Now we find Andrew will come into us and say he's had a nightmare, which usually means he'll test low. So things do improve.
As for exercise, when kids run around, especially with Andrew he'll often throw a few lows the following day, and hot weather always guareentee a few hypos. What we need Jen are crystal balls, life certainly would be easier.
As for food, Andrew being coeliac its usually biscuits and milk, before bed he tests about 10. then has up to 20g of carbs, 18 units of Levemir and is always 5. something in the morning. In the days before Coeliac, weetabix always proved good before bed or a yoghurt and glass of milk. Everythings trial and error and its so frustrating sometimes.
Good luck Jen, hope all goes well, love to you both
Suzi x

 

[Jen&Khaleb]

Thanks Suzi, You are always a good pick-me-up when things start going a bit haywire. I did a bad thing and left Khaleb a bit high last night and got some sleep. I feel like a better functioning person this morning even if Khaleb did wake with a bs of 16. It is strange how your judgement gets clouded when you are so tired and even though I did the wrong thing last night I had to fix myself a bit to keep going.

I do hear Khaleb in the night and certainly can pick up on strange noises that indicate he is going low but I've had the odd night where he has dropped into the low 3's and sleeping very peacefully. He's been quite ill over the last couple of months and I have resorted to pulling him out of playgroup to get him well. He has really only just recovered and I will attempt going back to playgroup after the holidays.

I would love to get a pet and hope it was a capable animal as a hypo dog but this isn't really an option at the moment.

I had thought I had good control over his bs at night but I've had several nights where he has gone from 16 at 10pm to 3 by 2am and then other nights he has gone to bed at 12 and woken up in the 5's (but of course I have checked him once or twice in the night). I suppose I'll just have to return to experimentation and adjust what I can until things settle. I'm really caught between a rock and a hard place right now.

I usually give Khaleb a supper of either fruit yogurt or custard and cereal mix. I try and pick the lower GI options to get him through the night. I'd love him hooked up to an alarm to let me know when he was out of range and I could sleep peacefully. That crystal ball sounds like a good idea also.

Well, we are back on track this morning. Blood sugar back down to 6 and I don't expect to be confessing any more of my sins for a little while.

Thanks again, Jen.

 

[JimmyD]

Hi

We have been lucky and not had a night time hypo but I must admit I don't sleep as well as I used to, I do worry what is happening overnight.
My daughter goes to bed at 7pm and has tea at 5pm so it is guess work as taking a blood reading before supper does not help due to the short time between tea and bed. For supper she has dry cereal or ryvita only 10g carbs worth and 5.5 levemir. Total lottery on the waking blood reading!! I do check at night if she wakes or sounds unsettleted.
She does have plenty of hypos due to exercise, as she has cerbral palsy we do lots phyiso, swimming and horse riding and again the exercise sometimes gives her a hypo 4 hours after exercise is complete, again we are trying to get better understanding.
I find this all very hard but keep trying to get those magic numbers....

 

[SophiaW]

My daughter is 7 and sometimes she goes hypo during the night. Usually she will wake, and often will complain of having had a nightmare, this is often when she's low. Mostly she's okay during the night and wakes up with a slightly lower reading than what she went to bed with, I find nights easier to manage than day time. But in recent weeks she's had a high reading in the morning and I've woken several times during the night over the past week or so to take readings to work out what's going on. She's been going hypo around 3am which probably explains the higher readings in the mornings. She has been exercising more over recent weeks and as a result I've now dropped her night time Levemir to 2 units from 3 units. I'll need to keep checking over the next few nights but so far over the last few nights she's been okay with no hypos.

I think it's difficult with children, they exercise, eat and grow with little consistency. I find school days easier to manage because there's less temptation to snack inbetween meals and more routine to the day. Our H1bAc was 7 last time, it's usually now around 7 or 7.5 but we do get mild hypos quite regularly which are easily and quickly treated. I'm lucky now that my daughter can recognise the symptoms and alert me quite early, it was tough in the days when she wasn't able to tell me if she was feeling hypo.

 

[mcpound]

Hi Jen, I am having very similiar problems to you and can toatly sympathise. My son is 11 months old and was diagnosed 2 months ago. You posted some replys to my distraught posts at the time. Thanks once again for that. Im exhusted. My sons BS are all over the place and I actually feel at breaking point due to the lack of sleep.Our son had only just started sleeping through the night when he was diagnosed so its been a long 11 months!! As a bit of a diabetes novice I really cant offer any helpful advice. Henry has 20g of carbs via milk before bed but each night it has a totally different effect on him . Last week I was up between 12 - 4am 3 times in the week giving insulin because of his high bs and developing ketones really quickly. He is on a pump so at least I can give extra insulin without waking him. I do hope it gets easier for you in time. Lack of sleep can really play havoc woth your life especially as you have extra demands to deal with. Take care.xx

 

[Jen&Khaleb]

Thanks for the reply. I tend to only have to get up once in the night (sometimes twice) but after 2 years of this it can get draining. My record for continuous nights of sleep is 9 since Khaleb has had diabetes. I am a single parent (Khaleb's dad left when he was 10wks old) and don't have any help or been able to enrol Khaleb in daycare. I may have to wave the discrimination flag to get some sort of care but am resistant to do this for fear of the kind of care he would receive. Khaleb seems to have settled a little and I'm back to having good days all in single figures (above 4) but his nights are still a bit unpredictable. Another parent mentioned the fact that there isn't enough time between dinner and bed time to get the right amount of supper and this seems to be a very true fact. His bolus from dinner is still working but it is hard to tell for how much longer.

Have you had your first Hba1c yet? I did find that even with fairly average control when Khaleb was little the overall effect wasn't too bad. I got better at knowing which direction his blood sugar was going with time, because it is never stable in children, and is always going either up or down. This made it easier to have a life and do normal jobs and activities. Are you going out much? I didn't for a while after diagnosis but got better at managing and carrying all the right stuff. One day I did forget my meter and went into a chemist and bought another while I was out.

Hope things settle a bit for you but it is still early days for you. How do you feel your son is coping with the change? I did find that Khaleb adapted quickly and still just hands over his finger and has really started to associate his diabetes treatment with food.

All the best, Jen.

 

[jimmyt1988]

Ah wow! Good job guys!

You sound like you are really on top of things and those sleepless nights sound sucky but whilst you are being so vigilant and down to earth you are controlling the diabetes like a bunch of pro's.

*high five* etc.

 

[mcpound]

Seriously Jen, the more I read about your situation the more I admire you. I spent a bit of time this week feeling sorry for myself and how things seem to be turning out but I really find you an inspiration. I wish I lived near you so we could meet up but I am in the U.K. I am immigrating to Oz maybe next year ( just waiting for the visa decision!!) so you never know.

You are so right about the gap between dinner and bedtime. I am finding the active insulin issue a bit of a problem. I am now trying to be fairly strict on when he has his last meal and putting him to bed with a bottle of milk no earlier than 3 hours later to try and minimize this. This week it has been exercise that has been the problem. Henrys bs is plummetting after dinner because he is absolutely manic when his dad gets. The effect lasts way into the night but trying to treat a hypo after he has been alseep is a nightmare. He gets so upset if I wake him to try and give him more milk. I have tried putting hypostop gel on his dummy and giving it him while he is stll asleep ( his poor teeth!!) but he will only allow me to do that a few times then his mouth is clamped shut. I think I am going to try reducing his insulin by half with his dinner if I know he will be having a good crawl before bed and see how that goes.

In himself Henry is such a happy little boy. He is 11 months and I am so proud of how he has adapted but it does upset me when I have to wake him up at times or take his Bs constantly.

Im sorry you have had problems with childcare. You would have every right to complain about discrimination but as you said, the fact is you wouldnt want Khalb to go to such a place anyway. With diabetes on the increase it is a disgrace that childcare is not moving with the times and preparing it. I had found somewhere that were very keen on Henry going for 1 day a week however I have decided to leave it for a while as I feel he needs one to one care whilst his bs are so unstable. I have to go back to work in 3 weeks. Luckily my boss has agreed to just one day a week at first. My mother in law is to have him and I am DREADING it. I think I would feel so guilty if he had a hypo and I wasnt there. I will just have to see how it goes. I think your child diabetes becomes very much instinctive to a parent and it is difficult to hand the responsibility over to someone else.

Im so impressed in how you are managing Khalebs bs. Above 4 is brilliant. We are having our first Hb1ac next month and I can just image how awful it will be. Will just have to keep trying to get it better for next time.
Take care Jen. You should be so proud of what a fantastic Mum you are to Khaleb.xx

 

[Jen&Khaleb]

I know what you mean about the overactivity of an evening. For some reason Khaleb is really switched on after dinner and does a good part of his learning in those few hours before bed. If I ever want to teach him something new I always try to do it in the evening when he is far more receptive. I also have my sister coming around and playing loud games most evenings. Khaleb only learnt to walk late last year (just before he turned 2) so I can't say I had too many exercise bs drops before then. He still isn't able to run so I suppose that will be next.

The only 2 real diet changes I made was getting him from formula to cows milk and never giving him over-ripe bananas. Cows milk made life so much easier as he was having the formula between meals and it was pushing his bs up into the 20's everytime. In those days I quite often had the meter reading 'HI" but I actually can't remember the last time this has happened so it must of been quite some time ago. Even with this poor management Khaleb's Hba1C was 8.7 but it is always around the 7 mark these days. Khaleb tends to sleep through me testing him in the night and even if I have to give him a bottle in the night. I have disolved castor sugar in his bottle if he has been low in the night. I'm reluctant to wean him because of this convenience. Using a syringe with some diluted glucose syrup (from the cooking aisle of the supermarket) mixed with a bit of fruit juice is also a good way to treat a hypo just like giving a dose of medicine. I only need to dilute about a quarter of a teaspoon for a fast bs rise.

I can understand your concern about going back to work and leaving the responsibility of Henry's bs with another. I can nearly always tell when Khaleb is going low but I would advise someone else to test more often and be safe rather than sorry. I would just be happy for someone to try even if it didn't work out. It is very restrictive to not have care. If it was ever really needed it would be nice to know it was there. My sister tries to help out but she has a full time job. I also try and get her to do some finger pricks and needles from time to time. I sometimes get my 14 year old son to do a few also. I only do this so Khaleb doesn't think that I am the only person allowed to do these things. I hope you have good communication with your Mother-in-law and she has learnt all she needs to know so you feel even a little bit comfortable being away.

If you end up having the opportunity to move to Australia where would you be likely to settle?

Anyway, all the best and hope your first day back at work doesn't give you a panic attack. Take some deep breaths and try to live a normal life. Jen Xx