Diabetes - DS has just been diagnosed ...

[Millie1]

Am hoping that parents of diabetic children will be able to give me lots of advice and words of wisdom on how to move forward. DS was diagnosed last week and is still in hospital being stablised - DH with him tonight - we're hoping he'll get home tomorrow. Still trying to get our heads around it and get used to the idea. It will mean some changes to our diet and the way we do things but nothing too radical, I hope. Healthier! I'd love advice about altering recipes, suggestions for snacks (after 5 days in hospital he won't even look at a digestive biscuit or toast!) and just any hints/tips I may find useful.

Thanks!

Hi Everyone

Hope your DS is feeling better Millie. Infection will push his levels up, it's cos your body is under strain and produces hormones such as adrenalin and glycogen which pushes your levels up. Pregnancy has the same effect - not that your DS will have to worry about that ever

Really hope his insulin can be sorted without you having to mix it yourselves. The needle and syringe isn't great, hurts much more. When i was in hosp i was allowed to inject my dad with saline and that helped me with the whole injection thing. He will get used to it though in time.

Didn't know your son had cealiac too Tangarine, that sure does make things tougher.

Hi all

Thanks for the book recommendation Tangarine. I'll check it out on Amazon.

DS is still struggling. On his second antibiotic, not eating and barely drinking today, ketones up, blood sugars low, was sick about an hour ago so now blood sugars even lower and ketones higher. Wouldn't drink anything after the vomit. Have a glass of sugary water ready and I guess we'll wake him in an hour and try to get some into him. Hospital have advised to give glucagon if he goes below 3 and isn't co-operating with us and then to bring him straight in. Hope to heavens we can keep his sugars high enough to avoid admission to hospital as that would really freak him out. So we're in for a(nother) long night of it.

Hi Millie,

How is your ds now? I hope you kept him out of hospital.

Hello Millie,

I'm really sorry to hear what you've been going through. I hope he's feeling better now and that you've getting something like decent control. You've had a bit of a baptism of fire.

Hi Tangarine ... we have thus far by the skin of our teeth. Friday night was spent getting up every 1.5 hrs to give him sugary water by syringe. He's still not eating or drinking very well - dipped to 2.8 today and refused to take anything - am ashamed to say that I gave him a good talking to and told him that if he didn't eat & drink for us, he would have to go back into hospital and be put on a drip! Felt really guilty taking the hard line with him but needs must. His sugars have been a bit better today but his insulin dose has been lowered a lot. Food-wise he is starting to pick at things but if we try to encourage him, he just goes mad and flies off the handle (too much focus on food, I think) so we're trying to stand back and see what happens. He was only 4.4 before supper and didn't have much then but we'll check him on the way to bed and see how things look.

Geez, what an essay. Thanks for asking!

Hi Spidermama - we cross-posted. Baptism of fire is putting it mildly!!

Don't feel bad about taking a hard line Millie. We've had to be quite upfront with ds at times. It's the truth and they need to know the importance of their regime. You can't really soften the reality too much or they just won;t take you seriously.

Mind you mine ds is a bit older than yours.

Syringing sugary water every couple of hours! Poor you. Well done too though and let's all get winter and winter bugs behind us for a few months eh?

Good luck Millie.

Are things any better today Millie?

My ds went to a party today and snaffled. Sadly there was no actual food there so he just snaffled as much sugary crap as he could get his hands on. I gave him three units of Novorapid there and he came home with a reading of 9. Not too bad, I thought. Then two hours later it had shot up to 27 .

I didn't think these sugary things would take so long to show up. I'm not sure whether I should have given more Novorapid or actively prevented him from eating sugary stuff thereby ruining the party for him.

No you did the right thing. It's a special occasion and i think it's good to let him relax his diet once in a while.

27 is pretty high! Maybe like you say he needed more novorapid. Did you test him at the party? The other thing is perhaps he's coming down with a cold or something.

I always find drinking loads of water helps when i'm high as it helps flush sugar away.

Spidermama, main thing is that he enjoyed the party! Have his blood sugars come down now? I don't know anything about using Novorapid but am sure you gave the right dose. Like you, I thought that sugary sweets would show up really quickly.

Thanks for asking Paddy. Hmmmm ... well, he is having shocking tantrums (and I mean baaad), ate a little breakfast, picked at lunch but went on strike at dinnertime. Sugars were okay this am, 3.something before lunch, 3.2 before dinner and low before supper (which he also refused to eat). I am, quite honestly, at the end of my tether with food and his not eating. Although Diabetic nurse said that the antibiotics will be putting him off food - but surely he must be hungry? Am going to let him go to playschool for a couple of hours tomorrow as I think he needs out of the house and I need a bit of a break too. Hopefully the company of other children will put him in better form and stimulate his appetite a bit.

BTW, does anyone know whether there is a formula for working out the carbs value of recipes?

Am off to bed now as still trying to catch up on 3 nights with little sleep!

Hi Millie and Spidermama,

SM - did he have ice-cream or anything else fatty? I find that ice-cream really pushes sugars up several hours later. We went out for lunch on Saturday and the same thing happened. Either it was the ice-cream, or the "diet" coke was fat coke.

Millie,

How did playschool go today? I hope you got a break and ds is eating a bit more. You were right to be firm with him, hard as it sounds.

For working out carb values for recipes (I guess you mean home made cakes, biscuits etc) you need to total up the whole amount (which you can do by working out from the back of the packet) and dividing by the number of servings (so it's easier to make cup cakes than a big cake and try to slice it into equal pieces).

Hi girls ... thanks for the advice on working out carb values, Tangarine.

Things much better here - we have had good blood glucose levels for the last couple of days and today he ate 3 meals & two snacks (clear plate at dinner!). Did playgroup yesterday and nursery for about 5 hours today - didn't want to go but settled well and was in fabulous form when he came home. Me? I will happily admit that after a very intense 4 (?) weeks, I really enjoyed having the house to myself for a few hours and getting stuck into housework!

Fantastic! Glad things are settling down and you are getting him back to his normal routines. I might have said this before, but when my ds was diagnosed I was told it would take a month for him to accept injections etc. I never thought he would, but it was true - by the end of the first month it was as though he couldn't remember life pre-diabetes. We've also had unusually good blood sugars the last couple of days.

Make sure you take some time for yourself as well as the housework .

Hey millie how r things?

Hi Millie,

I saw you on Mears' thread. How ar things in your house?

Hi Paddy & Tangarine - thanks for checking up on us! All is well at the moment although his blood sugars have crept up a little bit this week so we increased his insulin by half a unit last night and this morning. He went swimming (aka splashing) today for the first time with no ill effects and has now done a full week at nursery where he has been absolutely fine, although he was about half an hour late in getting his lunch on Friday and I wouldn't want that to become a habit! I go back to work (yikes) towards the end of next week and that'll be a real shock to the system, having had so many weeks off! I did have a bad night this week whilst flicking through recipe books looking for recipes for cakes/biscuits/traybakes etc and I just felt so sad for all the spontaniety he has lost, no stuffing himself with chocolate on Christmas morning, Easter eggs rationed, birthday parties carefully planned etc. Don't get me wrong, we're not big chocolate/sweet stuff eaters in our house but it's the innocence lost which gets me down!

Oh, on a techincal point, can I ask you a question please. Injections. Pinch skin, inject, release skin, count to ten ... and still a couple of drops coming out on the needle. Am I doing something wrong? Thanks!

Hi Millie

I was dxed when I was 18.

I think it's important to teach any child to eat healthily (not just those with DM), but I also think it's important to let a child be a child and enjoy Easter and Christmas.

I haven't read your whole thread (am going to now) , so I don't know what insulin regime your DC is on, but if you have some rapid-acting insulin (like novorapid or humalog) in the house your DC can still eat "normally" like everyone else on those special occassions - you just need to know the amount of carbs, and how much insulin your dc needs for say 10 grams, and inject the insulin accordingly.

These insulins are also really useful for bringing down highs quickly.

BTW, I am on a pump, it's attached to me all the time but I don't have to take injections, and only change the infusion site every 3 or 4 days. It's made life a lot more spontaneous. It is funded by the NHS.

All the best

hello all,
Millie I know exactly what you mean about the sponteniety. It's not just the thought you have to put in if he does want to stuff down some chocolate, it's the constant weighing and maintaining the regime, all day, every day.

My ds's moods are affected. I'm not sure if it's because he's angry about the condition or if it's actually a physical reaction to unpredictable blood sugar levels, but he gets very angry very quickly sometimes.

Hello MM22. I'm quite interested in the pump. Did it take you a while to master it? How do you feel about having it attached all the time? I know there are lots of children on the pump and everyone who's on the pumps seems to love them, but I can't help thinking it's nice to be free of any devices between injections.

Hi Spidermamma, I am sorry you, your son and the rest of the family are part of the club noone wants to be a member of!

You are right about the daily diabetes regime being unrelenting. A lot people without dm think the worst thing must be having to inject, but after not very long it just becomes part of your life. I find the worst thing is that if you want to do anything, or even just sit and do nothing! you have to think about what you just ate, how much "active" insulin you have still working...the time of month, time of day, etc, etc etc.

I got the pump a couple of months before my first pregnancy. I had pretty good control, but it wasn't considered tight enough for pregnancy, so my hospital lent me a pump till DS was 2 months old. My local PCT then agreed to fund one for me permanently.

I had known about pumps for a long time, and it seemed like the best way to control the diabetes, and the hospital I go to (Kings College Hospital in Denmark Hill) is one of the best centres for dm and preg and so it seemed like the way to go.

I know what you mean about being attached, but I was keen for the pump, and knew about the work it would take to keep it working well for me. I don't think it would be right for someone who didn't actually want one!

I know alot of people like being able to "forget" about their diabetes between injections, but even when I was on injections it was always in the back of my mind. I actually found freedom the first few times I went out with a pump, it was so nice just being able to take my meter out, and not worry about the other paraphernalia. Also it means I can sleep in (well as much as anyone can with 2 small children!), and I don't have to be back home at night by a particular time for the long acting shot (but of course you can always take pens with you, they are so convenient that way!)

Hope that helps, and all the best to you and your son,

Thanks mm22. I can see the benefits. I guess lack of finger prick tests would be a plus for my ds too. Also I want to get the best control possible as he developed it so young.

I'm glad you're enjoying the pump. It must be a revelation.

Hi Spidermama,

a pump is great, but you still have to do the blood sugar testing, at least 4 - 6 times a day. Because only short-acting is used, if there is a problem, things can get very nasty very quickly.

It's great because if I don't want to eat, I don't have to, and if I want to eat more, I just have to press the buttons.

I can see that it would be really useful for a child at school - wouldn't have to rely on a teacher / nurse to inject, if the child isn't old enough to do it for themselves. Also a child wouldn't feel quite so different not having to inject in front of friends.

Pumps are pretty resilient too, I have dropped mine many times and it's still not broken!

Please CAT me if you have any other questions.

All the best

Hi Spidermama & MM22

Spider ... do you weigh all your DS's meals or, at least, the carb element of them? We got a sheet from the dietician listing 'common' foods and the amount of carbs per serving, be it a tablespoon, a slice or a piece of fruit (or two). Is there an advantage to weighing? I'm a bit worried that we have become slack over the last week or so as his blood sugars are a tad high but his insulin was taken waaaay down when he was sick a couple of weeks back and, until Friday, hadn't been increased so I think the higher blood sugars are more to do with too little insulin. He got up this morning at 6.2, had a shockingly bad breakfast (maybe 2 exchanges), had a good snack, I thought too much but obviously not cos he was down to 3.4 by lunchtime. So he got about 100 mls sugary juice, tomato soup (maybe half bowl), slice of bread, petit filou and a Diabetes UK recipe oat biscuit and shot up to 10.2 or thereabouts where he remained for the rest of the day. I don't think he got too much after his hypo as it coincided with a mealtime but maybe he actually needs more insulin still in the morning - and to eat a better breakfast to counteract the rapid element of it. What a tale! What do you reckon?

MM2 - thanks for your advice! It's amazing how many people are dealing with this and hearing what other folk experience is really helpful . You've probably gathered that he's on Mixtard twice daily. We do have vials of rapid in the fridge for 'emergencies' but haven't had to use it yet so I've no idea how to work out a dose - I'm gathering that it's not only based on his blood sugar level but also carb intake? The pump sounds really good and maybe something DS will consider down the line when he's older but for now the poor mite has to persevere with injections.

Hi Millie,

sounds like he's doing really well, 3.4 might be a little bit low, but it's not too bad, and neither is 10.2. I would be happy with those readings!

To use a rapid acting as an "emergency" you need to know how much one (or even less of a unit) will bring him down. Trial and error will be the best indicator - take his bg, and if he's high, try injecting a small amount, and see what the effect is in say half an hour, one hour, and say 2 hours later. One unit will lower me about 4 mmol, but your DS may need more or less to bring him down by the same amount. Your diabetes team will probably be the best ones to talk to about finding out his "insulin sensitivity" - I would have thought that one unit would have a greater effect on a small child than an adult, so I would try only tiny amounts...and have your hypo cures to hand just in case he goes on to plummet. The information though would be really useful....

I don't weigh my food, but "eyeball" what I am eating. I've been carb counting for years so I can guess pretty well (not all the time though, yes I still go up and down.) In time you'll find that you'll all get better at guesstimating what he's eating so you won't need the scales so much.

All the best,

Hi Millie

Did your diabetes nurse give you a unit/carb ratio? Becasue what they can do with novorapid is tell you how many units you need to take to cover each 10g of carb.

When i was diagnosed back in the mid 1980s (!) diet was much stricter but even then the nurses said i was allowed a "day off" at Christmas and also New Year.

As for what he's lost, your DS is so young that he won't remember anything different. I have a friend who was diagnosed at 14 months whereas i was 9. Cos she can't remember ever being without diabetes she doesn't miss those days. But i'd be a liar if i said i didn't ever look back on those pre-D years.

But then someone else i know was 15 when diagnosed (a lad i teach) and that was even harder for him to adapt. They told him he'd never be able to drink which is complete rubbish!!!

About the injecting, so long as your keeping needle in for a few seconds you're doing it right.

MM22 - is it weird sleeping with the pump and does it ever get knocked. Right now i'm happy with basal bolus cos i can pretty much do what i want (i do a lot of bolusing i guess like someone on the pump does except i use a pen) but it is something i think about.