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 Millie,
The basal bolus system is when you give two injections of very low dosage insulin which covers the 24 hours of the day, then give more injections just before food as and when you/they eat. It involved fairly complicated calculations about carbs as far as I know so that you know what dose to give yourself. I think it's too early for your ds and probably mine too. I'm just at the early stages of considering it but I would imagine it'll be a year or so before we do it.

As for parties, yes I fill him up with healthy slow release carbs before hand. In the early days I went to parties with him and did blood tests and gave fast acting insulin if required. I found it tended to work out well though because although he's eating sugary stuff, he's also running around in excitment. Usually it's just for two hours so you could always deal with any highs at the end.

I think it's really important for them to be able to be kids and fit in with all the others so that any resentment of their condition can be minimised.

If I were you I would go to any parties with him. Not least because if you're going to leave him in the care of other adults you need to explain to them what a hypo is and how to treat it. I think Diabetes UK has a good print out you can give to other people who'll be caring for you ds like teachers or other parents.

I forgot to say about the basal bolus system, you give two slow release injections a day and the others are quick release ones, so you're mimicking the pancreas more acurately.

That said, my ds's readings are pretty stable on the mixtard at the moment, but I use Novo rapid more freely than I used to as well.

You could always give a couple of units of fast acting insulin at a party. It's difficult because you don't want to give mixed messages either. Sometimes I say have what you want within reason (of course at 7 he is on his own at parties) so long as you do a reading and have insulin on return. He has actually learnt to be quite good and not go crazy with the sweet stuff - quite hard for someone who loved his food and has a very sweet tooth - I think you just get less addicted as well if you don't have so much.

Also my ds has learnt how horrible he feels if he overdoes things.

Going for teas is a problem as well (again you won't be there yet) but have to be sure the parent doesn't mind and that they are comfortable with a child injecting etc. - so far though everyone has been fantastic.

Basal bolus is one long lasting insulin for overnight and through the day (we do at bedtime) - ours is levemir and then novorapid with each meal (and if you need extra). We originally started on 3 so he didn't have to inject at school, but moved to 4 over the summer when his control was really bad and I felt he was ready to do it at school. It means he can eat much more of what he wants and if he does go high then it's not for long. Not really a good idea for your ds until he is happier with the injections and probably a bit older.

Where abouts are you? We were in London originally where they were keener on more injections. Now we are in Gloucestershire which is not quite so "advanced" but friendlier, more personal team (and we can park in the car park!). Also our school is very small, so I am much happier with the environment for him.

I bet you are spending a lot of time reading labels at supermarkets - you realise what rubbish is in some stuff. It's no bad thing from that point of view and will make you all healthier.

I have put my ds down for the diabetic camp this summer in Southampton - he's never really been away from home before - not sure I'll be able to take him but I am sure it will do us all good to have a break and for him to get some independence.

Hi Everyone

Something that i've been thinking about is going on the pump - that gets rid of the need for injections altogether! At the minute i'm happy with the basal bolus set up (take levemir at night, novorapid at meal times and extra novorapid if i overdo it on the sweet stuff). As Spidermama says basal bolus mimicks the pancreas better than 2 injections of mixed. But they say that the pump does an even better job.

A lot of the kids at our school who have diabetes are on the pump. But i think it's a bit of a postcode lottery TBH. My diabetes team said i could have one as i have hypo unawareness (this is the only complication i have after 20 years of diabetes though). But i'm not sure i fancy being attatched to something all day if you see what i mean.

The kids who have them say that they're great and that you have a lot of freedom with diet etc. Has anyone heard anything about the pump?

There is little talk of pumps in my region, but control is supposed to be so much better. My SIL (who has had diabetes since around 11)is in her 40s and was offered one (in Kent) for the same reasons as you, Paddy. I think (but may be wrong) that you have to test more which might be off putting for a little one. I was also slighty concerned about the possibility of infections. I think most kids in the US have them, but I have not met anyone here. Your HBAC1s are supposed to be so much better. I would like to find out more.

I have suggested that I buy one, and our diabetic nurse said that someone else did that and they coughed up the funding at the last minute. Normally they are given as a last resort. All comes down to funding I guess.

Millie - have you been given the pens with half units? We only found out about them recently (we had the completely disposable pens) and they have made a big difference in control. The cartridges are more fiddly and heavier, but the action is so much smoother as well.

Yes paddy people seem to love their pumps don't they. At the family support weekend a teenager showed us his and there was a sharp intake of breath because of all the bruises from dotted around all the site marks. They were quite pronounced. But he said it was fine and he loved his pump.

I think they're hard to get hold of and they wouldn't advise them for the young ones because they're so active and liable to bash them.

We also have a pen with half units lisaHy. It's good for tweaking doses, especially when they're very young and small adjustments make a bigger difference, BUT the actual injection takes a bit longer.

Hi everyone - thanks for the explanations of the basal bolus system. Definitely something to think about for the future, too young at the moment and we all need time to get used to this and learn to manage it.

Yep, reading labels - until now have just read for nut content but now it's carbs & sugars as well ... sugar contents can be real eyeopeners.

Having real problems getting him to eat today (tantrums at lunch & dinner and not much eaten) but sugars are fine - a bit high this evening (13 or thereabouts) so called hospital and we took his dose up by half a unit (yes, have the Novapen with the half unit doses - seems fine but haven't got anything to compare it to). Back to see consultant tomorrow but don't expect any surprises.

Hey Millie
Did the doctors mention the "honeymoon" period?

Oh yes, sure did Paddyclamp ... and I think we're bang in the middle of it. Blood sugars are nearly 20 at the minute - yikes! Saw consultant this am who increased dose to 2.5 units tonight. Called paed reg in light of this evening's level but he said to leave it at 2.5. So we'll see.

millie, was it you on here last week about your ds drinking loads?

or praps that was someone else

Hi Millie - hope you're ds is back to normal this am. My ds was 22 at tea last night - he does karate after school and I think it was the snacking before and after. I remember freaking at a reading of 14 a few weeks after diagnosis, so 20 will be really worrying for you - however quite a 'normal' think to happen. You can always give a shot of novorapid as well as his bedtime one to bring it down, but probably best to follow the consultants advice until you are fully confident.

I was lucky that my ds was fairly stable for a long time because we caught him before he was very ill. No hypos for months. It sounds like you won't have much of a honeymoon period.

Hope your weekend is not too stressful. Remember to look after yourself. It's such a big responsibility for the Mum I think. On the other hand, while I threw myself into the practicalities my dh was really upset and blamed himself (because his sister is my SIL with type 1). It could just as easily come from me, or may not be genetic at all.

Hey Millie hope your DS is back to normal now. It'll take time for him to completely stabalize. I still get readings as high as 20 now after all these years! But it sounds like your doin a great job, and coping really well. My mum went to pieces!

I can see where your DH is coming from Lisa - i always worry about DS and DD getting diabetes cos i'd feel guilty it was my fault that i'd passed it on. I always get the blood machine out as soon as one of them seeems to be drinking more than normal or is lethargic! But in my case it wasn't genetic, just random. I don't think it'll be that long before they find a cure TBH and treatments are always improving

I know what you mean about the guilt thing. It's ridiculous really though isn't it?

Luckily for me, both dh and I have a person in our families with type one so we're both or neither of us to blame.

Hi all ... have had a relatively good couple of days (touch wood) - hit 10 twice today but all in all, not too bad. Main problem is trying to get enough carbs into him. We're pasta-ed out and he is not a potato eater! Any ideas for lunches bar sandwiches?

I wish we did know what causes it ... in our case we're convinced that a bout of scarlet fever before Christmas triggered something ... but who knows!

Oh - one last question - food related, of course. We're having a lot of trouble finding a yogurt, low in sugars, that the children will eat. Have tried a few diet yogurts but if they have 'bits' in them, they're rejected.

Thanks!

You might have a point with the scarlet fever. I had mumps a few weeks before being diagnosed (remember when kids used to get mumps?!!) and they do reckon it can be triggered by an infection or a virus. Guess it's all ifs and buts though.

Must admit i feel pasta-d out some days! Does he eat rice? Lentils are good (but can't say as i like them!). What about pitta bread or tortilla wraps as an alternative to butties?

Was he 10 soon after food? If so that's really not bad and is a sign you're getting the carbs into him!

Does your DS go to nursery?

Hi Millie1 and other Mums of children with diabetes (Spidermama I often wonder how you are getting on, as I first posted on Mumsnet on your diagnosis thread). My son is 9 and has diabetes since he was 5. He has been on a pump since November 2005, having started on 2 injections a day and moved on to basal bolus. When we were on the two injections a day we were taught to mix the short and long acting ourselves so we could vary the proportions depending on his readings. My DS used to hate injections, but we were told on diaignosis that after a month he wouldn't remember not having diabetes and would get used to them - and he did.

The pump is very hard work, at least to start with, but has made a big difference to DS's quality of life and he would not give it back now.

There's a really good website called Children with Diabetes. It's based in the US, but there are UK pages and there's a very active UK parents email group (over one hundred families ranging from year old babies to late teens). It has been a huge souce of advice and support for me as there is always someone with a child the same age or a bit older who has been through the same thing before. It's also a good place to vent as everyone understands how you feel. About 20 of us families are all going camping together in the Cotswolds this May Bank Holiday so that the kids are with other children with diabetes and for once won't be in the minority.

Wow tangerine that camping trip sounds lovely. I think it's great for them to mix with other kids with diabetes because they can feel pretty lonely and different. My ds loved being amongst others at the support weekend. Also I've been out a couple of times with a local group and it was brilliant. People all brought there siblings and I saw the others saying to my ds 'Ok, you have to guess which of us has diabetes'. Then they were looking at each others monitors. It's such a bonding thing that they got on well straight away.

I'm interested in the pump, but perhaps not yet. Though I'm going to shut up about the basal bolus system for now. I imagined I was doing subtle mentions of it every now and then but ds said to me yesterday, 'Stop going on about the basal bolus system'.

I will have a look at the Children With Diabetes website as I'm very into the social side of things.

Flavoured yoghurts are pretty much all high in sugar. How about plain yoghurt (my ds has soya as he's dairy intolerance) with yogurt in it or mashed banana and other fruit. I also put granola (crunchy oat cereal) on top. It's sweet, yes, but it also is oaty so you get your slow release carbs.

I also make smoothies with oats and ground almonds in them. Or soaked cashew nuts. (I know your ds doesn't do nuts though Millie) but you can also soak stuff like dried apricots, any dried fruit, overnight and put it all in the blender, along with oats, banana and apple for sweetness and milk or yoghurt to make gorgeous thick smoothies.

Also we have oatcakes. We couldn't survive without them. You get all sorts too. They're great to carry around (I have packets of them in all my bags and ds has them in his school hypo kit). Nairns do plain ones, ginger ones and mixed berry ones which are slightly sweet. MY ds will happily munch on the plain ones.

Hi all
Interesting about the website tangarine - I have looked at this briefly before and couldn't find my way into the UK email group - must have another go.

Mille - we often have the Shape yoghurts (artificial sweeteners though) but they do have lumps. What about sthg like Rachels Little Ones (name may be slightly different) - they are smooth and have no added sugar, but obviously contain fruit sugars.

Re carbs - what about bagels. Rice cakes are good for a snack when they are nagging for something at the wrong time.

Hi LisaHy and Spidermama,

To join the email group you need to go to the CWD homepage, scroll about half way down and click on the Union Jack flag to sign up. If you have a problem contact me and I will put you in touch with the person who can sign you up. We are a friendly lot!

Good luck and see you on CWD sometime!

Spidermama,

There are lots of discussions on CWD at the moment about schools and how helpful (or not) they are with basal bolus regimes because of the need for the lunchtime injection. At one stage we did a version of basal bolus that didn't need a lunch time shot by using Insulatard as the basal - its longer action and mid-morning peak covered a morning snack and lunch - with novorapid at breakfast and tea, and another injection of insulatard at suppertime. But as different regimes suit different children it might not suit your son. If his control and HbA1cs are OK there's no point introducing an extra injection - they will be having enough over the years.

That's a great website Tangerine ... shall have to spend a bit more time reading it

Spidermama - thanks for the tip re smoothies - something else to try. DS tried garibaldi biscuits today and liked them. I spent about 45 mins making an oat based biscuit which has a date & apricot filling (from Diabetes cookbook) which he didn't like ... but DH and i do!

LisaHy - I think you've just saved my life! Now all I need to do is see if we can get the Rachel's yogurts at our local(ish) Sainsburys/Tesco. Woohoo! Our boys looooove Yeo Valley Fruit Tumbles which do have added sugar. I e-mailed the company today and within an hour had a phonecall from a customer service advisor, who not only checked out how much sugar they contain, but also had lengthy discussions with their nutritionist and called back again with information on other yogurts they produce. I was soo impressed with their customer service!

Am off to bed with a yogurt-induced smile on my face!!

Yes - looks interesting. I've got all the e-mails tumbling into a filter - this diabetes thing is a full time occupation isn't it? The threads about pumps are a completely different language - either that or my "guessing" with the basal bolus routine is completely out of order!

Must go to bed. Expect to be woken in the night. Ds' blood sugar shot up to 20 at bedtime for no reason at all - gave some extra novorapid as well as levemir - he has a sprained ankle so gave ibuprofen, but it's sugar free - wouldn't be that would it? He'll either come crashing down in the night or stay high and wet the bed knowing my luck. (I am just coming down with a cold and feel horrible and sorry for myself....)

I have also make loads of things that ds2 hates - he detests garibaldis and the nairns - but dh loves them - oh well.

Millie you sound like you're doing so well. Well done to you. He's a lucky boy.

tangerine I will be looking out that website. I'm starved of conversation about diabetes.

LisaHy he hates Garibaldies and Nairns. Bad luck! I don't s'pose he'd go for a fig roll would he? And let's face it who would?

They all love fig rolls! I hate them, being more of a kitkat girl.

Been looking at the CWD messages (as I am imagining you are Spidermama) and I am struck by a)other conditions the kids have which is a bit scary and b)more than anything how all the kids seem to be on pumps!!

Do you think this is something we should be fighting for Spidermama? - although it sounds a bit complicated - perhaps the terminology is just a bit off putting.

Also a lot about the DLA - we get the middle rate, which I am content with - but why don't they just give it to kids with diabetes once diagnosed - what is the point of making us jump through hoops - apart from the obvious aim of putting people off and saving money.

Rant over.