Hello

[fencesitter]

Hi everyone
My son William was diagnosed in March, in the middle of a health crisis (he has lymphoedema - LE - in his legs). He was being treated for suspected cellulitis, on IV antibiotics for weeks. Then all the thirst, going to the loo etc and bang the type 1 diagnosis. I was really devastated, as people with LE already have trouble with infection. Anyway, to cut a long story short, he turns out to have some kind of benign growth which is still not properly diagnosed. But the pain has got much better, he is back at school and managing his diabetes pretty well on MDI. Can't use his legs for jabs though!
It all seemed really dire at first, but he has been out with his friends, gone camping for 4 days (major anxiety for me, but he did just fine) and is set to keep his place at music school in september (more anxiety 🙄). He does get quite high spikes after meals, but mostly things are fine. He is having a really strong honeymoon right now, only using a unit or two with each meal and 4 of Lantus at night.
Anyway, I'll stop now but I'm looking forward to getting to know you all!! A few months ago I really thought I'd never smile again but life goes on and my son is determined to get on with life no matter what! 🙂
Catherine

 

[Northerner]

Hi Catherine, welcome to the forum 🙂 Good to hear that he has been coping with things well and not letting it rule his life 🙂 Have you considered varying the injection times before eating to see if this helps with the post-meal spikes? I find that injecting 15 minutes prior to eating helps the insulin peak to match the food peak more closely, but it is very much trial and error.

We have some lovely, supportive parents here, so please feel free to ask any questions. If you don't already have a copy I'd recommend Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas as an excellent reference on all things Type 1, plus there is a great group of parents to be found at Children with Diabetes - many of the people there are members here as well.

I look forward to hearing more from you 🙂

 

[fencesitter]

Thanks for your reply! That sounds like a good idea. He does tend to inject after meals so he knows how many carbs he's had, but we could try to calculate in advance. He mostly eats everything on his plate, given that he's a growing teenager (14 on Thursday ) We will give it a whirl.
I was wondering whether it had something to do with being keen on carbs - I've lurked on other forums there are quite a few low carbers who find it really helps with spikes, but I don't think that would be the right diet for William just now. btw, he does go right back down again so he's at a good level directly before meals, first thing in the morning and so on.
We haven't had any carb counting lessons but have read that really good book by Ragnar Hamas and have a copy of 'carbs and cals' - the one with the pictures, together with some tables. Maybe we need to get our heads round GI/fats and so on as well as carbs? But mostly I want to back off a bit right now and let him get used to it all without me breathing down his neck ...
Would also like to get him on a DAFNE course at some point, but maybe he's a bit young for that? I don't think it's on offer here anyway (Buckingham - we go to Milton Keynes hospital). Anyway, something for the future.
Thanks again
Catherine

 

[Northerner]

I was the same as him - I would nearly always be back in range before my next meal, but could go up to double figures an hour or so after eating. It does depend on what you are eating, of course, which is why there is a lot of trial and error involved - things like fat in the meal and injection site absorbtion can affect when the food is peaking. I'm careful not to inject too long before my food is ready if my levels are on the low side beforehand, plus of course there is the difficulty that you may not eat everything you planned to which can then lead to topping up with jelly babies!

If you'd like to go through carb counting, there is an online course you can do (I beleive it was designed by the DAFNE people). It's free and you can take up to two years after registering to complete it:

http://www.bdec-e-learning.com/

I don't think low-carbing is suitable for a growing boy. As long as he is not eating huge quantities then he should be able to inject for them with good success. Might be worth totting up how much he gets through in a day, just to give you an idea of what he is consuming at the moment. I personally favour the GL Diet approach, it gives a varied diet choice with slow release of glucose to help keep levels stable - just healthy eating really, but with an eye on the diabetes aspect, for example some fruit may be healthy generally, but very fast-acting on the blood sugars so you are better off finding an alternative.

 

[Copepod]

Welcome Will'sMum and Will.

I'm pretty sure that DAFNE is only offered to adults, but not sure whether the minimum age is 16 or 18. It's definitely only offered to those past a minimum of 1 year from diagnosis, as insulin rations are a bit random during honeymoon period. Some places offer carb counting courses to parents and teenagers, but even as an adult living in an area that does run DAFNE, I'm still on waiting list, after about 5 years! However, online course is good.

Great to hear that he's enjoying life - camping, music school etc - just what he should be doing, controlling his diabetes, not letting it control him.

 

[trophywench]

Hi Willsmum

Just a thought, there is an on-line carb-counting course available, kids like internet based stuff don't they? LOL

http://www.bdec-e-learning.com/

BDEC is Bournemouth Diabetes and Endocrinology Centre, and they are a leading light in the UK diabetic world.

http://213.106.147.101/bdec2/index.shtml

However are you absolutely 100% certain that Will's basal insulin dose is spot on correct? Probably not because I fully expect - as you say - he is still in his honeymoon period and the sporadic and unpredictable release of natural insulin will most likely hinder you somewhat in drawing longer term conclusions/predictions. Plus the other hormonal changes teens go through won't help, so it's very much a case of suck it and see for a while yet I'd guess!

But it wouldn't hurt at all to learn the theory ......

 

[trophywench]

I posted whilst others were typing or rather vice versa.

 

[Northerner]

I stand corrected - the online course is based on BERTIE, not DAFNE, and is BDEC's own course. 🙂

 

[fencesitter]

Thank you everyone! I'm really grateful for those links (looks great) and support 🙂
Re. William's basal - we've been adjusting it down slowly since diagnosis. He'd be OK for a few days, then have hypos between meals, then we'd adjust it and so on. Seems good for the moment as he's usually in the 5s between meals. But hormones/honeymoon do seem to throw spanners in the works at regular intervals! Better honeymooning than not though, I guess.
Catherine

 

[Northerner]

Thank you everyone! I'm really grateful for those links (looks great) and support 🙂
Re. William's basal - we've been adjusting it down slowly since diagnosis. He'd be OK for a few days, then have hypos between meals, then we'd adjust it and so on. Seems good for the moment as he's usually in the 5s between meals. But hormones/honeymoon do seem to throw spanners in the works at regular intervals! Better honeymooning than not though, I guess.
Catherine

I started on 20 units for my basal and currently I'm on 8, although I have been as low as 3! It's something that the general public don't really understand about diabetes and insulin - it's not really about having to inject it, it's about injecting the just right amount to keep you in that narrow range our consultants want us to achieve - which is a lot harder than it sounds! 😱 There's a possibility that, even after 3 years, I still have some residual beta cell function which helps to smooth the troughs and peaks of my levels.

 

[Tina63]

Hi there and welcome. We are only about 3 months further down the road than you, diagnosed in December. It still amazes me how things vary from area to area. We are in Oxon and have been taught carb counting from day one. We have also NEVER been told to test after meals, only immediately before! My son tests on waking/before breakfast, before lunch, before dinner and before bed, and only at other times if he feels hypo, so we have no idea how food affects his levels. We have never been told to test in the night either, so only do if he wakes and feels 'odd'. His HbA1c at diagnosis was 15.8. It has come down now to a record 6.1 today at clinic, after being 12.9 after 1 month, 7.8 after 2 months, 6.5 after 3 months and now the 6.1 today, 6 months in. He started on a massive dose of 30 units of Lantus though, and still is on 25 now, then calculates his Novorapid to go with his meal, injecting immediately before eating, unless eating out in which case he waits in case we decide on dessert. He basically eats whatever he likes, just matching his insulin to his carb intake, and we have so far achieved better and better results each clinic visit, so something's going right! We were given diet sheets in hospital on day one and the suggested school lunchbox was: sandwich, crisps, fruit, chocolate biscuit. Apart from sugary drinks and high sugar cereals, we were told nothing is off limits, so we just go with food much as we did before and all is going well.

 

[fencesitter]

Hi Tina
Thanks for the welcome! V interesting to read your post, and well done on the excellent A1c results. We only get one test every quarter; don't know what he was at diagnosis. In May he was 6.6 so we were very pleased with that. We were told to test 2 - 2.5 hours after eating, but tbh William doesn't do that so often now, only when he feels a bit odd or fancies a snack, or if we think his insulin:carb ratio might need tweaking. It's definitely different in the evening these days - he seems to need a bit more insulin to cover dinner.
When we got discharged, William was put on a dose based on his bg levels, rather than on the carbs he was eating, which didn't make sense to me so we learnt about carb counting pretty quickly and feel much more in control. His diabetic team are very pleased that we took the initiative but I don't know when they'd have got round to teaching us if we hadn't!
We also don't test at night, but I would start doing it if he woke up feeling grotty in the morning and/or had off levels first thing.
William does the same thing as your son when we eat out - injects between courses. He also takes a packed lunch to school. As his ratio is so low right now, I have to make a lunch that is in multiples of 30 carbs (he's 1:60 at lunchtime right now). We have a half unit pen so he can eat 30, 60, 90 or whatever! Taxes my maths and food prep skills, lol.
How old is your son btw?
Best wishes
Catherine

 

[Tina63]

Hi Catherine
My son is 16, his birthday was just 3 days after his diagnosis, so it was pretty awful at the time. His onset seemed pretty slow, but then he was a very overweight lad before, but the weight fell of him at an alarming rate. I knew what was wrong with him, but we couldn't get him to agree to see a doctor. He hadn't seen our GP in years, he was never ill. He apparently one day looked up diabetes on the internet, read about injections, so simply buried his head in the sand and hoped it would go away. Of course it didn't, and here we are today. He does cope really well, though I drive him insane (unintentionally of course) always asking how he is or what level he was this morning etc. Usually he doesn't want to talk about it, but occasionally he opens up. This evening though he had his lowest reading ever (for the second time) - 1.9. He had been asleep(!) and woke sweating, shaking, heart pounding and feeling very sick. He tested and that was the result. 2 small cokes later and he was back up to 5.4. I am always amazed how quick it turns round. He has just gone out with his mates for the evening. They seem a good bunch so I relax about him going out now.

 

[Tina63]

Me again
Oh and his units:carbs ratio is 1:10 - though every time we go to the hospital or have a home visit by our DSN we get told different things about tweaking it. 6 weeks ago we were told to calculate his breakfast units, then knock off one if it was going to be under 5 units, and knock off two if it was going to be over 5 if he carried on having hypos mid morning - which became a bit of an issue, but yesterday we saw one of the consultants and were told to knock a unit of two off his Lantus if it happens, especially if he starts having more in the night. Did you son ever start on high doses of Lantus?

 

[fencesitter]

Hi Tina
Rotten birthday present Sorry to hear about the hypo too. Do you think he had too much insulin for the previous meal? If he has episodes like that between meals or drops a lot at night I'd go with what your consultant is saying and try reducing the Lantus. They say there needs to be a pattern for a day or so before making adjustments (ie. don't make them based on one-off problems if things are mostly ok). Have you got the Ragnar Hanas book? Lots of people on here have recommended it and I must say it's been v.helpful to us - our DN is great when you can get hold of her, but often you can't so this book has been a real mine of information and advice. At first, we were nervous about making changes without getting the thumbs up from our DN, but a nurse treating William for his other problem, who just happened to be a type 1, said we should take control of it and experiment. She said don't make huge adjustments, and only change one thing at a time, but don't be afraid to do it and you'll learn fast. Good advice for us.
Yes, William did have higher doses at first - 16 Lantus I think he started on and about 5 units of novorapid with each meal, but he's been cutting both gradually ever since because of hypos. If it was between meals, we'd cut the Lantus; if after a meal, we'd change his ratio. A couple of weeks ago, William started going high in the evenings and that's still happening (hormones?) so he takes more insulin with dinner at the moment. Looking back at his bg diary, it's changed a lot since diagnosis - usually something different happens every week, although he's been on 4 Lantus now for about 3 weeks which is a record. Ratios currently 1:60, 1:70 and 1:50 but I don't expect it to last!
This is turning into an essay so I'd better stop
Bye for now, Catherine

 

[Tezzz]

Can someone confirm basal changes should be done gradually and take a few days sometimes to let the body settle down?

 

[Tina63]

I have to say I am not at all keen to mess with the Lantus, our DSN is most interested in his morning readings and says the Lantus is what keeps that steady, so as his are normally in the 5's we are not inclined to alter that. He started on 30, came down 2 after a few weeks, then 2 more after a run of hypos, then just 1 more when hypos started again. Mostly now things are pretty stable, but today's hypo could have been from his novorapid with a post-school 'snack' (rather large one) or just exercise, as he is mid GCSEs at the moment and is in and out of school all day so walking/cycling about more than usual. He doesn't have them too often at all any more, this big one today was a one off hopefully.