diabetes help please!!

[bramblebooks]

I could just do with a bit of general 'just keep going love'. pleeeease!

ds2 (7) was dx'd diabetic about 3 months ago. His blood sugars are barmy at the moment and today went so high that the meter wouldn't read it.

I really am not sure what I'm doing wrong and his diabetic nurse is on his hols until next week - I'll contact him then and talk things through.

We've swapped from novamix during the hols to try to get us used to using novarapid with each meal and some snacks. He has a longer acting levemir injection each evening, which I've just increased as his waking readings have been 12 or so for the last couple of weeks.

The diabetic nurse suggested just 2 or 3 units of the rapid acting insulin with meals, and I try to add more to compensate for him being high - but I really can't seem to get a grip on getting his numbers lower. We're not carb counting and matching that to insulin yet, which might be a way forward. Any thoughts or useful websites?

Just exasperated and frustrated. Poor lad gets really shaky and hyper anxious with high blood sugars.

Off to start the bedtime routine, I realise that there may not be many of you out there who are dealing with diabetes, but will look in later this evening and hope for the best. thankyou. x

bump!

Hi bramblebrooks,can't really help but my sister has a ds with diabetes and I know how stressful it can be so I'm keeping it bumped for you in the hope that someone notices. They do the carb counting each meal so I don't think she'd be able to help you if I was able to contact her. Is there someone in the diabetes unit at the hospital you could contact just for some reassurance? I know that you'd probably need to speak to one of their team to find someone with the knowledge that you need as quite often as a parent dealing with it daily you probably know more than the general medical staff. It will get easier. Hopefully someone with some real help will reply to you.

Hello bramble. So sorry about your ds's diagnosis. Three months in eh? Very early days and I know how you feel.

My son has T1 diabetes. He's 7 now and was dxed two years ago.

He was on mixtard 30 twice a day but then I wanted to move him onto a more adaptable regime so we didn't feel so much like we were having to 'feed the insulin' to prevent hypos.

Anyway now he's on Mixtard in the morning which sees him through 'til tea time when he has novorapid before his meal. He'll then have insulatard (slow acting - like levemir) before bed.

I've not heard of a regime like yours where he's not having a slow acting insulin along with the rapid in the mornings. IME this would lead to high readings, but I guess your team know best.

I would bump up the number of units of rapid you are giving. It could be that your ds is moving out of his 'honeymoon' period and needing more insulin.

I know in the early days after my ds's diagnosis they were very keen to avoid hypos so kept him running high. I've since become more confident at adjusting his novorapid dose as and when required. They say that one unit of Novorapid is supposed to bring down the reading by four units, or thereabouts, as a guide. This works for us. You have to take into account though any other insulin which might still be in the system.

If you want to email me any time I'm on jounderground at aol dot com. Feel free.

There's a brilliant but very busy Yahoo group which I will find a link for you. It's Children With Diabetes and the group is extremely friendly and supportive as well as a mine of invaluable experience and information. There are a few other MNers on there. If you are interested in joining let me know and I'll find a link.

As Jenth says there should be someone else at the hospital you can talk to. I used to talk to the duty doctor I think.

As you know you could do with getting his blood sugars down and if they're so high they're off the meter as he might be feeling a bit ill.

If he has two or three consequetive high readings you need to check his urine for keytones. Do you have ketosticks to do this?

It does get easier you know.

What are his readings like normally? My ds has high readings if he's ill, has an infection and sometimes for no apparent reason. You will become more confident in treating the highs.

I feel for you though because your ds is so young. Mine does his own injections now and has really begun the process of trying to take charge of his condition.

It breaks your heart though doesn't it?

Anyway, I must stop posting as I could be here all night.

Do feel free to contact me and I'll check back later. x

thanks guys. lump in throat at having some support.

No ketones, but boy oh boy is he anxious and whiney.

I'm going to go back onto the mix tomorrow as I can't stand the high readings.

the diabetes nurse said that the evening levemir would be a 24 hour background - I've raised that, but he's still sky high.

Spidermama - I would really really appreciate the link to the Yahoo group - I need the support.

Know what you mean about them coping with it themselves. He's just started to do his own blood tests, and to prep the injections, but we're a while away from him doing his own injections.

• it's reassuring to think that his higher need might be because the honeymoon period is over - rather than something random and unidentifiable. I think that he has also grown - he didn't grow much for a year or so before he was dx'd.

His readings are running a bit higher than he should but he has hypos too.

He's having a tough time emotionally - he was up until almost 1am last night with anxiety. I've had enough! DH is away on business for a few days and I'm trying to give DS1 (a real sweet heart at 11yrs old) the love and attention he deserves too.

Bramble it sounds like you're doing so well. I know what you mean about the siblings needing you too.

His whineyness and anxiety will be to do with the high readings. It's well worth getting those down. I know my ds has a complete personality change when he's high.

I'll just dig our a link for you for the CWD group.

Here it is. Scroll down to the union flag and click to join the UK group. Highly recommended. It's very busy at the moment and I don't get time to read all the emails, but great to be in such a knowlegeable and experienced community.

Growth spurts can send readings haywire too. Are you confident enough to adjust the doses yet, or would you rather wait for direction from the team?

Thanks Spidermama. I've been adjusting away, but even considering the different foods he has (and boy, do those roast potatoes send him sky high for ages!) there often seems to be no pattern to it - even when he eats the same foods. He's not had a 'normal' reading (4-7) for weeks now.

I wondered away at having no morning long lasting dose, but have gone with the expert decision. Let's hope that the 'step back' to the novomix which ties us into eating 4 hours after breakfast, and not before - a pain as he can be starving even after a mid morning snack.

I have T1 and this might be relevant to you - you could ask your doc - but both me and my T1 brother found levemir to be a real nightmare and to not work nearly as well as lantus. Levemir is meant to be 24hr basal but neither of us found it to be whereas lantus pretty much is, and therefore easier to predict. Appreciate it could be different for a kid (I had insulatard when I was your Ds's age) but could be worth mentioning.

Oh and the children with diabetes website www.diabetes123.com is GREAT. You can even email their panel of doctors with your questions, or view the history of people who've asked similar questions.

Bimblin why would they give Insulatard to younger people rather than lantus I wonder?

thanks bimblin. He's downstairs again and must be absolutely exhausted, but is tearful and complaining of tummy aches. Just tested for ketones and he's clear but passing so much sugar in his wee (nothing new there though).

Its difficult to get approval for use of new drugs for kids (and pregnant women) so some docs play safe and don't advise using it. It not so much they are bad but you aren't allowed to test them on kids/preg women. When I wa pregnant it wasn't actually 'approved' to use lantus.

Also, BB, whilst your nurse is away, I recommend you write down all the food/insulin/exercise/bg readings he's having so they can get a good picture of the scenario over a few days. When you see bg readings in graph form you can see patterns. Then ask if he can have a continuous glucose monitor for a few day. This gives you a great idea of exactly when he is high/low and then you can work out why.

will do I 've got to get a cable and I can link the blood monitor to the computer.

Yeah sorry BB you probably knew that

I thought I knew everything though, I was dx'd 27 years ago, and the continuous glucose monitoring showed that I carbohydrate counted pretty inaccurately but the basal was fine.

Have you spoken to diabetes uk? They do camps for kids as well.

Yes diabetes UK also do a really good family support weekend. You need to get in early as they are over subscribed. Very helpful.

My ds is going on the holiday in August but you have to be 7 for that.

thanks for the tip -I've had the list but was dragging my heels.

there's one near us here in cheshire for families

I've just noticed your ds is 7 not 2. Sorry.

Thanks for the support last night guys.

I phoned the ward today for support as our contact is away on hols. Fortunately for us, our consultant was doing the rounds and phoned us when he'd finished. He's upped the insulin and told me that I can give a dose even without food if ds2 is above 15 in order to bring it down. Ds2 is still running in the teens, but not the 20s, 30s like throughout the week.

He's still complaining of stomach ache, pains in his sides, etc, but no ketones. Does this ring any bells? I'd put it down to wind or to him being high for such a long period.

Hi bramblebooks,

You have my sympathy completely. My daughter was diagnosed last summer at 17 months old and it knocked us for six.

The highs you describe certainly ring bells, my dd used to get very aggressive when high, probably partly due to pain and also the fact that being so young she couldn't express herself.

Our problem was that, on injections (she was on MDI:novarapid and levemir) we couldn't correct hypers accurately because she would crash down low, half a unit of nova would lower by 12mmols or more. This meant she was quite often high, particularly at night, her waking levels were always around above 10, we just had no control.

She is now on a pump and it has worked wonders because we can give her tiny amounts and she can eat whenever she wants...the highs can be corrected instantly on the pump.
Its hard work though, the carb counting is a real pain but its getting easier.

I would second others on here who reccomend the CWD email list, it is brilliant, I've learn't so much.

I hope your little one starts to feel better soon..its so horrible seeing them feel dreadful.

I'll check in later if theres anything else you want to ask...

LRx

Thanks lulu, our diabetic nurse has put us in touch with a local family who are about to start on the pump.

Our local PCT fund ..... 2 ..... of these a year!!!! Apparently you don't get one unless you can make a strong case to the specialist. I'm still thinking it through.

My sympathies are with you, having a tiny little dd with it. What pain does she have? I'm trying to get a handle on these stomach pains of ds's.

Really don't know what's going on at the moment with numbers though, there doesn't seem to be any reason to it at all.