daughter being tested for diabetes: advice or expriences of this please?

[lulurose]

Hi all, took dd2 to GP today (she is 19months). She has, over the last week or two gone from drinking 2 or 3 cups of water a day to about 12, I have been changing her wet nappies constantly. Her colour had gone and she seemed very grumpy inbetween meals. My GP has taken urine samples and she is going for blood tests tomorrow, the main concern for him was diabetes and he said drinking this amount of water was a concern.

I am sitting here fretting now and wishing I had asked more questions.

Any advice or experiences of these symptons would be gratefully received.

Thanks

have a look on special needs- there's a post today from a mum of a 4 year old who has started a diabetes in children website for mutual support.

lulurose your dds look lovely I hope Tess is feeling better ASAP Well done you for taking her to A&E (am a bit surprised your GP didn't test straight away too), I work with someone who was diagnosed with type 1 diabetes aged 4 ish and again she is fine does pretty much what she wants keeps it under great control and has little in the way of complications. Good luck and good health to you all!

Agree with Knitter, much better that she's got it at such a young age. I was pretty young at 9 but at that age i did have to adapt, get used to shots and finger pokes. Back then things were much stricter with the diet, it was like no sweets and no sugar, but things have changed a lot now and it's pretty much a case of just healthy eating onces she's stabalized

Hi Lulurose

Your daughters are both beautiful ... hope it's going ok today and that Tess is getting back to her usual self.

I'm glad to see that Paddyclamp and some of the others have found this thread. There are quite a few Mums on here who have little ones with T1 diabetes and hopefully they'll see this and add their own pieces of advice. It was through here that I found out about the Children with Diabetes mailing list which I mentioned. Just say so when you're ready for some info on it!

Life will be different but not all bad! Keep us posted and lmk if you want my e-mail. Gotta run now.

Hi lulurose,

So sorry to hear of your son's diagnosis. My ds, now 10, was diagnosed when he was 5. He's just come back from a week's residential rugby camp, battered and bruised but fine diabetes-wise. It's a very worrying time, especially as your lo is so young and you have had a rough start, but once you get the Bgs under control and you are into a routine things will get better.

Hello millie1 - just saw your posts on cwd. I'm lurking rather than posting on there just now, as someone who knows me from work joined when their ds was recently diagnosed and spotted me on there. Bizarrely this was the second time this had happened (another CWD person came to work with me about a year ago, so I "knew" him from CWD before he became a colleague) and - despite being the person who sends all newly diagnosed parents there - it was disconcerting being spotted. So am keeping my head down. Am v busy getting ds's back into school this week, and have been away a lot over the summer.

Sorry lulurose for hijack.

Hello again paddyclamp (wave).

Hi Tangarine ... thought I hadn't 'seen' you on CWD recently. That would be a bit disconcerting - I'd hate to have my cover blown, not because I've something to hide, just because I can be more open when I don't actually know anyone in RL. Good to hear that your DS survived rugby camp - I think that would be bad for my nerves. We're all over the place at the moment - you saw that DS had a tummy bug. Reckon he must have some sort of insulin resistance now - we're increasing his insulin in bigger than usual steps but he's still shooting up into teens/twenties with some ketones and we've given rapid two consecutive nights. Hope we can get him sorted soon - we're all exhausted from the sleepless nights.

Hi millie1,

The strange thing is, if the person in question had told me that they had a child with d, the first thing I would have done was tell them about cwd! When he got in touch I went round to see his wife and ds. But like you, I sometimes say more than I would in rl, especially about emotional stuff, and didn't want to feel exposed at work. It was the being rumbled which got to me.

Ds was ill one morning at camp but they were good with him and by tea time he was back on the field! There was no mobile reception where they were so I wasn't getting any regular news.

Is your ds coming out of honeymoon do you think? I saw you had been having problems. Ds has also been shooting up at night, but as he's back to school this week I'm not changing doses (just correcting) as it will all need changing again in a few days. I hope you get it sorted soon.

Txx

That's the problem when you find a good website and you know someone would benefit from it. Hopefully you'll feel comfortable again soon.

Think he is coming out of honeymoon but we really had to reduce his insulin last week with the bug (down from 9u per day to 2.5u) and we don't seem to be able to get it back up fast enough. We've had hypos at lunchtime the last two days yet he's been 12-17 at teatime so definitely needs the increased dose & more - it's such a balancing act. I'm sure we'll get him back on the straight & narrow in the next few days.

Hope school goes well for your pair this week.

Hi millie1,

That's quite a drop. Have you thought about trying another mix if the highs are at tea time? I think you can get different proportions of long and short acting in mixtards. Or the dreaded lunchtime injection? Or mixing your own? At least with the pump we can tweak the basal if there is a pattern of highs at the same time over a few days.

ds 2 goes back on tues and ds 1 on Weds. Dh was supposed to be away this week but is now here so will sort out ds1's return to school. I've sorted out all his stuff and done the packing tonight and just have the diabetes bag to do. I can't believe the hols are over so soon.

ps don't forget that if he is insulin resistant for a few days he'll need more insulin than usual to bring him down and you may need to drop again once he's back to normal...

Thanks Tangarine. Will keep a close eye. Don't want to do the self-mixes. Have been going ok with Mixtard & feel this is probably due to illness. Also, we're working on talking hospital around MDI - not immediately but maybe medium term.

It's surprising how quickly the holidays have flown by especially given the distinct lack of summer weather. Am sure you'll miss DS1 when he goes back.

Lulurose ... hope things are going as well as they can with you and that you're beginning to find your feet.

Now ... with children at playschool & school ... housework calls.

Hi Millie and Tangarine
Good to hear everything's goin ok for you guys

How things Lulurose? Hope your all coping. If the docs start going on about complications don't panic. After over 20 years of diabetes the only complication i have is a few minor cotton wool spots in one eye which i don't even notice. They said that could even have been caused by the oushing stage of labour !

No matter how much any of the kids hate shots at the minute they will get used to it and in time it honestly won't bother them.

Hi all, thankyou for all your lovely messages. Tess seems to be doing well, shes still high (low 20s) but they seem be getting nearer to what she needs insulin wise. I was able to sit down with the diabetes nurse and dietician today and work out a daily routine for injections, meals etc although of course I know this may change. She will be having 3 novarapid (sp) after meals and a levimer (sp?!) in the evening. Its all new to me but hope that makes sense, have been warned o expect loads of tweaking.

Seeing the consultant endcrologist on Fri and have a long list of questions to ask, she has already been referred to someone at Great Ormond St/UCL re suitability for an insulin pump so lots of wheels have been set in motion.

We are hoping to bring Tess home tomorrow afternoon with lots of support from the dabetic homecare team....

Will let you know how it all goes...

LR x

Hi Lulurose

It sounds like you're all doing really well and to be getting a referral for a pump is just fantastic. Meantime, you should do well on the regime you've been put on. it's more flexible than twice daily, pre-mixed which is what my little boy is on so although more injections for Tess, at least you can be more relaxed about food. You'll be fine at home - everyone will probably be much happier back in their own environment. Glad to hear it's going well so far.
Take care

I'm on 3 x novorapid and 1 x levemir, it's a great regime and gives you loads of flexibility once you get to grips with it.

You have to adjust doses depending on what you eat, when you exercise etc but you soon get used to it

Hi again, things going fairly well here and we're beginning to spot patterns in the readings throughout the day. Tess is always very high after breakfast so we've upped the novarapid there for example. She seems well in herself and is gradually putting weight on, she is ravenous at every meal and eating larger portions than ever before but have been told not to worry.

She is really missing her bedtime cup of milk as we were told that giving it at 7 o clock may take her too high at night, does anyone have any idea how to get around this? Also, ideas for desserts that are acceptable, so far I have been giving fruit and low sugar yoghurts but that is about it.

Again, thanks again for sharing your experiences... x

Hi lulurose,

Great to hear you are doing well. And really good news about the pump referral. Some families I know have had to fight long and hard for a referral so you are definitely in a good place. My ds has been pumping since November 2005 and it has been great for him. With the pump you can do things like try to get around the post breakfast spike which you mention (which happens to everyone) by increasing the background insulin for a couple of hours. Make sure that you get one of the new Sensor Pumps, which measure BG levels constantly. Ds had a loan of one for a couple of weeks in the holidays and the control we got was a lot better. Even if you don't use the sensor every day it's a good tool to use now and again - for example it will tell you what is going on overnight without you having to stay up and test every couple of hours.

I'm guessing with such a young child you will be using tiny amounts of insulin or even diluting it (another good reason for pumping as you can give increments of 0.1 units rather than the half units you can go down to with a pen)? To deal with the bedtime milk, for an older child I would suggest a slightly bigger supper e.g. if your dd wanted to eat a biscuit with her bedtime milk and then another injection (before pumping ds had 4 novorapid - breakfast, lunch, tea, supper and 2 levemir shots a day). Alternatively you could try using another insulin, such as Actrapid with tea, as it has a longer duration than Novorapid and could possibly cover tea and bedtime milk. We did this for a while before moving on to the pump but as ds was coming in from school ravenous and then wanted a bowl of cereal 2 hours later (he got into the habit when he was on 2 injections a day and we had to keep his levels up overnight) we usually ended up topping up with novorapid anyway. Some people find that levemir causes their blood sugar levels to drop overnight, so you may find that Tess can manage a cup or bottle of milk before bed without her BGs shooting up.

As far as desserts go, anything with fat in it is absorbed a little slower and doesn't give as big a spike, so yoghurt, custard, rice puddings are quite good. So is ice-cream. Ds isn't really a pudding person, and he also has coeliac disease so his food choices are limited so I don't really offer puddings, but if we are out it's usually ice-cream. You can give Tess things with sugar as long as you cover the carbohydrates in the food (and almost all food contains carbs) with enough insulin.

Sorry, have gone on for far too long. Hope you are not completely bamboozled now.

Txx

Hi Lulurose

You sound like an 'old hand' at this already. It's wonderful to see the weight go back on post-diagnosis.

The post-breakfast spike is a real pain ... we get a huge one with the insulin we're on (two injections a day). I can't help with avoiding it on your regime but Tangarine seems to have given you good advice and some ideas. We found food was the most difficult aspect - stroppy three year old etc but things settled down over a period of time. As far as deserts go, we usually stick to yogurts & fruit and the little milky maid (is that what they're called?) ice lollies have been handy during the summer.

We couldn't actually get DS to eat the low sugar yogurts ... Fruit Tumbles aren't too bad for sugar (I've got the exact sugar content written down somewhere and can check for you if you want) - I had several conversations with Yeo Valley and they were good enough to tell me the sugar content of most of their kids products - most of the sugars are lactose or fruit rather than sugar, sugar IYSWIM. These days he would have Pooh Bear yogurts which Asda do or else just the little pots of Thomas/wildlife - after a carb-heavy meal such as dinner they don't give him a spike.

HTH

Hi guys just popping back to see how you are all getting on, really pleased you have a referral for a pump and for those with one that it's working so well.

Hi all, hope you and yours all well...

Its a week now since dd2 diagnosed with type 1 diabetes and i've had a very teary day today. DD1 an I both have stinking colds and just waiting for Tess to get it too. We were up with her at several intervals last night as she was low ish at bedtime (&) and then 4.1 at midnight, ended up on the phone to hospital and giving her milk and biscuits at 2am...she loved that!

I feel very sad today, sad for the healthy little girl I thought I had, and sad that its not me poorly instead of her...I hope this will pass, although it breaks my heart every time I inject her, she's too little for me to explain why i'm doing it...

lol LRx

(7) that is!

Lulurose. It's so tough. I used to read recipe books with tears streaming down my face as I looked at all these things DS could never have. It still makes me sad to think of it.

I'm sorry you've had a bad day. Waking LOs in the middle of the night to give them food isn't much fun. DS thought it was great too, at first, but now hates it. We tend to do what you did last night - if he's low when we go to bed, we'll check regularly rather than wake him. It means we've cut out 90% of midnight feasts although obviously you didn't have that option last night.

Keep strong, you're doing great.

Mx

I know, I really enjoy baking too but i've completely lost all enthusiasm for food and cooking at the moment.

The lack of sleep and constant fretting about glucose levels is really affecting us now and am dreading Monday when dh goes back to work and i'm on my own with all the responsibility of managing Tess on my shoulders.

I feel any sense of fun and spontenaity has gone from our family life at present, we daren't venture too far from the hospital...its very early days I know...sorry for going on

Hi lulurose and sorry to hear how you are feeling. It would be weird if you didn't feel sad. People talk about a diagnosis being like a bereavement as in one fell swoop your life changes and all your hopes and plans for your child fall to bits. TBH, ds was so ill when he was diagnosed that we were just so relieved that he survived and the diabetes didn't hit for a while. Injecting your lo is horrid, but remind yourself that you are keeping her alive.

While your lives will never be the same, what I can tell you from our experience as a family and through knowing lots of other families through the mailing list mlllie1 told you about is that diabetes doesn't have to stop you or dd doing anything. Yes, you have to plan things a bit more and you always need the BG meter and the lucozade everywhere you go - but you get used to that, just like you get used to having your nappy bag with the right things in it with you all the time when you first have a baby. My ds plays rugby, football, cricket, swims etc. One of his (slightly older) friends with diabetes has just learned to scuba dive. Another girl with d is a champion gymnast.

Things WILL get better. Stay strong. Txxx

This thread is a real eye opener to me cos i'm reading it as a diabetic rather than a parent - it makes me go cold to think that my mom probably felt like you guys do, she did a very good job of putting on a brave face! But she'll have been carcking up inside too.

Tess still is healthy. In fact the whole family will prob turn out healthier as a result, you'll eat better, exercise more, have regular checks at the hospital etc.

The sugar in the diet thing - remember that the doctors / dieticians will want you to be ultra cautious as it's early days. But as time goes by and especially as she gets older there'll be no such thing as not being able to eat something. The only thing i completely have to avoid is full sugar coke etc, but then again a lot of non-D people drink diet anyway. If Tess is on basal bolus insulin regime she will have a lot of flexibility and even more if she goes on the bump.

Injections are a hassle but i don't even think about them any more.

Hypos are probably the most annoying part of diabetes for me but like Tangarine said if you carry your blood machine and lucozade everywhere you'll be fine.

I know i'd be gutted if either of my kids was diagnosed cos i'd have the guilt factor to live with knowing i'd passed it on. But when i think there are kids out there beind dxed with cancer and other terrible things i'd rather it was diabetes.

If i had a wish that i could change just one thing in my life i wouldn't waste that wish on diabetes, and that's after 20 year with the bugger!

I can honestly say the only thing i couldn't have cos of diabetes is a water birth - and they're not everyones cup of coffee anyway!

You'll get there Lulurose, and remember - diabetes will upset you more than Tess