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!

I was reading pump info last night too ... thought they sound much more complicated than twice daily injections.

Evening ladies,

Just back from a night at the theatre, opened my credit card bill and found I'd been done for £400 by someone withdrawing Russian roubles. Grrrr.

LisaHy - does your blood meter check for ketones as well? We usually do a ketone check if my ds is high. Could the shock of the sprained ankle have put up his BGs? My ds goes sky high with any stress (e.g. SATS at age 7, start of the new school year, illness etc).

Millie1 - the pump is hard work, at least to begin with. I likened it to having a new baby, you are delighted to have it at last after waiting for so long, but it doesn't do what you expect at least half of the time and after 6 weeks I could have chucked it out of the window. We persevered though, and now ds would not be without it. They usually want you to be out of honeymoon before starting on a pump, although in many countries newly diagnosed children are put on them straight away.

Be warned, the CWD list is as addictive as I've heard mumsnet can be. I tend to only lurk around here as I don't have much to say on many of the chat threads. It is a bit mind boggling at first especially if you don't know what people are talking about, but you soon get in the swing. Come on and introduce yourself, don't be shy.

him i hope u all ok ive just been through this my daughter was 2 at time in nov 06 diagnosied typ1 is on inj 4 x a dady if u want natter or anyone please on
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Hi Debbie,

If you want to chat about diabetes you could join the Children with Diabetes mailing list. I posted instructions a bit further down about how to sign up. You just enter your email address on the website and hey presto you will start getting emails from complete strangers about diabetes . There are about 100 families on the list and the way it works is someone sends an email to the list address and it goes to everyone on the list. People pitch in with replies and so it goes on. There are several families with children as young as yours. At the moment we are discussing DLA, support in schools and a sickness bug that's laying many of our children low. Exciting eh, but very important to us Mums of diabetics .

My son was 5 when diagnosed and though it was hard I can't imagine managing a really little one. I met a lady today who would have been in her 30s at a guess who was diagnosed at 2 years old. She looked really fit and well. Half way throgh the meeting she whipped out her finger pricker and must have been low as she then ate some jelly beans.

Most kids in the US have a pump. I got offered one on the NHS (i think!) because i have hypo unawareness. When i'm going low i don't usually have any symptoms. The only time i get symptoms is after alcohol!!!I have to test v regularly esp if driving / looking after the kids. But i've had diabetes for 20 years and there was a type of insulin around in the 90s that caused a lot of people to lose their symptoms.

If i didn't have hypo unawareness would i have to pay? I guess in the US everyone pays for it anyway.

Hi Paddyclamp. There are NICE guidelines about qualifying for a pump. You have to have an HbA1c consistently over 7.5 or 6.5 with complications; have tried MDI; and be committed to pump therapy. My DS's HbA1c has been up and down over the years, but if it's low it's because he has daily hypos. He once had a seizure when he was hypo, so that was another incentive to pump (he was on lantus at the time and it seemed to build up in his system and then release all at once). I offered to buy the pump myself but was told by Meditronic (main pump suppiers in UK) that they no longer sell pumps as people can't always keep up the payments (as well as the pump itself the consumables like canulas, lines and insulin reservoirs are quite expensive). I don't know if hypo unawareness counts as a complication, but for my ds "frequent disabling hypos" was one of the criteria in the letter from the consltant to the PCT. It was agreed without any bother.

I was at a meeting today to discuss pumping and the stats were scary - in the US 25% of T1's pump, in Europe 10-15% and in the UK 1-2%. Because I'm actively involved in children with diabetes and lots of members' children pump you get a mistaken impression that it's more common than it really is.

It is hard work to start with but definitely worth it. You could try giving it a go and giving it back if you didn't like it. One of our group's teenage daughters has just come off her pump as she felt self conscious with it attached all the time. My DS gets annoyed sometimes when boy at school ask what it is or if it's an MP3 player on his belt

hiya im really interested in the pump my cousins daughter is on pump and heard bits i think would help my daughter but ive asked they refused us at min we havin lots of probs gettinher nto our local nursery big problems im even awake now durin the night it going over and over my head my daughter is down wth a bug at min and doesnt seem to shift it we at diabeticnurse this mornin for her to look at her she refusin food and now gettin sm elows im firghtened a lot as im new to it all and i aint lookin forward to the rest of my life with all this stress sorry just had to write down as im really feeling very fed up

Poor you - Debbie. When I first came on Mumsnet - I felt very isolated, especially after moving to a new area, and felt the responsibility of being the Mum in charge overwhelming especially after a summer full of highs - Mumsnet was a great help at the time. It's alot to take on knowing that we will always have the worry. Like tangarine said it must be even harder for you and Millie with little ones. My ds was 6 which is easier.

Despite wanting our kids to be perfect unfortunately life just isn't like that. There will be ups and downs. A lot of cliches there I think! You CAN do it! Do you have any support at home?

Anyway - keep talking to us, or the CWD email list - we're all in the same boat and listening.

Hi! I've been a type 1 since I was 3. I don't suppose any of you live in Leics do you? There's a fab diabetic camp each summer that my mum helped to set up, and I went every year til I was 16. Loads of the kids learn to do their own injections there, and they do tons of activities to prove there's nothing you can't do, as long as you're careful about eating snacks etc before being active. Apparently it was quite amusing, 40 7 - 16 year olds all waiting to go into the swimming pool, with someone distributing kit kats to everyone.

I think all you D-mums are doing a great job. Your positive attitude will go such a long way in helping your kids grow up with this condition.

Having had this condition for 20 years I always felt my parents let their own "grief" over me having diabetes affect the way they were over it. As a result i was always a bit embarassed about it and used to go to great lengths to conceal it, even though i'm getting over that now.

So keep up the good work, it'll make such a difference to your kids

Hi folks ... I feel like I'm doing a rotten job at the moment and am really down in the dumps. I've posted a thread on Food which pretty much says it all but we're having a really tough time trying to get enough carbs into DS. He's been hypo this past two lunchtimes cos he has simply refused to eat enough breakfast and although both days he'd a snack worth around 2 exchanges, it's just not enough to carry him through. BD (ie. Before Diabetes) breakfast was simpy weetabix or readybreak now AD (After Diabetes) he will neither eat these nor krispies/cornflakes/oatabix. Think the fussiness has stemmed from a week in hospital when he wasn't eating well and would be offered choice after choice after choice. We don't have the luxury of saying 'okay then, off you go and you won't get anything til lunchtime' so there doesn't seem to be a way to get through to him that he must eat without offering raisins/fruit flakes (I know, not great), grapes etc so he's just getting more and more spoiled.

Dinner's a nightmare too - not every night but the things that he eats well, DS1 doesn't so it's one or the other not eating and it's just so stressful.

Sorry for such a long, whiney post but I just really need to get this off my chest and any suggestions would be so much appreciated. We obviously do potatoes/rice/pasta for dinners but it's hit and miss and he won't eat lentils although I'm going to start sneaking a few into some meals. And he looooves tinned cream of tomato soup which is loaded with sugars and now off the menu and low-fat/sugar alternatives are just pushed away.

Hey Millie
It really is not your fault. Your DS isn't at the age where you can totally reason with him yet so it must be v hard (i gave my folks a hard time and i was 9 when diagnosed!).

Did the dietician specifically tell you that tomato soup is out? Only it's something i eat. I'm suprized they've been so strict, thought exchanges were things of the past.

I guess i have a bit more flexibility due to being on basal bolus, but the only thing i try and avoid are sweets and puddings and things like full sugar fizzy drinks.

Just thinking that if you could get him to eat the soup maybe he'd have plenty of bread with it.

Things will become more relaxed, the diet will anyway, with time. Is he on 2 shots of mixed at the minute?

Please don't feel like you're doing a bad job, i can't say i don't know what it's like to have a young child with diabetes, only what it's like to grow up with it. You're doing a good job and it will get easier

Hi Millie1,

Don't beat yourself up. It's all very new to you and your ds and he is bound to try to find a way of kicking back. He's only a little boy and probably doesn't fully understand what is going on.

Now, as for food. I don't know if you have been taught carbohydrate counting (I'm only vaguely familiar with the exchanges you mention). Basically, as your son is on a fixed amount of insulin every day, he needs the same amount of carbohydrate at more or less the same time every day. If, say, he is supposed to have 40g for breakfast this could be either a bowl of cereal, a piece of toast or a glass of juice which I'm guessing are the exchanges you are talking about. As long as you get the carbs in it shouldn't matter too much where they come from - a cheese sandwich will do if that's all you can get him to eat. Children on pumps and basal/bolus inject the amount they need to cover the meal they are having, so if they don't fancy much food they don't inject as much, and if they want an extra snack they have an extra injection/pump bolus. As for the tomato soup, if that's what he wants he can still have it. Find out how many carbs he is supposed to have for tea (one exchange ought to be a set amount of carb e.g. 10 or 15g), and work out from the side of the can how much soup makes that amount of carbs. You can probably slow down the effect of the soup if it's high GI by offering some brown bread with it. But remember all carbs are converted into sugar during digestion. Sweets and sweet things aren't off the menu completely but they are best given with or after a meal so they don't hit an empty tummy and push sugars up as high. Another thing is that fat slows down absorption of carbs, so pasta with cheese will sometimes affect the blood sugar differently to pasta with tomato sauce if you test a couple of hours later.

A couple of other mumsnetters have popped up on the CWD site I posted about the other day. Come on over, you'll get lots of support there as there are others with children of your ds's age.

x-posts with paddyclamp. Glad she also thinks it ought to be OK to have the soup. Paddy, do you carb count? I am pretty strict (I weigh most foods) but it is quite a chore. I expect as time goes on it will be easier to guestimate the carb content of a plate of food.

Thanks Paddy & Tangarine. First, the tomato soup. The sugar content is almost equal to the carb content. Our dietician told us aside from checking the nutritional breakdown, to look at the list of ingredients which are listed in order of quantity - sugar is second on the list which to us means it must be high in sugars (as opposed to say, fruit or lactose sugars in another type of product). Do you think he could have it with bread for lunch some days? TBH, Fruit Tumble yogurts are fairly sugary but of the 13g (approx) of sugars, only 5g are actual sugars, the rest are fruit & lactose sugars so I do give him one occasionally.

Tangarine - yes, 1 exhange is 10g carbs. So, for breakfast he has to have 4 exhanges - say 130ml milk (1 ex), slice toast (1-1.5 ex depending on how much of the crusts he eats) and then we're depending on cereal for the other 2 exhanges and that's where he's throwing his head up.

Yes - he's on mixed insulin twice daily.

I think I need to become more familiar with low & hi gi foods - is this the key? I had a look in Waterstones yesterday but any 'gi' books I spotted seemed to focus on weight loss which certainly isn't what I want. Can someone please give me a 'GI for dummies' lesson - pretty please?

The dietician told us that there's really no difference in exchange value between white and brown bread - but would brown not be slower to digest hence slower release of energy?

This is just so hard at the moment and I really appreciate your support and suggestions. Injections are getting worse, not better and he's begging us not to do them. If we could get food sorted out, then at least we'd be taking a step in the right direction. I'm still off work and will have to go back in about another fortnight but really need to have his diet on track before going back.

Hi Millie
I got really worked up about food at the beginning - I think they pick up on this as well, which makes it all harder. I also found the same thing about the GI books - aimed at adults losing weight and / or type 2.

I have joined the CWD mailing list - it's great. You are more likely to get the support you need there and from parents with children the same sort of age. I wished I had known about it at the beginning.

If he's really not eating enough at breakfast why not lower the insulin a little for a few days and let him have as much as he is prepared to have and try and relax. At least he is under your supervision and you can keep a close eye on him. In the Summer my ds refused to eat all day! on several occasions - slightly easier on 4 injections - but I just ignored him (htough panicking inside)and made sure I had food hidden in my bag when he made up his mind to eat. It's hard for them and they want control back!

Hope today has been better and hope to see you on CWD.

Also - what about pancakes as a breakfast alternative - have they been mentioned - we sprinkle with the low cal sugar.

What will happen when you go back to work? Two weeks is quite a long time - I took two weeks before I went back after diagnosis, but thought it might be never!

Hi Tangarine and Millie

I don't carb count as such and certainly don't measure everything out. But i guess i've become that used to it i know exactly how much novorapid (short acting insulin) covers each meal. Also being on basal bolus it's easy to reduce insulin if i'm not that hungry or take extra if i have sweets (i sometimes have chocolate after meals). Then if later in the day i'm high i can take a bit more insulin. But i do loads of blood tests. Also i've had diabetes for 20 years, am totally used to the injections etc.

I'm really suprized that the dieticians are being so strict, i honestly thought exchanges were a thing of the past. I think at first they get you to do everything by the book then you can relax things as you learn what works and what doesn't.

I eat what i would describe as a normal healthy diet, the same as my OH and my friends. The only thing is making sure each meal contains starchy carbs and making sure i have diet coke and not fat coke. I know of a few adults diagnosed in childhood and they're the same. The reason i'm telling you is to let you know that in time it will be the same for you guys.

In time Millie you will get used to it and relax. I think at the minute while you're both adjusting the main thing is to make sure he doesn't go hypo. As for the injections do you use a novopen? Once you find a pen needle size that suits injections are a lot less painful, esp compared to the needle and syringe.

Who looks after your son while you work?

Hi LisaHy & Paddy ... thanks for your advice. I'll have a look at the CWD mailing list - do you get innundated with e-mails though or is it not too bad? Like you say, the support would be good. It's hard not to become fixated with what he eats. The diabetes nurse called tonight and is concerned re low blood sugars at lunchtime so for the next few days we're going to try giving him his insulin after breakfast to see if he will eat b'fast if more relaxed; if that doesn't work, we'll lower his am dose by half a unit.

I can certainly see how he (and we) can have a perfectly normal, healthy diet ... if only he would blooming well eat! We'll get there though but yes, it's been a huge few weeks for him and I guess we all have some adjusting to do.

Paddy, yes, we use the novopen - I think it's great but DS doesn't!! When I go back to work, he'll return to nursery. Nurse has been to do a training session with them and he was at playgroup today (had lunch there too) and was fine - delighted to be back and in great form afterwards. I can't imagine feeling organised or well enough on top of things to go back to work just yet but am working towards it.

Hey Millie

What sort of day have you had today?

Hi Paddy - thanks for asking. Well, DS1 had to be taken to the out of hrs Dr's at 4am this morning so it got off to a great start - not! They diagnosed him with throat infection but he worsened and we took him back to our own gp this pm and he has croup - narrowly missed admission to hospital. Sleeping now.

DS2 meanwhile, refused breakfast, didn't eat all his lunch but had good snacks and ate a fantastic dinner. And just to make matters even better, he's running a temperature and must be coming down with something. His levels have shot up a bit (guess that's to be expected?) - they were 15.6 before supper and when I checked a while ago he had come down a little to 14.1. Ketones 0.1 this pm, 0.2 suppertime and now 0.1. He's on Calpol and I hope nothing else comes off it. Are you sorry you asked ?

Tomorrow's a new day. If only we could sort breakfast's out - nurse is talking about changing (and I presume she's only talking about his am injection but am probably wrong) his insulin from Mixtard to something we'd mix ourselves with less of the rapid insulin and more long acting in order to counteract his poor breakfasts. The downside of that is that it's a needle & syringe job and he would go nuts so we're very keen to avoid it. She has agreed not to do anything just yet. It's early days and he's still upsidedown and adjusting to everything.

Thanks for asking & thinking of us!

Hi Millie
My computer has died, so quick sneak on here at work!!
Hope your little one is feeling a bit better. The blood sugars can go either way - sore throats are notorious - I think the body produces insulin when you fighting an infection hence the blood sugars rising - is that right Paddy??- (not sure how a diabetic would do this??). I find calpol helps bring them down.
Your're having a rough ride! You'll be an expert before you know it. We didn't expect motherhood to be quite like this though did we?

Hi Millie1 and others (wave to Lisa, thought I hadn't see you on CWD for the last few days!),

Sorry to hear about the sore throat, my son has it too for the last few days has been running very high. Sorry also to hear about the croup - my ds2 woke up with it in the middle of the night about 18 months ago and it was terrifying for both of us.

We were living abroad when my ds was diagnosed with diabetes and were taught to mix short and long acting insulin as your nurse suggests. It does give you a bit more flexibility - if you and ds can't bear the thought of a syringe, I think there are other mixtards available with different proportions of long- and short-acting which might help with the lunchtime hypos. Ask your nurse.

I remember going through hell injecting my ds as well. We ended up with a star chart, which I found by chance the other day having completely forgotten about it. This sounds really daft, but one thing I was advised to do, and worked for ds, was to a) let him chose arm/leg/tummy/bottom and b) draw a smiley face on chosen part of body (tummy works best for this) and inject the face. JDRF make diabetic teddy bears (Rufus and Ruby) for children. They have patches on injection sites and children love "injecting" their bears. Try googling the JDRF website or ask your nurse. My ds is nearly 10 and still takes his Rufus to bed with him.

As for the tomato soup, go for it!

I'm glad your ds's nursery is being so cooperative. That's really good news.

The CWD mailing list is really variable - on Monday night there were 75 emails when I logged in, yesterday about 12.

Paddy,

We were told to "eat to appetite" when ds was diagnosed in 2002 and correct high blood sugars with novorapid if the mixtard dose wasn't enough to cover. But carb counting is back in fashion now for basal/bolus and pump users and is now beig taught in hospitals. As ds also has coeliac his food choices are quite limited, especially when we eat out, so I often just go by instinct/experience. But if we are trying something new I weigh and measure it so I can match the insulin to the food, rather than eating to feed a standard dose of insulin as Millie is being asked to do by her hospital.

Hi Tangarine & Lisa ... hope your DS is better now Tangarine. It's horrible to see them ill.

We're struggling today ... took DS2 to the Dr and he's on an antibiotic - chesty with a red throat. He hasn't wanted anything to eat or drink all day which is pretty stressful from our end. His blood sugars have been high enough to carry it until this evening when he went down to around 7 before his insulin. Has probably had 5-60 mls of apple juice and an ice lolly plus about 30mls milk. Is in bed now - temp is pretty high - and we'll just have to keep checking him throughout the night though heaven knows how we'll get anything into him if/when his sugars go too low. Oh the joys.

Your explanation of insulin & sickness makes sense to me Lisa.

Hi Millie,

Your ds sounds very poorly - I hope he gets better soon. It sounds like you are in for a long night. My ds is a bit better now - at least with the pump we can give extra insulin when he is high without him needing another injection.

Something else I forgot to mention is a book called something like "Diabetes in Children and Adolescents" by Dr Ragnar Hanas. My copy is out on loan at present or I'd offer to send it to you. It's the best book ever. Really clear and simple to read with lots of illustrations. I'd recommend you (and anyone else on this thread who doesn't already have it) to get a copy.