Newly diagnosed and STARVING

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justlikethehotels

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Morning all!

My 13 year old daughter was diagnosed with Type 1 last week.

She went into hospital having been drinking quite a bit for a month, a huge amount for a fortnight (I did make an appointment for Monday with the doc but it was a week before I could get to see someone and at the time I didn't know that drinking a lot was a medical emergency). On Friday she came home from school and started vomiting and generally sleeping a lot so by the time the appointment came on Monday she was really quite poorly. Thankfully the doc was on the ball and we were straight to hospital where, after an insulin injection (her keytones weren't as bad as they thought) she started to perk up.

Apparently we were all set to be discharged on the Tuesday when she began vomiting again ... this time some kind of a bug, which meant she couldn't keep down food or liquids and was put on a drip. After about 15 hours of sleep she woke up hungry and has pretty much stayed that way ever since!

She has always been slight but since she's come home we've can really see how much weight she's lost and although her figures are pretty stable and acceptable she's absolutely STARVING ALL THE TIME! Bless her ...

She's had a good appetite prior to diagnosis - would always eat 3 meals a day but not huge meals and grazed between them. We're now finding two things hard:

1-Trying to control her chocolate intake, especially at this time of year when most of her friends had bought her chocolate Christmas presents.

2-Trying to fill her up, get her to gain a bit of weight, but without snacking!

We've been told to keep a food diary so the docs can work out how much insulin she's going to need and that she can currently eat whatever she wants (including chocolate) at mealtimes with insulin but only 10g of carb snacks otherwise. Now that sounds easy, but when she's never been a "gorge until I feel sick" type of girl, and we've always encouraged her to eat enough but not overeat at mealtimes she just doesn't seem to be able to stay full throughout the day.

I cook from scratch every day so she has a varied, and I like to think fairly healthy diet with nearly five portions of fruit and veg every day. We're trying to limit chocolatey things to once a day as a pudding. She has a good breakfast, lunch and dinner and is now trying to eat even more at these times to fill up - but surely that can't be good either. Certainly I find the more I eat the more I want to eat.

Now she's broken up from school all she can think about is when she's next going to eat and it's breaking my heart that she's becoming obsessed with food and is so hungry.

She apparently "cheated" a little yesterday as she was so hungry and had two snacks together. (She told me later in the day.) Her blood sugar, having been stable at between 6 and 7.5 since Saturday shot through the roof before tea to 11.4.

Any suggestions? Can she have for example lunch at 12.00 followed by a 10g carb snack at 1.30 and if she's still hungry have something that has virtually no carbs (eg chicken) at 2.30 or will this affect her levels? What 10g carb snacks to people suggest that will fill you up and keep you full?

I've spoken to the diabetic nurses and to dieticians but everyone seems to give a slightly different answer and it's so confusing!

Any suggestions gratefully received! Thanks
 
Only thing I can think of is extra protein & vegetables with her meals. It looks like her body is back to pre-diabetes with her appetite returning and wants to put back on the weight she had lost due to diabetes.
 
Hello and welcome.

Don't worry about putting things in the wrong place. Someone will move it if you do. In
this case you might get more replies by posting here as not everyone visits the parents section.

If you haven't done so have a look at this link

http://www.diabetessupport.co.uk/boards/showthread.php?t=10406

There is also a group set up to support parents at

http://www.childrenwithdiabetesuk.org/

they may be able to help you with advice re schools that type of thing.

Diet is a tricky thing as it varies so much from one person to another - some people are affected by carbs more than others and she could be in the honeymoon period where levels will drop.

She will need to carry some fast acting carbs (dextrose tablets or the like or lucozade) and a snack in case her levels fall.
If she is hungry then no carbs snacks should be OK, quite a few people on here have nuts. Some people feel hungry when their levels are high.
 
Welcome to these boards, and the club no-one wants to joun. Some parents will be along soon to help you, I hope. In the meantime, Margie's links are a good start.

Don't worry about posting in the wrong place - you have enough to be genuinely concerned about with your newly diagnosed daughter, so don't worry about what doesn't matter.

While it is frustrating that all the diabetes specialist nurses and dieticians have slightly different approaches, they probably basically say the same things - my pragmatic approach when I'm faced with conflicting advice (not just for diabetes, but also other medical, financial, career issues etc) is to decide who I trust most and follow their advice, while being willing to adjust as situation and my own experience change.

In particular, the approach is different depending on which insulin regime she is using - 2 injections of bimodal insulin per day need injections and meals of the same carbohydrate content each day, whereas MDI (multiple daily injections) offer far more flexibility in timings and contents of each meal. Insulin requirements also vary with things like exercise, air temperature (so walking to school in winter needs less insulin or more carbohydrate), infections, honeymoon period (first year or so from diagnosis) However, both systems need an understanding of carbohydrate content of meals. The honeymoon period means that the first year is particularly unpredictable, which feels particularly unfair!
 
Hi, welcome to the forum 🙂 What insulin is she on exactly? It sounds from what you say 'she can eat what she wants at mealtimes with insulin' that she is on a fast-acting insulin with her meals and also a slow-acting insulin as a 'background' (this deals with glucose released by the liver throughout the day and night). If so, then this is the most flexible regime.

After I had been diagnosed I felt EXACTLY like your daughter! I could not get enough food, and since I was in hospital for 8 days it was extremely frustrating not to be able to just go to a cupboard and get something whenever I wanted - thoughts of food dominated my every waking moment (and I was awake for most of the 8 days and nights!). I was the same when I left, and now had access to all the food I wanted, but I did try to fill up at main meal times so I didn't need extra injections for large snacks. I lost a lot of weight prior to diagnosis, so needed to put it back on so I wasn't worried about that aspect of things. After about a month the cravings subsided and I had returned to my normal healthy eating habits, so hopefully this will happen with your daughter. It is logical when you think about it - whilst your daughter was undiagnosed her body will effectively have been starving since it would not be able to use the energy from her food properly. Her brain wouldn't have understood this was because of diabetes and would have tried to adapt to the situation - now it is trying to adapt to a more normal situation again.

I would suggest non-carby snacks like nuts if she likes them, or cheese - things like that rather than sweets etc. These will fill her up quicker without affecting her blood sugar levels.

I would highly recommend getting hold of a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas - known as the 'Type 1 bible' and an indispensable guide and reference.

Please feel free to ask any questions you may have - nothing is considered 'silly', so ask away if it is confusing or concerning you! 🙂
 
Thanks for the replies and suggestions.

I'm sitting here weeping a little again! I know it will all be OK in the end but I'm a bit overwhelmed today! It's taken me 2 hours again to work out what carbs she's eaten in the last two days ... I can't ever imaging working it out before she eats! And then she's going to have to get her head round it too!

She's taking novorapid currently 3 times a day with meals and levemir in the evening. Am going to speak to the nurse later and ask about giving her an additional does of novorapid with a bigger than 10g snack at bedtime to try and take the hunger away...

Have ordered the book recommended! Gotta love Amazon 🙂

Thanks all - no doubt I'll be on here again ... and again ... and again
 
HI jlh. Welcome 🙂

Sound advice. I would be careful with giving novorapid at bedtime due to a certain degree of unpredicability with her being so newly diagnosed. Better to snack mid evening, if you're going to do it. But speak to the DSN before doing anything.🙂

I would imagine her BGs are still a bit high and fluctuating, which may be why she's not putting weight on/feeling hungry. Until she acheives some stability, her body may not use all the carbs she eating properly. A bit like pre-diagnosis, unless you're happy she's mostly within range, in which case it is just a matter of time until she catches up.

Not a good time for diagnosis, but when is (I was 13 but diagnosed in Feb, so not so bad) ? 🙄

Rob
 
justlikethehotels said:
Thanks for the replies and suggestions.

I'm sitting here weeping a little again! I know it will all be OK in the end but I'm a bit overwhelmed today! It's taken me 2 hours again to work out what carbs she's eaten in the last two days ... I can't ever imaging working it out before she eats! And then she's going to have to get her head round it too!

She's taking novorapid currently 3 times a day with meals and levemir in the evening. Am going to speak to the nurse later and ask about giving her an additional does of novorapid with a bigger than 10g snack at bedtime to try and take the hunger away...

Have ordered the book recommended! Gotta love Amazon 🙂

Thanks all - no doubt I'll be on here again ... and again ... and again
Click to expand...

It's very early days - no wonder you feel as you do! Don't worry, it really does become much easier as time goes on. You will begin to know familiar meals instinctively after a while so the carb counting will become less daunting. It's great that you have found this place because you have hundreds of people who have all sorts of different experiences they can share with you, to answer your questions and allay your fears. We have quite a few Mums with children your daughter's age so lots of direct experience of the ups and downs for you to draw on 🙂
 
justlikethehotels said:
Thanks for the replies and suggestions.

I'm sitting here weeping a little again! I know it will all be OK in the end but I'm a bit overwhelmed today! It's taken me 2 hours again to work out what carbs she's eaten in the last two days ... I can't ever imaging working it out before she eats! And then she's going to have to get her head round it too!

She's taking novorapid currently 3 times a day with meals and levemir in the evening. Am going to speak to the nurse later and ask about giving her an additional does of novorapid with a bigger than 10g snack at bedtime to try and take the hunger away...

Have ordered the book recommended! Gotta love Amazon 🙂

Thanks all - no doubt I'll be on here again ... and again ... and again
Click to expand...

Don't worry about the tears - or getting your mind around counting carbs. You may still be in shock from the diagnosis and then overwhelmed by everything you are learning. Added stress from Christmas preparations and its no wonder you are having difficulty thinking straight.

Cut yourself a bit of slack and let yourself come to terms with things. Things will get easier. It may not seem like it now - but slowly it will start falling into place.
 
Hi justlikethehotels and welcome to the forum , your story reminded me so much of mine i was diagonised at 10 years old and lost lots of weight , its all very daunting at first and i should imagine like i was very scarey for your daughter i just wanted to reassure you that it does all start to fit together and does become better but just takes a little time 🙂 Im now 31 years later and 41 years old with 2 sons 19 and 13 and doing well 🙂 You will get lots of advice and suport here so try not to worry 🙂
 
Welcome to the forums justlikethehotels 🙂
 
Hi JLTH, welcome to the forum from me as well. 🙂 This is a great place to be, a mine of information and a source of support and comfort.

I suppose your daughter goes online? She might like to join The Insulin Gang, a forum specifically for Type 1 children and adolescents.
 
Welcome to the forum 🙂 x
 
Well, yesterday was ... interesting!

G had her first tears and I heard her say "why is it always me" for what I'm sure won't be the last time (she's recently been diagnosed with scoliosis too and, has reduced lung capacity as a result of a condition a birth and her heart is on the wrong side).

She's also getting very nervous about injecting - she's very thin naturally and since she's lost weight she's go absolutely no fat so I think it's hurting her - but she's beginning to panic about doing it. I've asked her if she wants me to take over for a bit but she doesn't.

We attemted our first carb counted insulin dose yesterday before dinner on the advise of our nurse - 1 unit of insulin to 15g carbs ... took blood sugars two hours later - they'd shot up to 15.9 from an already high 12.3 ... I made an attempt at disguising the panic as I phoned the hospital for advice!

We also went to a party and attempted a bigger than 10g carb snack with insulin ... that didn't work too well either! Sugars came down to but then rocketted back up to 15.9 before bed ...

And to top it all, because we were at the party and all lost track of time we were late with the Levemir by an hour ...

On the upside, her ketones which she tested as she'd had 3 higher than 10 readings, were 0.

I think it's safe to say we've had better days!
 
Hi, I was extremely skinny when diagnosed - 28" waist and 8st instead of my more normal 34" waist and 11st! So I can appreciate that she may find injections difficult to start with. If she tenses before injecting then that will probably make it hurt more, but it's difficult not to tense up when you are new to it :( Has she tried injecting in her buttocks? Most people have more flesh there. Obviously not practical when she is out and about. Some people also inject in their upper arms (at the back) - has the DSN explained all the possible injection sites? There are other things that might help - rubbing the injection site with an ice-cube beforehand, or possibly trying different sized needles - what size does she currently use? They range from 4mm to 12mm.

As for your carb-counting attempt, I think you did very well! Remeber that it is the relative rise in levels, not the actual level that is important, so she actually rose less than 4. As time goes on you will build up better experience of how different foods affect her. Timing can also be important e.g. I usually try and inject around 15 minutes before I eat so that the insulin can get working as my food starts to digest - again this will come from experience, so don't despair at this stage, just record everything for future reference 🙂

It's very early days yet, and it sounds like she will probably need to increase her levemir dose so that her 'base'/fasting figures are generally lower - that is, when she wakes and pre-meal. No-one achieves all this overnight, so remember - it's a marathon not a sprint, and you are both doing really well! 🙂
 
hi, just wanted to say hi. my son was diagnosed on the 3rd November 2011, he is aged 10. i can remember the nurse explaining the carb counting in the hospital and i just thought to myself "i cant do this". My partner works away from home and i just knew it would be down to me. i, like all other ppl on her, know how you are feeling. I am new to this forum, but it has been a big help to me xxxx
 
One other thing she could try anyway, is 'pinching up' the skin and bunging the needle into the raised up bit. It separates the skin and any underlying fat from what's underneath, the idea being you actually get the tip of the needle and hence the insulin into the gap between the skin/fat and the underlying structure.

Plus if your skin is clammy (and I suffered from that a LOT when first diagnosed) then it will hurt more often than not. If she's home, I recommend a hairdrier on 'cool' aimed at the spot for a few secs prior to doing the deed. Also useful post shower/bath when you are a bit damp generally, or in hot weather.
 
Hi justlikethehotels,

Welcome to the forum 🙂

I only joined (20/09/2011) 3 months ago, im always on here asking questions about this, that & the other & the response & help you'll get is fantastic, believe me you've joined the best place!

Good luck with / for your daughter 🙂

Gill
 
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