Honeymoon and illness

Yes it does settle down after a time, the first few months are by far the worst but it does get easier. Make a list of things you want to ask the DSN as you'll likely forget on the day if your anything like myself.

Gemmablower said:

Thank you, she is well and that's the main thing, it's just so intense! And then I feel like I'm doing a degree in diabetes/psychology/ nutrition alongside it all! Oh and my child is the test subject! No room for mistakes there. Think I'm having one of those days today!

Yes one of my many questions for my nurse, good Idea I will make a list. Want to ask her about a dafne course do you have to pay for this? does it teach you about the effects of fats, proteins etc? Is it good training or is there better courses out there?

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I'm sure you have to be 16 or older to do the DAFNE course, but I'm sure they have a carb counting course for children. They don't really go into any great detail about how fats and protein can effect bg levels on the DAFNE course I'm afraid.

The following is an on-line version of the DAFNE course that will give you an idea what a carb counting course is all about:

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

Also found the following:

http://www.idf.org/sites/default/files/attachments/HI62553-Carbohydrate-Counting-for-Children.pdf

Gemmablower said:

That's strange So parents can't do the dafne as child is under 16?
Thank you for the links I will take a look now x

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Ask the DSN this week Gemma, they'll give you a definite answer.

Hope things settle down soon for your child, your doing the right thing asking lots of questions and looking for more information so well done you, I can't imagine how hard it has been for you and your family having to cope over the last few months.

Best wishes.

Hi Gemma, experiencing the same im afraid. My son was diagnosed just over 2 month ago. I just felt like i was getting on top of it and he got a bad cough and cold and his blood sugars were running high. Since then he has jumped from very small doses (0.5 for most meals) to still sitting at 18.8 some days with 3.5 units. Back to making a diary to try and get on top of things and doing a carb counting course very soon. Its soo frustrating because i get so upset when i dont get it right for him, he is only 5 no doubt when he is back to school his insulin requirement will go back down with him being more active. I am also hoping it calms down and gets better. Fingers crossed!

Just incidentally... Always keep a log book for referring to with children... I see nicolaryan09 says back to making a diary... This should always be done as you need to see how different foods, exercise, illness etc affect levels and even when they are at school for the teachers or assistants to write in to, and you may well see patterns that weekends need different rates to weekdays etc.
Although with most meters and pumps they hold blood readings etc there is a need to keep detailed diaries for DSN's etc to work out whats going on.
It may be that certain foods may cause levels to raise ilor drop but unless you write down these details for reference you won't see patterns etc..just what you think of on the day but 3 months on and that day can be forgotten..
Please always keep a diary.

donnellysdogs said:

Just incidentally... Always keep a log book for referring to with children... I see nicolaryan09 says back to making a diary... This should always be done as you need to see how different foods, exercise, illness etc affect levels and even when they are at school for the teachers or assistants to write in to, and you may well see patterns that weekends need different rates to weekdays etc.
Although with most meters and pumps they hold blood readings etc there is a need to keep detailed diaries for DSN's etc to work out whats going on.
It may be that certain foods may cause levels to raise ilor drop but unless you write down these details for reference you won't see patterns etc..just what you think of on the day but 3 months on and that day can be forgotten..
Please always keep a diary.

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When Ryan was first diagnosed we kept a very detailed diary. As advised by the hospital. Ryan is on set doses at the moment and once he was stable i was advised it wasnt nec to write every single thing down anymore. Of course i write a list of things that seem to effect his blood sugar more than others, or what i feel is nec! But as he is on a set dose im not going to forget what insulin he had! Hence the reason for stopping the detailed diary. Now those set doses are no longer working we are back to the detailed diary so we can make the adjustments that are needed. And see the patterns of which doses need increasing. Ryans dad is also diabetic so although Ryans diabetes is managed differently we are quite aware of most things and a lot isnt new to us. We are in constant contact with the diabetes team who i must say are fabulous! And if im ever unsure i always ring them. His school diary is always filled in by his school everyday and i must also say they have been fantastic! Once we are carb counting and his doses are changing meal to meal then a day to day diary will be kept. I do everything and more i am asked to do by the diabetes team and he is a very well looked after little boy.

Aaah, makes sense now. It was just reading "back to diary" - sorry.. I just was concerned that you may have been told that the hospital could rely on downloading a meter or something. Not trying to teach you how to suck eggs.. Honest!!

Not to worry..we caught Ryans diabetes very early because we noticed the signs straight away (sad to say...we always watched for them fearing he would develop it like his dad and grandmother) but because he was caught soo early he had no ketones and was well in himself. He didnt start insulin straight away and has been very sensitive to it until now. He is neg for antibodies although we still believe him to be type 1 and he is being tested for MODY later this month. Im not expecting him to be diagnosed with anything other than type 1. But this is why hes been on a set dose because 1 unit dropped him by 33. Using a pen you dont have a lot of choice between 0.5 or 1.0 unit so it was impossible to carb count. Now his requirement seems to be going up we have been booked on the carb counting and im looking forward to it if im honest. Because at the moment its guess work and i hate guessing. And i get soo upset with myself if i get it wrong and hes high. Its all still a bit raw if im honest. Still praying for a cure.

Yeahh it can be very frustrating. 0.5 was fine with upto 35-40g with Ryan. Then all of a sudden it all changed. We have had to put his insulin up and started working on the idea of 25g to 1 unit. yet today after lunch he dropped to 3.2 after 1.5 units with 40g. I didnt want to give him 1 unit as that wouldnt of been enough..2 units would be too much...so i went 1.5 and he dipped anyway Ryan doesnt say he feels rubbish when he is running high but his behaviour gets bad. Is it just the thirst etc that makes ur little one feel rubbish? Or does she have ketones etc? Can i ask...is she hungry all the time? They told me it was normal when they are first diagnosed but he is still always hungry. Inbetween meals he cries sometimes for food. There isnt much in the way of snacks for them if they are runnin high is there?

@Gemmablower it has jumped for some meals. Breakfast its gone from 0.5 to 1unit but dinner and tea have massively jumped. 1 unit is usually tea but 3.5 units wasnt enough for tea on monday. Yet today 1.5 has dropped him. Iv spoke to the nurses a few times a day all week. We have no idea whats going on. With tea tonight he had 0.5 as advised by the nurse as he went hypo after dinner and plays football tonight. He had his usual 10g bag of haribo and when he came off the pitch at 6pm he was 11.5. But an hr ago he became hungry and sleepy so we checked and he was 5.3. Hes had some supper to stop him droppin durin the night. Im lost as to whats happening. Surely if his insulin requirement was going up it shouldnt go back down again? Or does it? Diabetes likes to keep you on your toes.

So do you give insulin with snacks or do you just allow her a snack when she is low enough? Ryan was diagnosed on 5th Feb and the hunger thing is no better. Maybe hes having a growth spurt :/ his Thyroid was slightly high on diagnosis im not sure if that can effect your appetite? I have my fingers crossed that has gone back to normal though so hopefully it isnt that.

Ahhh so you notice the signs when her blood sugar is high. I can only tell with Ryan as he gets cheeky has drinks the sea dry. He still doesnt know when he is low though. He just says he is tired so we check. Or he goes very quiet which isnt Ryan he is a chatterbox, so we know to check it.

Yes fingers crossed we both get back on track. Like you say...we are doing everything we should be so hopefully it improves.

It is nice to speak to someone who is in the same situation. The nurses are fabulous and are obviously the experts, but it doesnt stop me from feeling a bit alone in it all when there isnt anyone to speak to who lives it (if that makes sense) So sorry if you feel like iv asked to many questions or talked too much ha xx

Ohhh good im pleased! Ha, i dont want to talk your head off.

No the haribo isnt to treat the hypo, he has dexy tablets if hes low. He has one of those tiny 10g bags of haribo before football. He runs constant for an hour and if he doesnt he goes very low and continues to drop over a few hours after he has stopped playing. At first we didnt use the haribo...but when he came off he would always be low 4's. We would give a snack and by the time he got out the bath he would be hypo. So we started using the haribo before he plays. So far it is working so fingers crossed it stays that way.

Ahhh wow thats really interesting! I havent come across that yet. Is it just a plain biscuit? Ryan has some cereal for supper but it always knocks him up a bit. Its hard not to give anything before bed though with the worry of them dipping during the night. Do you check her over night once she is asleep?

When Ryan is at school he always has fruit snacks, he would dip without them even with 0.5 for breakfast and dinner. He has the most hypos at school by far. Bananas work great for him, a small apple or satsuma. But when he is off school i cant give him those snacks because he runs higher. So he either has a small bit of cheese and maybe some ham or scrambled egg. But i cant give those every day. I dont know whats going to happen when hes back at school now though with the way his bloods have been.

Something i have noticed (although the nurse and doctors are not convinced) is that on a Sunday after Sunday lunch his bloods creep up and he is really quite high by Sunday night. Im convinced its yorkshire puddings!! I cant see the veg or meat causing a problem. So i try to avoid him having them now. Pasta is a tricky one at the moment to.

Does she ever have treats or are you hanging fire with those? Ryan doesnt have any (although he gets really excited for his haribo before football) but chocolate is a total no go. 99.9% of the time it doesnt bother him, but easter sunday he was a bit down about it. Its mostly that he cant eat what he wants/when he wants that frustrates him.

Do you give her insulin before she eats or after shes finished her meal? Xx