Honeymoon and illness

[Gemmablower]

My little girl has been diagnosed for 3 and a bit months now, she went into remission pretty quickly. Her levels have been very stable unless I got tripped up on the odd High Gi causing a problem but have managed to figure out what's caused the blip, learned from it and carried on. She has had a few coughs and colds since diagnosis and every time I see her insulin requirements rising during the illness and then after, permanently! So again a tweaking of ratios one by one and off we go again, I just feel sometimes it's never ending! Soon as you have it sussed (can't be spot on everytime but close) and then diabetes decides to throw a spanner in the works! Seeing the nurse this week but so bloody frustrating Does it calm down?this rate of change? In the space of 3months we have gone from extreme highs and insulin resistance after diagnosis, quickly turning into honeymoon and paying catch up with lowering insulin requirements and then illness effecting everything! Please tell me it gets a little easier and you are not always playing catch up?!?!

 

[noblehead]

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]

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.

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?

 

[noblehead]

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?

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]

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

 

[noblehead]

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

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.

 

[Gemmablower]

Thank you for all your advice you have been very helpful as always.

 

[nicolaryan09]

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!

 

[donnellysdogs]

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.

 

[nicolaryan09]

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.

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.

 

[donnellysdogs]

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!!

 

[nicolaryan09]

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.

 

[Gemmablower]

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.

Yes my little one was the same half a unit and 25g kept her very steady and a unit would drop her a huge amount so caution and accurate calculation was always taken when I gave her a unit in order to correct but now it's all changing here and have spoke with my nurse about adjusting ratios before I went ahead with anything and we are slowly getting there again. It is frustrating though because in the meantime she feels rubbish

 

[nicolaryan09]

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's so tricky isn't it, I'm no expert but that seems like a huge ratio change if it was done straight away. 0.5 unit and 40g to then go to 25:1. I would talk to the nurse again tell her about the hypo and might just need tweaking.
Dealing with such small doses and dramatic effects is tricky to say the least. Yes Zara gets ratty to and I can usually tell cuz she wees a lot and sweats when hyper possibly the ketones yes if she has had a bad day of being low teens for over 4hours and got low amounts of keytones because of it but sometimes she just feels rubbish if she's over 9mmol.
Yes she was extremely hungry after diagnosis but my sister in law coinsidently is an endocrinologist so she stayed with us for a few days and taught me how to carb count straight away and this gave me the flexibility of allowing her to eat to her appetite at the time, apparently she said in order to restore fat and glycogen she would consume something like an extra 3000 calories over a few weeks and bloat out which is an umbelievale amount! So I went with it. The hungry stage was over after about a month and everything settled down then.
It's a lot easier dealing with hunger and snacks now if that's any consolation that bit does get easier.
Fingers crossed we can both get it under controll again soon! I'm sure we will we are doing all the right things. Xx

 

[Gemmablower]

@nicolaryan09 I just re read your first post and saw you had not just jumped to that ratio of 25:1. Just panicked a bit thinking wow that's huge difference and could not, not say anything but I see now that's the progression you have gone through. X

 

[nicolaryan09]

@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

 

[Gemmablower]

Don't feel like you have talked to much at all I totally understand everything you have said and can relate and it's also a comfort to be knowing I'm not alone because you are so right it's different to how you would ever imagine it when you are living and breathing it every day x

Yes it's our dinner time that's changed the most also at the moment.
I don't inject for snacks...
With snacks I keep them small 5/7g carb low gi foods.
Also found that trying to keep the snacks the same carb and limiting the choice gives a bit more predictability, particularly if I'm adjusting insulin and making decisions on ratios.

So every morning at 10am she has blueberrys and blackberries, sometimes strawberrys. 7g
Every afternoon at 2.2.30 she has either apple, plum, pear or berries 5-7g
Bedtime snack is milk and biscuit 11g

Biscuit is high gi but with her whole milk it changes the gi I'm certain of it and does not spike her but if I give her a biscuit alone she launches into hyper space! Isn't that crazy!
This took me a few times to work out but excellent example of how GI can actually effect your glucose, she's actually having more carbs when having the milk but the milk lowers the gi and this suits her great at the moment.

Was the 10g harribo to treat the hypo?
Xxx

 

[nicolaryan09]

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

 

[Gemmablower]

Yes Zara would drop to much without her snacks to.
Yes just normal a malted milk or rich tea. With milk.
We have always been told to do a bedtime snack as she needs to be 10/11 at 9pm check (this check is in her sleep) lantus is only 0.5 and that has kept her waking at 5/6mmol.
(9pm we check as this works out that her dinner novo rapid is out her system near enough by 9 and it's 2 hours after bedtime snack) I don't check after then as lantus ok but I do do random checks now and then to see what's going on over night or if changing lantus dose i would check at night for 3-5 days or longer if getting hypos over night.

Yes she has treats like chocolate. She understands that they are limited the same as all children and come after dinner as a treat (so I can count it) and if she is running around like crazy at soft play she can get away with 10g milk chocolate cadburys freydo bar and it keeps her steady or a few crisps as a treat while running around.
Yes pasta is the tricky one some ppl split dose it I think but not the best idea for a child having 2 jabs a meal think a pump would handle these situations better as you can extend your bolus and split dose etc but that's not for us right now.

Zara has her imsulin after food and before a pudding if having one.
I heard on here and my sister in law mentioned to me that studies on pasta served cold or cooked cooled and then re heated actually helped with the effects of these meals for diabetics.
I have no idea if this works but I'm going to give it a go.
yes that's strange with the Sunday dinners not sure of the effects of yorkshires as Zara has gone off them!
She only ever ate them before diagnosis as was craving the carbs her body thought she never had!
She loves sweetcorn though and has about 10gcarb of sweetcorn so would say that replaces her pots that she also never liked anyway.
She loves her meat and veg on a Sunday followed by a bit of custurd.x