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What to do type 1 diabetes mum(22 Posts)
My sons is 2 years old and has been diagnose with type 1 diabetes he has had in for 5 months now I'm sort of coping but I'm still not 10 percent getting my head around it the past 2 weeks we have been introduced to carb counting which is not going very well at all but ATM I'm at a bit of a dead end with his eating habits he used to eat so well anything he had he would clear his plate but at the minute he is refusing to eat his meals and picking at other peoples meals in the household he has insulin 3 times a day with his meals (nova rapid) and (levomere) as a slow acting through the night I'm aware with every meal he has his insulin but what do I do if he refuses to eat his meals ? He's been having hypos always today and as soon as there stable and it comes to me testing his sugars again before his meal he's low again I'm just really stuck as what to do to get him to eat do I just leave him and not give him insulin if he refuses thanks ?..
I think you're going to have to carb count what he actually eats and give the insulin straight after the meal. If it continues to be a problem, you can get faster acting insulin (apidra) which may help.
Are you also sure his levermir isnt too high? You say he is hypo before meals which could be his levermir needs reducing too.
He may still be in the honeymoon period (when Type 1s still retain a little insulin production). Try reading "Think like a Pancreas" or Dr Bernstein's diabetes solution (www.diabetes-book.com) - both incredibly helpful books for the newly-diagnosed (or their parents). to you, it's a lot to take in but you will get there
I'm still new to the carb counting I've only just learnt how to do it and not 10 percent so his diabetic nurse has given him levels of insulin to take but told me not to worry about the carb counting to much ATM only today he has been having hypos which has made me think maybe it's a bug he may be coming down with which may lead him to not be wanting his meals he's eating but it's kinda of hard to count any carbs when he's picking of mine and my partners plate his insulin doses are constantly changing ATM
Were you given sick day rules?
What are the FPG readings atm? Keep an eye on them, too low and you may need to adjust the dose of Levemir downwards. Conversely too high might be indicative of a nocturnal hypo.
Diabetes is paeds is v tough so don't be hard on yourself. DS is still very young, but many children that grow up with diabetes learn to balance insulin, carbs and exercise. The sooner you can get him cycling, the better!
Have you got the carbs and Cals book? It's good, lots of pictures. Also a good set of scales to help you measure food and then a nose in said book makes it a bit easier.
After you've been shopping try and work out the carbs in foods so if he has a bag of crisps you know exactly how many carbs straight away. Just little things to make life a bit easier.
Good luck to you. Hopefully your sons hypos will lessen and you get used to it all.
My child does not have Type 1, but I myself do, for several decades now.
I think the utmost priority here is to try to avoid or minimise hypos.
Avoidance of high blood sugars and trying for optimal blood sugars definitely need to take a back seat.
In your position I would give nova rapid only AFTER he has eaten (when he does eat). That way you can see how much has actually been eaten, and give an appropriate amount of insulin.
You will get a bit of a blood sugar spike after the meal as ideally the insulin should have been pre-meal, but the alternative is getting into a situation where insulin has been given and then food is not eaten - or only a little bit is eaten. That is way too risky, health-wise, as you will end up with bad hypos.
If he doesn't eat at all, then no nova rapid. If the slow acting insulin dosage is right then his blood sugars should remain more or less stable like this.
Oh, and a hug from me.
The whole insulin/carbohydrate/blood sugar business is tough. The learning curve at the beginning is very steep, so things do get a bit easier later on, but there will always be random things throwing a spanner in the works.
He woke up at 2.7 I treated with jelly babies then he went up to 6.1 he then ate all of his breakfast by dinner he was 3.3 went to 3.6 then 6.5 I treated with jelly babies and tested every 15 minutes as I was told and then gave him his lunch which was a ham sandwich he refused his lunch so I didn't give him his insulin as he didn't eat he was a bit agitated like an hour later so I tested again and he was 13.3 I didn't expect his levels to rise as he hadn't eaten he then had 2 biscuits which I gave him 3 mil of insulin for as I was told 13.1 and over to give him 3 mil by tea he was 2.9 then went up to 4.8 after treated he had pizza for team but picked and barely ate it but he ate a yogurt and managed to pick off my plate which was a fair amount so he had 2.5 mil his levomere at the minute is set to 1.5 which he's had I'm yet to check his bedtime bloods which are due at 9 hoping he isn't low again he has a sliding scale so his doses aren't set to a specific number they all depends on his glucose readings
Just read your second post.
Usually, blood sugars are inexplicably high, not low, when coming down with some sort of bug. Usually the day before symptoms start showing is the worst.
It's difficult to unpick whether DS has a sickness unrelated to his diabetes or off his food because of his hypos (some of his readings are very low, the FPG worryingly so).
In your position I would be speaking to the DSN tomorrow as a matter of urgency.
Just to add that I really feel for you and DS, OP xxx
Are you being coached by a doctor or nurse? Because at the moment I would email them everything every single day till he has stabilised a bit more. He is having a lot of hypo's. I think he went too much down from the 13 so next time give him a little less. Write down in a journal what you are doing and why. You will learn from this.
I second the injection after the meal. Try to calculate how much he is eating. Maybe you could put a digital scale next to your plate and if he picks something then you put an estimated same amount on the scale to weigh it. Later you can calculate how much he ate. It will never be exact. You will get bettwr at estimating. Try to stick to simple foods right now like bread and potatoes. Rice and noodles is more difficult to estimate amounts.
Anyway, type 1 myself, no kids. You will get more relaxed about this when things stabilize. It gets easier. You might want to get some glucogen just in case as a back up.
And as a response to your third message.
The high of 13 was almost certainly a reaction to the earlier low.
This type of reaction usually occurs a few hours later, is completely a reaction to earlier low blood sugar and is not affected by whether food was consumed or other factors.
You have to learn, basically by experience, how long such a high will last as, in my experience, it differs for different people. You also have to be wary - the sliding scale notwithstanding - of treating such a high as 'high' and giving a lot of insulin to bring it down, as it may well have been about to start coming down of its own accord, and by giving a fair bit of insulin you will bring about a new hypo and the whole un-merry cycle of ups and downs will continue.
Whenever in doubt, aiming to end up with a somewhat too high blood sugar is better then one that is too low.
And I second the advice of speaking with someone as soon as possible.
Orange and apple juice is high in carbs. If he is low and doesn't want to eat try to give him this to drink.
Yes he has a diabetic nurse I will be getting in contact with her tomorrow as quite worries that he has been having hypos all day this is the first time this has happened since he was diagnosed he has a diary where all of his levels are wrote down the estimating on the food is the only thing I can do as he's a very temperamental 2 year old and will do as he pleases I have glucogen but I'm as of yet to use it
Sorry your having such a hard time. You need to speak to his DSN, hypos are dangerous. If you go on Diabetes UK website they have a forum dedicated to parents with children who are diabetic, lots of really helpful advice. Type 1 Diabetes in Children Adolescents and young people by Ragnar Hanas is a very good book.
To be fair I find it hard to control my blood sugars as an adult, it must be bloody hard due to his age and the unpredictability of his eating. You're doing the best you can, its all a massive learning curve
Just keep in very regular contact with his nurse in these early stages. 2-3 times a week is fine, it could be email or phone contact. Just see what she prefers.
I couldn't get on with carb counting. I did it for years and always felt like my diabetes ruled everything. Even though carb counting should give you the flexibility to eat like a normal person, I just found it too much to think about. I have recently switched from this to two injections a day, which are pre mixed. It just means I have to eat three set meals a day.
However if carb counting is for you I would recommend some scales that work out carbs for you. Also my fitness pal tells you the carbs in food.
Your Poor DS, I was diagnosed at 5. I hope it all works out for you. Use the diabetes team/clinics to help.
It may have been said already, as I haven't read all the posts but I split my background insulin, a dose at bedtime and more in the morning, I was told it would give me finer control and it seems to have worked. Perhaps you could check this with you nurse.
I hope you managed to get some answers from his DSN, but just to say that if he is waking to a low (probably even if it's just two days in a row), I would be looking at reducing levemir. It also sounds like his correction dose is too much. By mil do you mean units or is he on some sort of diluted insulin do you know? For example for my DS who is 10, 1 unit will bring him down 5mmol (so would be the correction dose we would use at 13 mmol). But he is on about 7 units of basal (long acting insulin). Ask for proper training on carb counting. As pp say, get Carbs and Cals and some good scales. It's a lot to take in but good when you get the hang of it. Make sure your DSN is supporting you. You may need to shout for the help I'm afraid. Hypos and hypers are perfectly normal with Type 1, but that's too many hypos. Also, I wouldn't start with the Bernstein book - too much to take in so ignore for now - but Think Like a Pancreas is good. Big hugs to you. Come and join the CWD group or Parents of Children with Type 1 in the UK if you are on Facebook. I've learnt so much from those guys.
Agree with coming & finding CWD Facebook group. Lots of people on there for support.
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