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Honeymoon and illness


Hiya, sorry for not replying sooner i cant tell you how tired i am. My eyes were dropping trying to reply last night haha

No Ryan has 3 Novo a day. Breakfast, dinner and tea. Its with his supper they said i would have to give him 0.5 with if we dropped his levemir which i dont feel comfortable with. He has breakfast 7.30am - dinner 11.45am and hes ate tea and had his shot around 4pm - 4.30pm. So when i check him before supper i know there isnt much novo left if that makes sense. 0.5 with supper would drop him without a doubt durin the night. At one point they thought we would have to drop his breakfast shot because at school he was 2.9 before dinner or there abouts for a full week. Even with snacks. But thats slightly better now. He has 0.5 with breakfast dinner and tea, unless he has a very big carby tea and he has 1 unit.

Im really pleased she has had a good day at nursery. Some normality back for her and you. And that her bloods are coming down.

I didnt realise that Lantus was 24hr and Levemir wasnt. Maybe thats why Ryan is on Levemir..? Who knows ha its something i will ask at clinic.

At the carb counting class yesterday one of the nurses was trying to help us figure out how to stop knocking Ryan high at night and she believes he is producing his own insulin still quite a bit. She doesnt even think he would of been diagnosed yet if we hadnt had the equipment at home and watched for the signs. It meant our carb counting class wasnt very successful i came away feeling really deflated xxx
 
Oh I see you still do 3 a day for some reason I thought you ment you dropped for the evening meal. No I hear you you don't want to be injecting before bed right now I see what you mean now no I wod to want to do that either.

I think the medication you are given sometimes depends on the hospital. My nurse told me if we had gone to the other hospital in our area when diagnosed they would of put Zara straight onto a pump as that's what they do with there little ones. I think the hospitals all differ but it's not broke don't fix it.
Oh so your carb counting didn't go to well I'm sorry to hear that. It's so tricky in this honeymoon period, I can't believe the difference 0.5 a unit is making of lantus!! She now on 1unit breakie and 0.5 lunch and dinner. She has halfed her nova daily intake in theast couple days. It's just worrying me now though that she's going to get lower and lower over the next few days so I am counting so precisely and re checking it's driving me slightly mental! Waiting to speak with nurse tomorrow now.
can work out the carbs in his meals in the day? Least you can practise with the things his eating but I bet you already do that. The book has some info on carb counting which will be usefull to read. Xx
 
I suspect you are maybe going to be in a very similar position as me now lher lantus is 1 unit and you are going to struggle to keep her up sometimes. Ryan woke on 4.1 this morning. And he had a decent bowl of porridge before bed. But as you give her lantus on a morning it might not hit you over night like it does here. They have mentioned changing his to a morning so its running out early hours and he doesnt drop so fast. Im undecided what to do at the minute though.

Yeah...they didnt tell me anything i didnt already know to be honest. The carbs and cals book will help if we are eating out but other than that...i didnt come away feeling like i had learnt a lot. Its hard to carb count on such small doses. For example..Ryan had 35g of carbs for tea and 0.5 worked well. He would need 70g for a full unit...but what happens if his meal is 50g? 0.5 isnt enough and 1.0 is to much. So its impossible to carb count. He still cant have anything over 15g of sugar per 100g.

Ahhh maybe. Just weird his dad got Lantus at the same hospital. I mean its working so its not a issue really ha i was just curious.

Ryan had Oatabix or something for breakfast yesterday. They are by wheetabix and Ryan said they tasted the same but they are higher in carbs. So at school he had a banana as a mid morning snack and was 7.7 before dinner. And came out of school 7.1. Those are much higher than normal but still very near normal range so im a bit happier with those. I might keep those for school breakfast only though. Xxx
 
To be honest it sound like you know how to carb count anyway.
yes I totally agree , even before lantus was increased I found sometimes there just was no ratio but still counted the carbs pretty much like you do it's so tricky.

Having the lantus on the morning still has a peak I'm think and it seems to peak just after lunch time which is why I'm going to find lunchtime tricky I think. Only time will tell.
I think opinions are split even with the doctors on lantus levemir I have heard some prefer to give children levemir and think it's a flatter profile and some say there is no difference in the two, I can only go on what I know with experience about lantus and I don't think it's as flat as they say.
Zara's lunchtime ratio is 40:1 and night time is 35:1 even though she is sent higher at night and I'm sure the lantus peaking at lunch is the reason for this.
I'm glad things are settling down for you
 


Ahhh right i see. Does Zara ever complain her Lantus shot stings or burns?? Craig always says his Lantus shot hurts. But he does have 40 units so maybe thats why..

Yeah its really tricky. You think you are getting the hang of it then it all goes wrong. Ryan had another hypo at school today. He had 2 wheetabix with 0.5 units and he had a apple as a snack at 10am and 11.15am he was 3.4. But he had P.E today so maybe he will need a extra snack from now on. Again the teacher noticed he didnt say..

How did lunch time go today??

Does Zara know when she is low? I know she is still only little but thought i would ask? I thought Ryan would of started to pick up on being low more by now..
 
Today was a disaster, she she had mild hypo before lunch she was 3.6, she hadn't had a hypo since January when she had sickness bug so don't know what she feels like when she's low. I wanted to treat the hypo with just 3G carb of carbohydrate which was lemonade and just check she was rising before she ate. She came up to 4.5 after 10 mins and she ate. as yesterday half a unit and 25g gave her a drop at lunch time I thought if she rises to about 6mmol off lemonade (this was a guess going off her body weight in that book) then she will drop again later so gave her 35g with half a unit and the same snack as yesterday and she absolutely launched up to 20 mmol!!! Nightmare!
Not sure if this is a rebound from having the hypo, do you get that? Or possibly
She would of been ok with 1 unit at lunch! So frustrating.
Corrected her now and hoping she's not to high at 9pm.
She doesn't complain about lantus stinging but heard this is a problem.
She only complains about injections stinging if she has tensed up at the last minute before it going in and she can do that with nova or lantus.
That's so good that the teachers pay such good attention to him. Maybe the banana for PE that worked for you last time didn't it?
I find the choice of food is what makes us on the roller coaster. I keep to the same food for 10am of berries but at lunch time it's hard as different snacks have different effects. Zara can have 10g blueberry and has the same effect or less than 1/2 pear 5g pear of she had 15g banana she would hit the roof so bannana possibly a good one for excercise for us.
Oh gosh what a day! Start again tomorrow. X
 

How much lemonade did you give her?? I have never used full sugar pop for a hypo only 60ml of Lucozade or dexy tablets (which i have everywhere!! In every bag...coat..the car ha) but we often get a rebound high after. But we have always been told to air on the side of caution after a hypo because it isnt a true bm with the rebound high. So often if Ryan hypos before lunch...his tea time shot may only be 0.5 even though he might usually have 1 unit with that meal. It may of been a mixture between the extra 10g with dinner and the rebound high. Ryan hypos a lot though so i think thats why we are extra cautions not to knock him into another hypo.

So im guessing she had the normal things for breakfast which usually keep her going ok? Did you say she has 1 unit for breakfast? Maybe now she would be ok with 0.5?

Ahhh wow banana has a massive effect then? Ryan can snack on a small banana and be ok to be honest. But i defo think ur right and maybe a banana would of been better today over the apple.

Yeahh i find the same. I didnt get wrong at the carb counting session but they pointed out they think im limitin Ryans food choices to things which i know will keep his bm in normal range. And i see where they are gettng that from but its just not the case. He can have whatever he likes. I ask him all the time to try something different but hes a creature of habbit. But i do however try to keep his carb count to one i know i can accuratly match to his insulin. So for example if hes having 35g of carbs which i know will be ok for 0.5 then asks for a extra 10g of carbs i know that will knock him up. So i either try and give him something extra to eat which wont effect his blood sugar or i try to give him more than an extra 10g so he can have the 1unit.

To me thats sensible though? Im not limiting his food choice he can have whatever he wants. But i will try and match the amount of food he picks to his insulin. If i didnt then he will run high and drop all the time surely? :/ xx
 
Yes I know how you feel it is sensible in my opinion. Yes I'm the same really I try and stick to 25g per meal but always bare in mind the effect of half or 1 unit as this can be a big difference and bare in mind an extra 5g with the meal or snack will prob raise her a couple mmol and this works for us to , it's all changing though lantus is going to have to settle down before I can work it out again it's stirring everything up so I don't know the effect of 0.5 unit now but at a guess I still think it drops her with 25g of food.

This morning i think is down to the ratio, it was changed to 20:1 a week before the lantus was increased and now the lantus is back working I think possibly we need to go back to 25:1 so will try this tomorrow my nurse has told me to wait for a pattern so you know it's the ratio not the lantus and I understand this theory but to me someone who works out everything this is sometimes like waiting for something I just know is going to happen so will try 25:1 tomorrow as she is 11mmol tonight and hoping for no hypos in the night so couple of checks and hopefully In range in the morning and hopefully lantus is working as it should.

With the lemonade she had 50ml =3G carbs
Sprite 50ml has 6g carbs so they all are slightly different in there carb content I carry tiny can of sprite with me everywhere for her as I know she would not hesitate to drink a swig of it lol and harribos.
she's two young for tablets, we have the gel for emergencies though.
ok so you would still be cautious of the rebound even at dinner time. This makes sense x
 

The dextro tablets are just like sweets. A bit chalky to be honest. He just chews them. We were advised by the hospital to use them. If he has full fat pop he has to have 100ml to treat a hypo. Im guessing theres a difference because of the age difference. Yeah we have the gel, i keep 1 in his football bag and one by my bed and the rest in his very full medicine cupboard. And obviously the dreaded orange box in the fridge which scares the life out of me.

Does Zara have a multi vitamin she has to take?? Ryans Vitamin D was low on diagnosis so he has this multi vitamin to take and he hates it with a passion!! It smells vile so i dont even want to think of what it must taste like. Abidec or something its called.

Yeahh i totally hear what you are saying. We were told the same. Stick to the same amount every day for the meals until you see a pattern and i just couldnt. Fixed doses dont work i dont think. You cant help but adjust because you know fine well its gonna knock then up or drop them low if you dont.

Yeahh we are cautious after a hypo. But Ryan has a lot of them it seems compared to Zara. Im hoping that stops to be honest. So the nurse always tells us to be careful with his next dose. Xx
 
Ryan must be producing a lot of his own insulin still like you said but this is good in the long run and hopefully pro long honeymoon for you.
So last night 11mmol before bed she was 9mmol at 3am and woke at 7 so I'm happy with that if it's continues she wakes around 5/6/7 now back to getting the morning dose right!
I wasn't really told to stick to a right amount of carb, she was always told she could eat what she likes but adjust your doses accordingly but I found 25/30g a meal is top end any more and she has quite a spike in between meals, it's hard to though she never used to but this has just become a problem before we changed lantus so could of been down to lantus or the fact her insulin requirements were on the rise and becoming less tolerant to carbs?? I don't know. Time will tell but yes it is very hard to stick to set doses right now it's like you are waiting for something that you just know is going to happen!
No she hasn't been given any vitamins to take.
X
 

See thats brilliant thought isnt it. 11 before bed and 7 in the morning. Then she hasnt been much out of normal range during the night. And she hasnt dropped much during the night either. I cant wait until we can put Ryan to bed on 11 its really bothering me having to knock him up so high on a night. Especially when hes in normal range all day it just spoils it.

Im really pleased things are getting better for you. I have my fingers crossed Ryans blood sugar stays in normal today but this is the first weekend since he has been back at school so no doubt i will see a difference.

Hes at clinic monday morning and i have just realised i forgot him meter from school so many things to remember...my brains over loaded ha. I forgot to change his school insulin in his pen on Monday and didnt realise until mid week so had to rush down and change it. Naughty mam xx
 
So much to think about!
Yes I know what you mean the highs at night bother me when you have spent all day trying to control it.
Today so far so good, went back to 1 unit for breakfast 25:1 and 24g breakfast and did the trick today kept her level at 7mmol, let's hope this continues! Only problem is she went sky high between breakfast and lunch 17! Before she dropped back to 7! No idea why this is as her normal breakfast and before she would only rise by 4mmol in between. Need to talk to nurse about that one.

Now the tricky one! Gone for 25g and 0.5 unit aiming for 4/6 mmol pre dinner but this one could go wrong as need to get work out if 0.5 unit is doing what I think it's doing.
Zara's at my moms this afternoon so she is going to check her and see how it's going before her snack. Poor girl having so many checks lately but she's been so good with it.
Dealing with a mild hypo yesterday seemed to lessen my anxiety about them and hearing yourself dealing with them sometimes daily had def helped my fears thank you. X
 
Awww im really pleased about that, if i can help in any way then i will, plus i feel like my talking your head off was beneficial for you ha.

My book came today!! Iv had a quick flick through i cant wait to sit and read it properly.

So...Ryan stayed at his dads last night and he let him lie in this morning so he had breakfast at 11am!!! And dinner at 4pm. I was really upset about this but being a diabetic Craig refuses to let Ryan being a diabetic stop him from having a lie in. This means hes going to have a very late night which to me cancels out the lie in.

At 8pm i checked his blood sugar for tea and he is 21.4. Absolute nightmare!! He had 1 unit with dinner his dad said with 53g of carbs. Iv no idea how this wasnt enough when 0.5 works fine with 35g. So he is having 30g for tea and usually would have 0.5 but i have given him 1 unit. I also give him it before he ate which i dont usually do. His dad wanted me to give 1.5units but i was scared. I have a feeling he isnt going to come down much tonight.

Tomorrow is a new day though and he will be up and have breakfast nice and early so fingers crossed i can get back on top of it.

Ryan always rises a lot inbetween meals. If we check 2hrs after he had eaten it isnt uncommon for him to be high. We were always told its because we are catching the food but if Zara doesnt usually do that then maybe Ryan shouldnt? I will speak to our nurse about that to im pleased you mentioned it. Xx
 
She never used to but I think this was because she was still producing aloot of insulin to cover it. Now it's becoming a problem but will move to that once I have the rest in control!
So eggs in her meal will not give her a spike after meals and boiled eggs the best for her even if with a bit of toast.
Pasta will but again slightly better if with a creamy pasta sauce rather than tomato.
She has a fish pie with potatoes on the top but as it's made with a cream sauce it really is as good as having eggs and get no spike but the breakfast spike is ridiculous she prob needs all morning jabs straight away.
Yes I think you are absolutely right about the timing of injections. Most diabetics inject a while before foods they know that spike them particularly on the morning don't they.
I'm glad your book has come, it's got so much information in have to let me know your thoughts.
Can't believe his dad did that, then again i could see my partner being similar if it wasn't for me drilling things into him.
maybe planning and sending his meals over might help? And few extras incase he needs more for a unit.
It's hard for you but Ryan will soon learn to take control himself. X
 

The thing is Ryans dad should know better. We were still sitting up at 11pm saturday night and im up from before light it just isnt fair. He needs a solid routine for meals. So all of his meals ran nice and early yesterday

So for the first time since he was diagnosed i let Ryan have a little bit ice cream yesterday. I give him a extra 0.5 to cover it and he hypo'd :s ge dropped to 3.4. I cant give any less than a extra 0.5 though so not sure how i could of got round this. I was a bit upset with myself but to be honest...the joy on his face when he realised he could have ice cream totally outweighed the guilt i felt for giving him to much insulin.

So we went to clinic this morning..Ryans HbA1c is 58. Which meets national average but not as low as i would like it. I suspect its because of those 3 bad weeks we had. I told the doctor my concerns over knocking him up on a night. He said long term this cant happen as we will damage him (which were my concerns) but for the minute a tiny bit supper is ok. He also said i have to try and start injecting before he eats. He said Ryan isnt 2 or 3 hes 5 and should eat his meals (easy saying that but theres a reason we inject after..he is still a child) so in going to try my best to start injecting before he eats. He also seems quite kean on Ryan going onto a pump to stop having to knock him up on a night. I have told him it isnt me he needs to convince...i hope im not there when he has that conversation with Ryans dad.

Ahhh right is there a reason for that then? That shes ok with things with egg in? Yeah i inagine a creamy sauce is better than a tomato one. We had to stop Ryan having tomato sauce at one point because he has so much of it. She sounds quite adventurous with her food compared to Ryan! Haha i wish he would eat creamy pasta and fish pie. Does she like a wide variety of foods?

Does she had porridge for breakfast? We dont get a spike with that. Rice crispies we do. Even wheetabix we do but he always comes back down. He had porridge this morning as he was at clinic and he was 6.9 when i dropped him at school at 11.30am.

I still havent had a chance to read much of the book but i will let you know when i do.

Some of his dads bloods have came back and it is looking like Ryan is more than likely type 1 (which we already thought anyway) rather than MODY. Just waiting to see if he has positive antibodies now and if he does they are going to diagnose Ryan Type 1 from his dads results. Im quite certain this will happen xx
 
What a nightmare that night must of been, hope his dad understood your concerns after. It's not fair on Ryan but he obviously doesn't see it that way.

That's good HBA what does that work out to? I imagine Zara's is going to be high as she has been poorly every month since diagnosis with coughs and colds and everytime it's caused a rise in her insulin requirements so not expecting much right now.
I was wondering if my consultant might say the same thing tomorrow about injecting first I have been contemplating doing it at least for breakfast since I last spoke to you to control the huge spike there. It's just getting Zara to adjust to this!
She had always eaten pretty well for a child.
Yes I eliminated weetabix out the cereal list a few weeks ago it just doesn't suit her at all it knocks her up and she stays there. Porridge or shreddies and petite filous yogurt now or m+S do a yogurt she loves so get them still now I realised it's not them spiking her.
Breakfast was always like that anyway apart from the odd weetabix thrown in here and now so not really much of a change.
At least you are clearer on diagnosis what is MODY?
Well done with handling the ice cream, you know for next time and it's hard to give extra bolus while in honeymoon for us I think. I spoke to my nurse and she said if it's just a one off then just let her run high and correct her at meal time for the time being As ice cream can be tricky as some take along time to kick in and I found her rise wasn't till bed time when she had it ice cream 3.30 pm then it hit her at 9pm! I think it's trial and error on what effect it had directly on each person and that's what we are doing, we will get more familiar with these things I'm sure once we see a pattern X
 
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Im having one of those weeks where everything goes wrong!!

So..since i last spoke to you things havent been to bad. He hypo'd at school on Monday (weird i checked him and he was ok before i sent him in so he must of come down quickly) and he hypo'd yesterday at school before dinner (3.4) he had 2 wheetabix for breakfast and a snack at 10am.with just 0.5. So i dont know how i could of prevented it. I really dont think he should be having so many lows.

How did your visit to the consultant go?? Have u started injecting before meals? It is harder for you because Zara is only really little still.

I now inject before meals. Aslong as he isnt like 4.0. If he is i inject after.

So...ryan has never had marks off his injections before...but the passed 2wks or so hes got little dot bruises where hes had his shot. It upsets me when hes in the bath and i can see them all on his little arms and legs these are the only sites we use. He wont have it in his tummy or bum. Do you ever notice her shots mark her?

Yeah with the ice cream he was a little higher than normal by the night even though he dipped before tea. But its hard to know if its from the hypo or ice cream. Maybe a bit of both?

MODY is a rare form of diabetes (maturity onset diabetes of the young) and as far as a understand it, is a genetic thing. If your parent has MODY there is a 50% chance any children you have will have it. If you develop diabetes under the age of 25 and have a parent with diabetes with atleast 2 generations having diabetes etc these are all signs. And because Ryan wasnt started on insulin straight away...had a HbA1c of 61 when he was diagnosed and negative antibodies and so on...they are making sure it is defo type 1. Looking at his dads medical records he was never tested for antibodies. So rather than test Ryan for the gene they are checking his dads antibodies. If he has a strong positive then Ryan will be diagnosed type 1. Im still waiting for those results. But his c-peptide is pretty low so it is looking like type 1 which we suspected would be the case. Xx
 
Will have to read about MODY not heard of it.
We are having the opposite problem, we had a good couple of days of in range and I was thinking great we might of done it and Zara's been waking up high last couple of mornings at 9mmol again and normal ratio at night not bringer her down to 10 mmol at 10pm she ending up at 14 and waking at 9 and also rising during the day again saw the endo hba1c was 12mmol which didn't surprise me they way things have been recently but still disheartening she she wants me to control the spikes between meals like you have been told and check lantus for a few nights again and she asked to start injecting before meals if above 10mmol to control spiking.
Feels so frustrating right now. It's the waiting to see a pattern that drives me insane meanwhile all these crazy sugars are happening that fill me with anxiety.

If she wakes high tomorrow I think I'm going to adjust her ratio at night and see is she still high going tk bed at 10 if I can get her there.
I remember my sister in law saying (also a endocrinologist in southhapmton ) if the lantus is working correctly it shouldn't drop her anymore than about 5mmol over night so can't help but want to try this under some monitoring.
My sister in law was great after diagnosis and filled me with info and bought me that book over and I was on the phone to her a lot but she was taken seriously ill with bacterial meningitis and she's ok and no lasting damage but the last thing she needs is me probing info out of her right now as she's still recovering.
She sent me two libre arm sensors which I have used before with Zara they are cgm but only approved in adults not children yet they are trailing them now in children so keeping my fingers crossed they are on NHS in the next year.
Anyway Zara has one on today and what a difference injecting before is making to the spikes. She hasn't been in range all day today down to something going on but she has stayed flat rather than massive fluctuations. It's tricky injecting before and working out the dose first sometimes when she is high like today but knowing what she's going to eat isn't to bad.
I'm just tearing my hair out though so completely understand how you feel, no it can't be good for him to hypo a lot like he is just like it can't be good for Zara to hyper like she is right now.
Keep strong big hug, we can do this and kick diabetes in the f#$#*#+ nuts! Xx
 
Wow its been a long week!! Even longer than they usually seem!!

How are you and Zara doing?? Is she waking in normal range or are you still working on that??

Yeahh read up on MODY, i had never heard of it until Ryan was diagnosed. Baring in mind i was there when Craig was diagnosed it was never mentioned and i read everything he was given. I think it is really rare though. We still dont have Craigs results back but i know Ryan is type 1.

Had a bit of a nightmare last night...took Ryan to football and checked his blood sugar as soon as he came off the field. But my hands were so cold i must of dropped it. And didnt realise until i got home and i dont have a spare!! Panic set in a flew back down the field i couldnt find it! I was on facebook messaging all the mams etc. Luckily after a few more grey hairs i got a message saying someone had picked it up and they brought it back for me. I must get a spare!!

Those sound amazing i hope they are in the NHS and approved in children soon aswel. Ryans starting to wake up more often with his night time checks and he gets very upset with me and his diabetes. It makes me feel awful but they will know in time it was all for their own good.

I have had a few situations recently where Ryan will say things like 'i can have chocolate when im better' and he says it with such a innocent look on his face and it really breaks my heart having to keep explaining that he isnt going to 'get better'. He asks everyone if their pancreas is working to i can see he is thinking about it all the time. On a night when we check he sits going 'please dont be high, please dont be high' and if hes in normal range he gets soo excited its unreal! But if hes high he looks gutted. Then i feel even worse!

We have had a strange week blood sugar wise. 2 days he come out of school 12.0...this is really quite high for Ryan for after school. I have no idea why this is as he has 0.5 every day and he is now on packed lunch so i make sure i put the same amount of carbs in every day. The teacher said he had been outside too.

Yeahhh its very frustrating. I think we take a lot of the guilt being the ones giving the food and working out the dose. If we work it out wrong or things are changing so no longer working or going to plan.

Bug hugs back! Lets keep our fingers, toes, arms, legs and anything else we can think of, crossed for a cure!! Xxx
 
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