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Honeymoon and illness

Ryans dads night time shot is Lantus, but Ryans is levemir...i always thought it was different because of the age difference but it musnt be.. Ryan has 1.0 unit of levemir on a night and so far he wakes up 4's most of the time. We have had the odd morning hes been 3.9 or 3.8. Iv noticed straight away before testing him because its even harder than normal to get him out of bed n once hes up hes soo tired you would think he was drunk.

Ohhhh so do you manage to control those treats ok?? She doesnt sky rocket?? I really cant wait to go to this carb counting appointment. Im hoping everything becomes much easier. Do you manage to carb count ok, even though she is on such a low dose..?

Ahhh the pump...its swearing in our house..Ryans dad is 100% against them. I dont like the idea in a way...but in a way i do. Id like to control his diabetes the best possible way and i believe the pump is the best way to do this. His dad, however, point blank refuses...and it has to be a joint decision. So for now...and maybe forever...the pump isnt for us either...

Awww Ryan loves banana and custard but he hasnt had it in what feels like forever now. Im looking forward to the day he can have small treats again and i dont watch him drink the sea dry after.

So we had another go at pasta today and managed to guess right. Ryans insulin requirement has dropped still and he is only going between 0.5 units and 1.0 units.

We also give Ryans insulin after he eats. But sometimes he takes soo long to eat his food it worrys me he will already be high before his injection. If i cud guarntee he was going to eat everything on his plate i could give it before but its soo unpredictable...

We are going to a family fun day tomorrow and in with the price of the ticket the kids get pizza and chips..im thinking about it and dreading it already. He hasnt had pizza since he was diagnosed..but i know what it does to his dads blood sugar so im worryin in advance. And i dont want to take his food with me so he feels different from the other children. Maybe if he runs around a lot it will help?..
 
talking about ryan my little girl is newly diagnosed and i find from waking till lunch she can drop quite rapidly so instead of 1-25 ive changed her to 1-35 and still have to snack her eg , a small glass of milk i presumed on waking ur body uses more energy . for bed she has 20g in weight of porridge with soya milk this is around 10g carbs , this gives her fab waking bloods xx
 
Yeahh Ryan can drop very quickly even with 0.5 units. But you cant go smaller so..there isnt much else i can do. Hes very sensitive to exercise so if we walk to school rather than take the car i have to let the school know to keep a extra close eye on him.

Supper is where we struggle most. He can be 5.6 before supper and even 1 wheetabix with a drop of milk can knock him as high as 17-18. I test him when hes asleep a few hours after supper to see what it knocks him up to. He always wakes up in normal range though so we cant give him a tiny bit of insulin because he will probs drop durin the night. They are not sure if hes coming down so well due to the levemir or because hes still producing quite a bit of insulin himself now and then when his body realises he is high. His diabetes was caught very early.
 

Chocolate with her meal seems to be ok actually no massive spikes but she doesn't have anymore than 10g carb and you can prettymuch guarantee she will eat it! Lol ! so I inject after dinner and before her choc treat. If she was to have 5g carbs of chocolate as a snack rather than 5g of fruit then yes she ends up higher than she would of done unless she's having a energetic afternoon.
Family fun day sounds lovely. I would just think to yourself how often does this happen?!? And with the running around after you might find it's not as bad as you thought. Can always be corrected if he goes high as it's a one off.
I had a similar situation me and my friend had a trip into stratford and her son had ice cream which I had been dreading Zara asking me for but I let her and you should of seen her face I don't think she could believe it!
We shared it and it's moments like that that make me realise, sometimes it's about quality of life, little give and take. It's not all the time and she understands that.
It's got to be helpful having a dad who knows about diabetes for you and Ryan. We had no clue as Chris my partner was adopted we had no history there. Lucky we also caught it early enough.

Zara's ratios are changing quite a lot. Always managed to carb count ok and gave me the understanding and helped me figure things out quickly. she could only have 0.5 unit at lunch and dinner and how much carbs she should have. (Some honeymoon and come off nuvo rapid for a period of time) we weren't that lucky.
She's now 20:1 breakfast 35:1 lunch and 35 possibly 30:1 dinner.
Yes I found for a long time untill Zara got a cold that 1unit with just 30g carb could drop her 9/11 mmol so stuck with 0.5 for lunch but it's definitely all on the the rise now. She's had so many colds that it just keeps killing off honeymoon :-(
 

Yeah..with Ryans dad being diabetic we already knew most things about diabetes although Ryans diabetes is managed differently. We did always worry Ryan would develop it but we hoped he wouldnt be this young. Ryans grandmother was diagnosed at 18 and Ryans dad was 24 (i was 20 weeks pregnant with Ryan at the time and the same week we found out we were having a little boy, we found out Ryans dad was diabetic) it was the best and worst week ever! He was very unwell!! If i hadnt taken him to a+e i dread to think what would of happened. It was a very scary time he had DKA. All his blood salts were messed up to. Its put the fear of god into me about ketones. But i read every book going once he got home. And once Ryan was born i did everythin i could to reduce his chances of developing it. I breast fed and he didnt start solids until 6 month etc. But hes developed it at 5yrs old. We noticed he was drinkin and weein so we just tested his blood sugar and he was 26. We took him straight to a+e. Hes took it like a trooper though (i think all kids do, they put us to shame and take everything in their stride) and because he has always seen his dad finger prick and have his insulin it was a lot easier for Ryan i think. He does his own finger prickin and his own injection (we always clear the needle and set the dose, and watch him doing it...because he is still only 5) but the fact he can do it is fantastic i think. Sometimes i take medication which has to be injected in my tummy and i cant do it myself..Ryans dad has to do it for me. So hes braver than me already ha. Hes such a Daddys boy though, so he seems comforted that hes just like his dad in some ways. I no longer eat chocolate and even though im not diabetic we say we are all on a 'team' ha.

Awww i bet she was over the moon she could have ice cream. At school in Ryans 'hypo box' he has lucozade, dexy tablets and plain biscuits and after school before they broke up he dipped to 2.9. He had his dextro tablets and the plain biscuit and the excitement and enjoyment on his face from a plain biscuit was unreal. He ate it soo slow to savour it.

So did she sky rocket off the ice cream or did you give her enough insulin to cover it? If you eat out and dont have food labels...do you just guess?

So when shes no longer poorly is she still requirin the same amount of insulin? Ryans cough and cold defo messed with his blood sugar. Which was strange because about 3weeks after he was diagnosed he had a ear infection and it didnt effect his blood sugars at all..

Is Zara at school or nursery yet? By your pic she looks a bit younger than Ryan bless her. X
 
weetabix sends Zara high aswell if she has it in the morning she goes high but porridge and shreddies suit her But yes my consultant also recommended a high bedtime reading as at the time she was waking at 4/5 even after being 16 at night and only 0.5. I now have some room to get her lower at night time as if she is 16 now she would wake up 7/8 so i aim for 11 but saying that I think her basal is possibly changing aswell!!! Just all gone up in the air at the moment. Yes she went to 14 mmom hour and a half after ice cream and was 4mmol before and then still went high after dnner at bedtime as I think the fat really slows the absorption causing even more of a rise later on but also as I say her basal is seeming to need adjusting aswell. Xx
 
Was ment to say that's amazing his already doing his own injections! What a star x yes Zara was at nusery she started last September, she's 2 and 3 this year. It's a real shame as she was so settled at nusery and the. She got unwell and last few times in the run up to diagnosis she was just crying the whole time there. The staff said she's just not herself get her checked again my a doc. I did but said just a virus. So when she was urinating and drinking to excess I spoke to my sister in law and she said to by a monitor and check her sugars so I did and it just read high!! Her keytones were 4.0 and she was still standing!! Luckily no coma, she was placed on a drip over night and began insulin we were out after 3 nights but it was all so traumatic for her and us all that when we went back into nusery a month later she just couldn't cope with it and I felt she had been through enough to be trying to settle her back in. We have spent 2 days last week settling her in with me there but her confidence had been greatly knocked and I feel it's going to take a few more settling in sessions till I feel she's not so overwhelmed. I wouldn't bother putting her through it but she starts full time September next year and at some point I'm going to have to do it.
Xxx
 
Awww bless her i can imagine its a lot to take in for her, especially at such a young age. And its all totally new to her and you. I dont think Ryan would have taken it so well if he wasnt familiar with it already. A few times when he was 2 and 3 we have checked his blood sugar when he seemed to be drinking a lot but he was always ok. So he had his finger pricked a few times so it wasnt something that was a issue for him really.

Ahhh yeah...its hard to get around really isnt it. Because if she has to go in sept you are going to have to do it eventually. Do you feel happy the staff know what they are to do etc? We had a meeting with Ryans diabetic nurse and teachers so i was there when they were trained. And i went down for the first week to watch them do his injection so i was happy to leave him. They ring me if they ever have a question though they are fab. But once he moves up to year 1 im going to have to put my trust in other teachers who i dont know. I found that really hard...trusting someone else to set his dose and inject him...

Ohhh so she was quite unwell then bless her. Seems like she pulled round quite quick though. The drip isnt nice for anyone never mind a 2yr old im not surprised shes been overwhelmed. Ryan had 0.2 ketones when he was admitted and he was in 5 days. But they didnt start insulin until the second day. He thought the hospital was great because he was well in himself. Always down the play room. He asks to go back!! I try to explain hes lucky he was so well and he doesnt want to go back because he wouldnt be able to play he would be poorly. He doesnt really understand...

So today Ryan had 2 wheetabix for breakfast with 0.5 units and 3 and a half hours later before dinner he was 3.2. No idea what is going on. Do you feel like you are getting back on track with Zaras bloods?

Ryan had a fab time at the fun day by the way. And so far so good with the pizza...i was nervous with him running riot and the hypo before dinner though so i checked him every hour (i hate doing that because i dont want to make his little fingers sore) but needs must..xxx
 
I'm so glad you had a lovely time and it went we for you both.
So 3 and a half hours later he had a hypo could be his basal
Possibly?? Specially if he goes to bed 17 and hypos at night was it?
Speak to nurse cuz I can't be sure.
Did he have a snack in that time in the morning?

Yes i just hope she's ok going, it's just heartbreaking enough settling in again when she was so happy there before let alone throwing this into the mix!
The nurse had been in with me and I have been Working alongside her key worker but they aren't going to do her lunches till next year I decided just snacks.
How often does Ryan test at school?

Zara's all over the place she went to bed the other night at 13 and woke at 9 and from then on waking at 11 mmol in the morning and all the ratios are creeping up for more insulin it's not coming down now by the looks of things.
Adjusted morning and night ratio that's working but I'm having to do some checks on the lantus and might need to increase it but need to get her down really now before bed so I can see if she still wakes high and it's the lantus or if it's just she can go to bed between 8-10 mmol now.
It's really going crazy again here, so I know how u feel She has been ok in herself though today bless her, just want to get it stable again but I'm playing catch up as have to adjust very slowly, things like this always happen when it's the weekend and I need to make some decisions and all out nurses are off so have to call hospital and they are useless if I'm perfectly honest! Xxx
 


He doesnt always go to bed at 17 but sometimes wheetabix knocks him up that high. We have had the odd mornin hes woke up 3.9 or 3.8 before breakfast. This morning he had ready brek and 0.5 and he was 3.9 at school by 11am. I dont think i will give him have that anymore for breaky when hes going to school because it just doesnt keep him going. He had some before bed last night and woke up 4.3 this morning so we may keep it as a supper or weekend breakfast.

Ryan only checks his blood sugar before dinner aslong as he feels ok. If he feels tired (this is the only way he says he feels when hes low) they will check him. Or..if they notice hes gone a bit pale and quiet they check him. Today the teacher noticed he didnt seem right so checked him and she was correct, he was low. 9 times out of 10 they notice hes low...he doesnt say. The odd time they have checked him and hes been in the 4's but i would rather them check if they are unsure and if hes not low...atleast they know. Rather then them not checking at all.

Wow...she went to bed on 13 and woke up on 9? So is that her lantus that will need adjusting? Especially if she is waking on 11. Ohhhh...iv just re read ur message i see what ur saying. I suppose the lower she can go to bed and stay there the better. If shes 9 before bed for example and wakes 9 or a tiny bit lower thats brilliant. Because then u dont have to knock her up before bed incase she dips. Then her Lantus could be left as it is. Do you not have the number for her doctor? Our doc is on call 24/7 and incase she isnt we have the number for the other doctors. I rang her quite late one night i felt awful but she said it was fine. Our nurses dont work the weekend either. It is defo typical stuff like that happens when they are off.

Im worried about the fact we have to knock Ryan so high on a night time. Last night he ws 4.4 before supper. He had ready brek (the sachet ones so i know what hes having) and its 17g if carbs plus his milk and he had that with no insulin and woke up 4.3. Im going to see if we can reduce his levemir to 0.5 and see if he wakes up any higher. If he doesnt then i know he is still producing insulin and bringing himself down over night. If he wakes up higher then hopefully i can put him to bed lower without knocking him up. It just isnt good for him runnin that high even when hes asleep and its bothering me. I will ask on wed at the carb counting app.

Aww im pleased she has been feeling better rather than rubbish. I suspect if shes feeling well it will help her settle into nursery a bit easier. If she isnt feeling well then it will no doubt be a bit harder. Ryan doesnt like being away from us when hes not feeling great. I dont think any children do, do they.

Has Zara had her HbA1c rechecked since she was diagnosed? Xxx
 
No she's not had it checked yet as so recent after diagnosis an a nurse asked me to but as it was 2 months after I told her I don't want it so soon as there would of been no gain as I knew she was high anyway she hadn't settled down by then, I was having one of those don't come near my daughter proding and pricking her days! Lol was all to much for her then and me! Got one in the next few weeks but the rate of change now I can't imagine it being very good now.

Yes I'm really struggling on making a decision actually. It bothers me to that they allow children to run so high at night.
What does your husband go to sleep on?
Spoke with my nurse she told me to increase the lantus but I'm not convinced I inderstand why but like you say I hate having to knock her up before bed but she does like a milk and biscuit before bed! It's like the one joy of her day so kind of don't want to take it away.

Yes she won't settle at nursery when feeling ratty so it's a difficult one! We went in today and for the first time since she was really settled it was really nice so hoping to leave her Thursday for a couple hours.

Did Ryan have a mid morn snack mid morning aswell? Def talk to nurse have you read the book on diabetes in young child and adolescent? It's really usefull. X
 
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Ohhh Ryans dad isnt my hubby haha. Its a very complicated situation. We arnt together anymore.

Craig has some bad habbits...he doesnt attend clinic anymore...he refuses to go to bed in normal range because he always has hypos during the night. Some are really bad. So he always eats before bed. I have told him he needs to start going to clinic again and maybe try dropping his Lantus..hopefully i can get him to start going soon.

Ryan is having his HbA1c done in a weeks time. His thyroid is also being rechecked. His dad also has to have blood taken because they are checking his antibodies. Ryans antibodies were all negative on diagnosis so depending on Craigs results will depend if they check Ryan for MODY. Im pretty sure they are type 1 but im pleased they are checking. Ryan didnt really have that bad of a HbA1c when he was diagnosed. It was higher than someone that isnt diabetic...but not as high as someone who is just diagnosed usually is. I hope its improved but im not sure if it will of..

Awww im really glad she seems to be happier in nursery thats fabulous news. Fingers crossed it continues.

I havent read that book no, but i may invest if its a good read. Does it go into long term complications? Because i try not to read that kind of stuff. But if it doesnt i will give it a read. I read a lot when Craig was diagnosed but its different in children isnt it.

He didnt have a snack like he usually would (always fruit) because the school had none. They only had raisins which he isnt allowed. This morning he had 2 wheetabix and was 6.0 by dinner which is fab. He was 6 after school and 5.6 after football (thats with the haribos so its a good job he had them) so it hasnt been a bad day for him. Well...that is until now when im going to have to knock him up for bed.

Im definitely going to speak to the nurse about lowering his Levemir. See what happens. Then if he wakes higher he can go to bed lower. I think they are pretty convinced hes still bringing himself down over night. But i would like to explore that by dropping his lantus to 0.5.

Soo its coming up to the nice weather and Ryan really wants to go away somewhere like we did last year (just in this country) but im feeling really scared about it and im not sure why. Is this something you have thought about or not? We went to the lakes last year..and i worry that i wont know where the nearest hospital is if anything goes wrong etc..maybe i am over thinking things? Xx
 
I totally here you about the holiday I feel the same, holiday is ment to make you feel like something to look forward to but instead it fills me with anxiety, I suffer a lot now with anxiety over things to do with Zara it's horrible but sometimes the only way to get over it for me is to make myself do something when YOU feel it's right and once it's achieved it builds confidence kn the situation.
We have a family place in Bristol and we went a few weeks ago just for the weekend as a change of scenery for us all and gave me chance to practise! Her sugars were really good back then so I felt confident and we had a lovely weekend and Zara was so happy there she just loved it.
I understand your feelings completely as I do not want to go abroad this year but might go to the family static caravan in Cornwall as might as well it's free and I know what to expect there.
I think you should do something it will do you both good and build your confidence. You don't have to go toneat and you can find out everything like hospitals etc before hand just take spares of everything!
I'm glad Ryan's had a good day, Zara's coming down now slowly but surely. I took the decision to increase the lantus as Zara was actually higher than her bed time reading at 3am she was 16! For last two nights and then woke at 8.5 so it's just to high to start the day and far to high for 3am!!
Hopeful it's works out fingers crossed for another few night checks!
Yes it's def worth a read it possibly had a couple of pages or a section on complications but it's not one of those that rams it down your throat type of books, it's quite medical in my opinion, so talks about different insulin and how they work, dealing with high keytones and adjusting doses for that, so much info in there you have to read it, I will send you a link. Xxx
 
Fabulous, thank you. I have just orderd it. I will give it a good read and skip past any scary parts.

How many checks do you do a night? Does she sleep through them ok?

Ryan had a banana after football and after his bath etc he was 4.3. He had some cereal and went to bed. At his 2hour after supper and bed check, he was 15.7 i agree its just far to high. Do u always do a 3am check? What is she usually by that hour if her bloods are doing well?

One night i decided cereal was to much for Ryan before bed so he had crackers instead...what a nightmare night. I didnt sleep at all for checking him. It barely touched his bm. He was 5 and 6 at 11pm. In the end i had to wake him up for him to eat and he cried and cried then he got up at 5am for the toilet and asked me to check him and he was down in the 4's. So we were up for another snack and by breakfast time at 7.30am he was back down to 5.7. So i know if i hadnt given them snacks he would of went to low. So i have no choice but to give him something decent for supper. Its very frustrating...

I hope increasing Zaras Lantus does the trick. Its such a worrying time during the night i think. I have had a few scary moments when Ryans been having a nap and when iv went to wake him hes been soaking with sweat and my heart does 90 to the dozen until iv checked his bm. He has always sweated a lot..but now i automatically worry its blood sugar related.

Ryan has a little sister who is 4month old so its really hard for me to set an alarm to do his checks early hours of the morning. Because my alarm will wake his sister. Who luckily sleeps through so she doesnt have me up for feeds. So i tend to just stay awake and do a 1am-ish check then 6am when she gets up. If i needed to check every 2 hours i would probs sleep in his room.

Sometimes the finger prick wakes Ryan though then he throws a full on tantrum and gets very upset with his diabetes. I did see something advertised that pricks their finger with no pain? But it is pretty expensive. I may ask the nurse and look into it though if it stops him getting disturbed xxx
 
Yes I think I saw something that allows you to prick the arm and thought that sounded interesting as was ment to be pain free.
I have got a libre arm sensor and I might look at that but Zara hates getting it off! Cuz it's so sticky and had to do it with oil and water but it's good for checking what her levels are doing at night as it shows you in a graph form and you only have to scan her arm no pricking so she's oblivious. At 9pm I check every night but while her lantus has been changed since and the run up to it I have been doing random checks at either 3-4am. She was lower at 3am last night and was 12 when she went to bed on 16!! Which was to high but at least she is lowering through the night now rather than rising. I expected her to be lower this morn but it is the first morning and can take 3 days to kick in so she woke at 10 :-( expected a lower than that but she was high going to bed and woke up earlyier than normal and think that gives her a little rise.
So when her bloods were good and was checking in the night with the libre it was a slightly different profile as her injection used to be at night and that really made her drop fast between 12pm and 4am and then she remained steady at 4am around 6mmol.
Now she has it in the morning it seems to totally change the profile of the night which is why we moved it originally.
It's sort of reversed it and she remains level between 12pm and 3am and then drops a little but still not exactly sure what's what yet got to keep checking for prob another week.
I think you will find the book useful glad you got it.
That's hard with a little baby, I can't imagine how hard it must be. What an amazing mother you must be x
That's great you got the football routine sorted. I'm so happy for you, does he rise at all straight after excercise and then drop or just drop?
X
 
Gemmablower said:
Your picture is so cute
Click to expand...

Awww thank you he is a massive cutie pie you cant really see his face properly for his little trophy (he was soo excited about that)

Good news..i got a email to say the book had been despatched! I cant wait to get my hands on it now..

Ohhh she has her Lantus on a morning now?? I didnt realise...i dont know how i havent read that if u mentioned it?? Maybe lack of sleep is taking its toll on my memory haha

They mentioned Ryan having his Levemir on a morning if he continues to come down drastically on a night because it doesnt work for a full 24hrs so it will stop working early hours and stop him coming down further, rather then over tea time. If she is high on a morning would it not be better for her to have it on a night again? I know you said you have put her lantus up to try and help but why was it changed to the morning? Apologies if u have already mentioned this i dont know how iv missed that

I havent heard of that sensor? It sounds handy though. The finger pricker which doesnt hurt is genteel or something i think. It isnt cheap though

Ryans dad usually goes up a tiny bit after exercise then once he is resting..comes down very quick. But Ryan tends to come off the pitch pretty low. Usually 4's and 5's. Then he continues to drop for the next few hours so he has a snack straight after football and then a decent supper.

Awww thats a really nice thing to say, right back at ya ha. Ryans sister was only 6 weeks old when he was diagnosed it was a very hectic worrying time. Trying to remember to pack everything i need for them both now even just for a day trip out is unreal.

Hows Zaras day been?? Ryans has been good. Hes stayed in normal range all day but he wont be nw hes had supper. He went to bed a bit later than normal 2nite so he hasnt had a check yet.

We decided to keep Ryans Levemir at 1 unit. His nurse said dropping it would mean he has to have Novo with supper which is something i dont feel comfortable doing at the minute. Until his doses go up. 0.5 is as low as we can go and he has that with breakfast and comes right down 4hrs later...sometimes less. So we cant do that xx
 
I see gosh his on very little still isn't he, that's great his on so little.
yes we moved her lantus quite a while ago for the similar reason. when she was on just 0.5 units and still going to bed high teens and still waking at 4mmol and I didn't like this huge fluctuation but they wanted to keep her basal insulin even though she could of possibly been producing enough of her own I think that they prefer to have a little basal and reduce nova rapid or in ryans case come off it.

Can't believe your little girl was 6weeks old when Ryan was diagnosed. Hardly surprising of you are wiped out, I feel wiped out as it is!

It was pretty soon after diagnosis that we changed the timing so I don't think i told you that.
I prefer it in the morning for Zara at the moment, I don't know about levemer apart from I think it's like 20/22hours lasting but lantus is ment to have a flat 24hr profile but it obviously doesn't and has a peak a few hours after and I don't feel comfortable with the peak being at night yet! See what happens over the next few days.
Zara is feeling so much better and is slowly coming down still high in morn waking at 10mmol then 8 and 5
but 14 before bed and could tell she felt rubbish after her dinner as she was in the rise again after having just half unit but had I have given her an extra half unit she would of been 6 before bed and would have had to eat prob another 20g of food before bed lol so went with 0.5 unit as she was 5mmol.
Hopefully we begin to see a normal breakfast reading again tomorrow. Xx
 
So Zara settled in great today at nursery in so pleased she had a happy few hours there x
Her numbers are dropping pretty quickly today she has been 7/8/5 so she is really dropping and also she dropped off 25g of food and 0.5 unit at lunch it's making thing if she gets any lower pre lunch she might be about to drop her lunchtime insulin which makes me ask you the question ... Ryan just has 2 doses of nova morning and lunch is that right? No dinner rapid acting? At what point did the nurse decide this I presume it was after hypos at night? Will be keeping in contact with my nurse of course but just curious? X
 
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