Honeymoon and illness

[Gemmablower]

I'm feeling at my wits end right now, the lantus seems to be working ok but I can't seem to get Zara down before bed the last few days she has been 18 even 20 at night.
The nurses are driving me crazy as they feel getting her down lower in the day will achieve a lower profile through the day but I personally feel getting her down at night would give her a better start in the morning therefore better through the day as there is no more room for exta insulin in the day as her correction is 20-1. They think possibly more lantus but again she already drops from these high teens to 8mmol. It's all a real mess, there is one nurse that is the one I prefer to deal with but can only get hold her twice a week. Feeling very deflated. How are you finding injecting before meals? Is it changing anything for you? Xxx

 

[nicolaryan09]

Ohhh nooo! Is it just after tea she creeps up is she ok during the day or does she just get higher after breakfast...then dinner...then before bed shes high? We usually find Ryan creeps up through the day if we are having a bad spell. A little higher after each meal then by night hes super high. If shes dropping by 8 during the night i agree maybe increasing her Lantus isnt the way forward. I do think the lower they start the day the better. Ryan woke at 7.7 this morning which is high for him and im expecting him to be higher than normal by tonight. Its hard to increase the novo when they are on such small doses. Is she ok in herself? Isnt poorly or eating anything different? (I know that if she had you woukd of changed it) but i was just wondering. It sounds silly but cheese dunkers knock Ryan sky high and i have no idea why. He loves them so i try to make them a treat. But there isnt any logical reason why the would knock him up its so bizzare. Unless its because cheese is fatty but there isnt much in those dunkers to be honest.

Does exercise help her a lot?? Maybe take her to softplay and let her run some of it off. I know its a short term fix but it make ease your anxiety even if just to get her down while you try other options. Ryans best days blood sugar wise are the nights he goes to football. Does she do dancing or anything or is she still a little bit young? Or any night time activity?

Yes im finding injecting before meals where possible is much better. He isnt bouncing so high inbetween meals. Sometimes even when he had, had his shot he would start with the thirst inbetween meals even if he was ok by the next meal and i knew he was running high before i even checked. But now he is much better and touch wood we havent had any major jumps yet. He had 1.5 units with tea last night because he had 70g of carbs and it didnt bring him lower than 9. He was 6 before he ate. Which doesnt make sense when 35g of carbs works perfect with 0.5. We are finding 35g is ok for 0.5...once you get to 50g he needs 1 full unit and 70 he needs 1.5. It doesnt add up Gemma and i have no idea why. It makes even attempting to carb count impossible.

The sun is out up here, not sure what its like where you are. But i am going to take my babies to the park and take a picnic and let Ryan run until his hearts content and fingers crossed he comes down for tonight.

I hope Zara comes down to. Do you check for ketones when she is running so high?? At clinic the nurse mentioned ketones can stop insulin working as well so sometimes you need double (usually if you are unwell) but i was just thinking maybe this could be a reason? I know no doubt you will of checked but i thought it worth mentioning just incase Xxx

 

[Gemmablower]

She's fine in herself bless her but does get hungry with all these highs and always check for keytones when she's up in the teens or consistently high then had only 0.2 thank goodness. Yes she creeps up after breakfast to about 13/14 then of course 2 hours after eating lunch as she started high b4 lunch she's rising above 14 to like 18 but does normally come back in range about 8/6 before dinner but a long time to be out of range for. Will give the 20:1 morning ratio a go and then Talk to nurse about bedtime before I decide to tear my hair out lol!
Yes she's quite active really and even if we haven't got much planned for the day I make sure we walk, even if it's down the road to the shops which is walking for 30 mins for a 2 year old this is good going I think, she takes her doll in the pushchair and she's happy. We have a trampoline in the garden so took your advice and she had been out on that a lot today and I think that help with a 6 before dinner but she's prob going to launch into oblivion now it's bedtime! Weather a bit rubbish here today, hope you enjoyed your pic nic and Ryan has a good day out and with the numbers.
Xx

 

[Gemmablower]

Ps do you have a bolus advisor? Xxx

 

[nicolaryan09]

Noo i dont?? I dont even know what you mean by that if im being honest haha

Thats really good for her age! Ryan wouldnt of walked for 30 mins when he was 2. He moans if we walk to and from school ha. Even though he loves running riot. Awwww dolls!! How cute! I have all that to come haha. Aww bless her pushing her dolly to the shops.

Ryans had a fab day. We went to the beach aswel and went in the amusements he was in his element. He was 11.1 before tea though so god knows what he would of been if we had stayed in.

We have just been invited to a family weekend away which is basically a group of families who have children with diabetes and they put fun activitys etc on. Apparently they do these all over the country. I cant wait to be honest. I think it will help all of us. Have you heard of anything where you are? Xxx

 

[nicolaryan09]

P.s.its organised by the NHS. Also..have you been asked to reg Zara for research purposes?

 

[Gemmablower]

Yes I have been asked??
The weekend away sounds really good I will have to look into that.
Where do you live then if you are by the sea?

Bolus advisor will help you to carb count it's a glucose monitor and then the ratios to carbs will make more sense. For example if Zara is on 20:1 and has 20/25g of food she has 1 unit but if she has over 28g she needs 1.5 and the advisor will offer this and take into consideration her correction factor and her previous blood reading. It's still tricky still even for me as untill Zaras on 1:25 for every meal then i see it becoming easier but it will possibly help to make things clearer for you when you are carb counting.
It prob would make a little more sense when you have been given a ratio for your meals. Where your night time ratio is like 1:50 this isn't really a ratio if you know what I mean and your best to stick to what you know.
Ask your nurse for one as they are useful though when carb counting.
Also tells you how much active insulin since your last bolus if you were about to bolus for something in between meals which is a bit much for me right now but the info is all there.
You can download the information into a graph format showing you the profile for each day which my nurse normally does when I see her.
I know she loves walking everywhere, when ever we go out she says are we walking? I want to walk there! She's funny.
I'm glad Ryan had a lovely day, hopefully it will help him get over the emotion he was feeling towards diabetes and realises he can still do his normal things, you seem to do a great a job of that.
Xxx

 

[nicolaryan09]

We live in Sunderland in the good old North East of England! Ha. I must be honest...i do love living a few minutes from the sea front. I dont think i could ever call anywhere home that wasnt on the coast. But we do get ****** weather because of it. Its colder on the coast and we get a lot of sea fret (if thats how you spell it) so do you not live near the sea?

Ahhh ok so it must be a general thing they do. I wasnt sure if it was just because Ryan, his dad and grandmother are diabetic.

Yes that weekend away is all expenses paid etc. It isnt for a fair few month yet. But what a brilliant idea. I hope there is one near to you to!

Ahhh...is it one of those clever meters where it records you readings etc?? I think Ryans dad was saying his mam has something clever like that. Craigs trying to get one. It sounds a bit complicated but i would give it a good go. I have all the time in the world if its going to help with his diabetes. I cant afford not to go back to work when my maternity leave is up...but i have decided not to go back to University. I try my best but its all to much. Hes more important than my degree.

Ryan is still up at the moment because we are having a bit of a nightmare with his blood sugar. I dont feel comfortable putting him to bed just yet. I was stumped as to why bt he popped to see his dad earlier and iv just been informed he give him a tunnocks teacake. Explains a lot.

Did you manage to get Zara low before bed? Xx

 

[Gemmablower]

What a nightmare! You ok? Is he high then?
Yes Zara is 18 again tonight. Just to high. 0.1 keytones so nothing to worry about there and her glucose will drop over night but I think i will see how the breakfast ratio pans out over the next few days and the dinner is next.
Yes it's great see if your nurse will get you one accucheck bolus advisor.
Can't believe the break is all expenses paid where is it to and where do you stay? That's very good.
Unfortunately I don't live by the sea, I live in the midlands so no sea I'm afraid.
What was your degree for? Have you out a claim in for DLA?
Must be hard having to go back in so many ways, are you able to work from home or cut working hours and get help with working and child tax credits? Just a thought might be worth looking into.
Xxx

 

[Stacey_c]

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 have to snack alisia nomatter what between mesls she jusy needs it cxc

 

[nicolaryan09]

What a nightmare! You ok? Is he high then?
Yes Zara is 18 again tonight. Just to high. 0.1 keytones so nothing to worry about there and her glucose will drop over night but I think i will see how the breakfast ratio pans out over the next few days and the dinner is next.
Yes it's great see if your nurse will get you one accucheck bolus advisor.
Can't believe the break is all expenses paid where is it to and where do you stay? That's very good.
Unfortunately I don't live by the sea, I live in the midlands so no sea I'm afraid.
What was your degree for? Have you out a claim in for DLA?
Must be hard having to go back in so many ways, are you able to work from home or cut working hours and get help with working and child tax credits? Just a thought might be worth looking into.
Xxx

Yeahh he was 16. Soo frustrating. He stayed at his dads a few nights ago and he rang me and said Ryan felt sick and was hanging over the sink. I felt instantly sick myself because i have this massive worry about him catching sickness bugs now hes diabetic. I didnt sleep all night and when i picked Ryan up the next morning he told me he had ate loads of sweeties and thats why he felt sick? Sugar free sweets but even still why didnt he tell me that on the phone instead of making me panic all night. Sugar free sweets are no good for him either. I wasnt happy.

Yeah im going to ask and see if i can get one. Did your nurse get you one??

My degree was in History. Then i was going to do a PGCE and teach because i love kids. Maybe one day i will go back to it.

Ermm its somewhere in Darlington the one we are going to. Not to far for us. I think they put transport on but i will just take the car. I cant remember what the place we are staying is called. I will have a look at the paperwork and get back to you.

I have been putting off applying for DLA the nurse told me i have to..i might go for it soon. Did you apply for it?

I dont have a good job. I did before i had Ryan but i left. I work in my local pub ha. Because i could work nights around Ryan because i didnt want to miss out on anything. So id have him all day and start work 6pm til 1am. I went back to college when he was 1 to get a better job and when i started Uni i dropped to part time. So i only do 23hrs a week. When we left his dad he kept the house so we had to move back in with my parents because i couldnt afford anywhere on my own. I was determined to get a better job but thats going to be put on hold now. Theres more important things in life.

I usually do a few things for charity every year (usually for little people with cancer) last year i did a skydive but not much else being pregnant. From now on i will raise money for JDRF. I feel like i need to be doing something towards helping find a cure. Ryan is on 2 research lists. I read so much about how things are coming along...surely there will be a cure in our little ones lift time? Do you think? I really hope so!

Do you ever feel like the constant thinking and worrying over food..carbs...insulin is making you go crazy? Sometimes when i eat i panic for a second and think 'i shouldnt be eating this!' Then remember im not diabetic. I think im slowly going mad!! Haha xxx

 

[nicolaryan09]

i have to snack alisia nomatter what between mesls she jusy needs it cxc

Is she on low doses of insulin? What kind of snacks do you give her? X

 

[Gemmablower]

Yes I know what you mean @nicolaryan09 into feel I might be going slightly mad sometimes! My diet is so good now I lost 2stone of the baby weight i had been trying to shift for ages most of it from when Zara was diagnosed dropped off but healthy eating and not eating whenever I feel like it has helped keep it off and I'm back to my pre pregnancy weight of 9stone.
Yes I applied for DLA and receive it now works out about 200 a month and every little helps in this situation. I think you can possibly get a higher rate of carer allowance after time but I'm not completely sure yet. I would apply Hun, it's there so take it to help with your boy.
I'm a beauty therapist and I'm lucky I work from home and work around Zara at the moment it's at night times and was when she was at nursery.
At least you can always go back to your degree I understand, you have your hands full right now.
Xxx

 

[nicolaryan09]

Yeah same here. I am on a diet anyway to be honest but i agree i was on the worry diet at first. The only problem i find is if i miss lunch when Ryan has it...and try to eat it later he will get upset because im eating and he cant. So now i dont even bother. Means sometimes im really hungry. Never mind.

We went to the pictures today for the first time since he was diagnosed. He got upset because everyone was eating sweets. Maybe it was a bit to early to go there.

That is quite a lot extra isnt it? I expected it to be lie £10 a week. Im not going to lie it would help because i spend so much more food shopping now. Do you only get it 3 month from diagnosis or is it back dated?

Hows Zaras numbers been today? Ryan dropped to 3.7 about 3pm hopefully hes ok tonight xx

 

[brottonmoores]

Hugs to all parents and their small ones that have diabetes
Jan

 

[Gemmablower]

Yes in spend a fortune on food now!
get the form call them up and they will send it out, will help you if you need me to, your nurse has to sign it and get her to check you have specified everything that is involved, they will have plenty of practise at these forms.
Yes I'm exactly the same I miss meals if I don't eat with Zara, so have to make sure I eat even though I feel like I'm not hungry, I know if I don't then I will be starving later, got to look after ourselves for a little ones.
I don't like eating in front of her unless I know it's something she can have so that helps with my type1 parent diet!

I had to give my partner a talking to the other day when he asked me to get him a bag of crips and proceeded tk eat them in Zara's view! Could of killed him for this! Of course she asked for one so I said he can give her 2 or 3 now your sat there eating her favourite crisps in front of her! Grrrrrr
Breakfast still high in fact even higher today 16 before lunch and then 11 before dinner. She had 1.5units instead of 1 this morn and she had 31g when she would normally have about 23. Nightmare she could of done with 2! Still see how it pans out.
She had peas for dinner with her roast and they always seem to help her on the lower side so let's hope the night is better with no extreme highs.

Bless h getting upset. Luckily I never have Zara sweets anyway so she's not used to the social situations where you relate things with sweets etc but I'm sure this will become harder when she sees her friends doing it.

We went to a new dance class the other week and in the middle of it they give the children a drink and a Jaffa cake which I told her she couldn't have and told one if the ladies she's diabetic then the other lady gave her a chocolate bar as it was her first lesson so had to tell her she had to save it for her bedtime snack which was a 7gcarb so thought that will be fine for her which she was happy with, then at the end they give them all a packet of harribo so managed to sneak them into my handbag for any lows and she forgot all about them but oh my gosh how many sweets!!!! Not going there again! Me or Zara can't deal with the feeling of isolation right now so will find somewhere else to dance.
She's had a lovely day today despite the highs so it's been nice out for Sunday dinner and playing outside on the climbing frame.
Was Ryan ok when he dropped could you tell before checking?
Zara's just got no awareness what so ever when she was last hypo in fact I have had more symptoms when she is 4mmol! Makes no sense.
Did Ryan calm down at the cinema and enjoy the film after a bit? It's so hard cuz as a society we have all these social attachments to food...sunny park-ice cream, cinema-sweets, parties-sweets it's a diabetic nightmare. I'm sure one day we will be in the position to accept that it's a one off and learn to either inject or correct later but I just can't do that right now with Zara running so high lately just want to get her down. Xxx

 

[Gemmablower]

Sorry I didnt answer you last posts questions.
Yes I'm hopeful for a cure but i do think lately there seems tk be movement in the development of certain monitors/pumps they have a bionic pancreas don't they that they are doing studies on and that inhaled insulin available in America which is very fast acting almost instant so I see progress but I do feel this progress should of been made a while ago with today's technology but at least it's happening.
That's amazing you did a sky dive! Yes i also question lately if there is something I could do to raise money for diabetes and feel there should be more awareness of it in general.
Yes my nurse got me the accu check expert.
And yes I dread the sick bug, we had one as soon as out of hospital and Zara was read low on monitor and my nurse was here so called an ambulance then cancelled it after her sugars came up with gel it was horrific for first day home after diagnosis but she was ok by dinner time and stopped being sick and was sent home fr hospital again! thank god.
Sick days now consist of sugary drinks, sweets, dry cereal and toast. Eating shreddies one by one and biscuits once she was out of low kept her steady.
I don't go anywhere near a sick bug now. My friends with there little ones all no how serious a sick bug is to Zara so always tell me if there little ones have been poorly. II sound like a paranoid freak but I don't care.
You on fb? X

 

[nicolaryan09]

Well Ryan didnt often get sweets from me (because i knew his dad give him far to many) so to even it out i would never give him much unless it was a special occasion or a 1 off. But he always has popcorn and either a few sweets or a little tub of ice cream at the cinema. He was looking around and all the children were eating i knew he was going to get upset. This morning he told me he hates being diabetic and 'its rubbish' and i could of cried.

We have just checked him there and he is 17.6 and i have no idea why! So hes getting upset again because hes hungry.

Yeahh i totally see where you are coming from. Its not fair. I dont eat infront of Ryan unless its something he can have either. His dad had a hypo in the car the other night so pulled out a mars bar and ate it. I said i cant believe you have just done that! If Ryan is with you then you need to treat your hypo the same way he would his. Not sit eating chocolate bars.

No he had no idea he was low today. It was just by chance i checked him because sometimes he hypos after sunday lunch then by tea hes up in the gods which is exactly what has happened today.

Haha that made me chuckle 'type 1 parent diet' its so true! Haha.

Wowwee that is a lot of sweets for any child!! Im not surprised you arnt going back! At school if its one if the childrens birthdays they bring in sweets and Ryan can never have them. They make a big fuss of him if this happens though and give him some fruit to bring home.

At Easter there was a day when all parents were invited in to decorate eggs. When we got there, there was a massive table full of biscuits and cakes and icing to decorate and eat. Wel the egg painting table was full and he couldnt do any of the other so we were sort of stood there..like idiots. There was juice but i didnt know if it was sugar free. So he had water. The teachers realised and took him for some fruit and he came back eating a banana. It was such a awful day though.

Awww im soo pleased she has had a lovely day. Its nice just to get out and do normal things. Eating out was a major thing when he was first diagnosed. Very scary.

I was just reading that children with type 1 should be 10 2hours after a meal. I cant even see how this is possible if im honest. He doesnt jump as high as he used to but he certainly isnt 10. And i cant give more insulin because hes in normal range 4hrs after his shot sometimes so how do you avoid that?

I see a lot of people suggesting a low carb high fat diet. Is that for people with type 2? Because i was told to reduce fat in Ryans diet. So he has flora light instead of butter etc.

Whats your view on sweeteners? Im trying to reduce Ryans intake of them if im honest. Get a bit scared some of the thigs i read. Xxx

 

[nicolaryan09]

The skydive was amazing!! One of the most amazing things i have ever done.

I have been looking at different fundraising ideas of JDRF website today. Theres a childrens muddy race which Ryan would of loved to do but they have to be 7.

Yeahh you would think so. I am hopefull that there is a cure in Ryans life time. I have a friend who has been type 1 since she was 2 and she cant remember not being diabetic. Shes my age now and she has 2 lovely babies and is totally fine. It does give you a bit hope. But she said she could never go on school trips away and stuff and it used to get her a bit down. I dont think i would let Ryan go away on any school trips to be honest.

Yeah i am on facebook. U? Xx

 

[Gemmablower]

Yes what's your name, Personal msg me if you prefer to out your name in private. There is a good type 1 parent page also I can try and tag you.
Yes at the moment zaras spiking high between meals but a lot to do with her doses not right yet I think. so for children they should not be anymore than 4mmol above the previous test pre meal, adults it's 2 mmol. So 6pre meal =10 mmol 2 hours later but obviously the higher they are starting then the higher they go it seems.
So anything over that 4mmol then that is what they call a spike they go up but still come back down into range so then you know the dose is right but the food is not and a certain food has to be looked at at what's caused it but your basal has to be right to identify the spike I'm pretty sure.
That's what i understand of it but others with more experience will know more.

Yes high fat low carb! I think a lot of type 2 take to this and type 1 adults it's more popular with but have spoken to moms on here that do it for there children and I understand why as it creates less margin for error and keeps a very tight controll. If you look up dr Bernstein he wrote a book called diabetes solutions which they seem to go by. I have the book here but don't intend on going low carb but the more info the better in my opinion.
I started to feel a bit lost for a while that this was what we would have to do but then my nurse and another parent on here assured me that with there children they have found that with current medication they have found they can still have good controll and they would think very long and hard about HFLC with Zara's age and that was enough for me.
You see people on here with good control and eating a normal healthy diet.

Yes Zara always drops after her roast dinner even when injecting after as she eats all her peas or sweetcorn first then beef and this slows things down in her belly and I'm pretty sure I have the carbs right it just always happens and always lowers her glucose like tonight bedtime she was 11 perfect!
Last night was less carbs than today lower pre dinner and ended up at 18. Crazy how that works but I notice it every time.
What was he b4 mmol? And how much and what did he eat and how long after was the hypo?
Sweeteners do you mean regarding diabetes or relating to with childrens behaviour? Either way -stay away from aspartame, tried that one with Zara and it's no good for her bloods. What's your view?
Have you been reading your book?
You finding it useful?
Yes I also have friends that are diabetic and it doesn't phase them and have had children or really really into fitness and sports it's very comforting to know.
It's so sad it must tear your heart apart when he says he hates it.
Do you let him have a bit of chocolate or anything? With a meal and add it in? Mayne if he understands there is a time and a place for it? That's what I have tondo with Zara, she's not into sweets but likes chocolate as i said before she has those little lint bunnies they are like 4g or a 10g freddo bar. I find chocolate ok as it's so slow acting with her and she has a treat day at the weekend where she can have a little.
Xxx